Graves Disease – My Story of Hyperthyroidism
In January of 2002, I was diagnosed with Graves disease, a form of hyperthyroidism. Graves is the most common form of hyperthyroidism. The disease happens when your immune system mistakenly attacks your thyroid gland causing it to overproduce the hormone thyroxine.
Some of the symptoms that occur when you have Graves disease are:
- Anxiety
- Irritability
- Difficulty sleeping
- Fatigue
- A rapid or irregular heartbeat
- A fine tremor of your hands or fingers
- An increase in perspiration
- Sensitivity to heat
- Weight loss, despite normal food intake
- Brittle hair
- Enlargement of your thyroid gland (goiter)
- Light menstrual periods
- Frequent bowel movements
When I was diagnosed, I had no idea anything was wrong with me. In hindsight, I did notice that I was not gaining weight in spite of my one dozen cookie consumption daily. I just thought I had one hell of a sweet tooth and since I was running and coaching field hockey at the time, I really didn’t think twice about it. I figured the running and coaching was burning off everything I was eating. Apparently, I needed a lesson in calorie consumption vs. weight gain.
In December of 2001, I had woken up with extreme back pain – in fact, I almost couldn’t get out of bed–in fact, I rolled out of bed onto the floor. In December 2001, I was 22 years old, so there was really no reason for me to be in that much pain. I was petrified as I had never been paralyzed like that. So I called my doctor’s office to see if I could get in to see the doctor.
My internist didn’t have any appointments, so I ended up going to see one of her colleagues who couldn’t find anything the matter with me. I really think this back pain problem was the beginning signs of the Graves disease. They took my blood that day and noticed that I had a large amount of sugar in my urine. This was easy to explain because I was eating 1 dozen cookies a day. So my doctor told me that I would have to come back to have a blood test done for diabetes. I loved my cookies too much and didn’t want to be a diabetic, so I avoided the test for a number of weeks. When I finally went to take it, they found that I wasn’t diabetic. At the time, I wasn’t tested for thyroid issues at all.
In early January of 2002, I went for a routine physical examination at Planned Parenthood to get birth control. Upon examination of my lymph nodes and neck, the nurse practitioner at Planned Parenthood said, “Oh my God! What is the matter with you?” as she touched my thyroid (which I didn’t know was my thyroid at the time). And I replied, “Well, lots of things are wrong with me! Why do you ask?” She said, “Your thyroid is the size of a baseball.” Much to my puzzlement, I responded, “Okay. Is that a bad thing?” She replied, “Yes! That’s a bad thing! You need to go see your doctor ASAP!”
So I went to my doctor afterwards. Ironically, I was leaving January 31 for Europe for 3 months.
Sure enough, I visited my doctor, my blood was taken and I was told that I needed to see an endocrinologist (a doctor that specializes in the endocrine system and deals primarily with patients who have thyroid disorders, like Graves disease, and diabetes).
I first saw Dr. Mitchell S. Hamburg at St. Luke’s Hospital in Kansas City, MO. Since it is difficult to find endocrinologists, I thought I would include his address herein:
Saint Luke’s Internal Medicine
4321 Washington St Ste 3000
Kansas City, MO
Dr. Hamburg diagnosed my condition as Graves disease. He mentioned there were options, like anti-thyroid drugs for two years and then we would proceed with RAI (Radioactive Iodine). As the years went by, I decided I would change doctors because Hamburg’s bedside manner was not where I needed it to be. Sure I was just another patient, but I was terrified to have RAI. In hindsight, though, I believe Dr. Hamburg was one of the better endocrinologists I saw in my Graves disease journey.
In about 2004, I started to see, Dr.Jeffrey D. Kallsen at St. Luke’s Hospital in Overland Park, KS.
12330 Metcalf Ave
Saint Luke’s South Primary Care Suite 400
Overland Park, KS 66213
He experimented more with different doses of Methimazole to fight the Graves disease, and finally said he thought I should do Radioactive Iodine to rid myself of the Graves disease.
However, I had a gut feeling not to do RAI (Radioactive Iodine) and have always felt I would achieve remission from Graves disease, s decided to change my doctor to someone else.
My thyroid started out as the size of a baseball and reduced to normal size in 6 years. I think if I had done RAI from the get-go I would not have had the opportunity to see the reduction in size. I am on a Graves Disease Yahoo! Group list serve and I learned the following from a person that has had RAI. It just scares the heck out of me. I had asked her if she had to stay away from her family for a period of time and this was her response:
“For days depending on how much the RAI dosage is given to you. The nurse will tell you how long you are to stay away from people & pets. I work for the post office as a letter carrier and I pretty much let everyone know about RAI and to stay away from me. You need to use paper plates and cups so that you can throw them away in separate garage can. After 2 days of brushing your teeth-throw the toothbrush away. Wash the bedsheets & towels after using right away. Sleep alone. You can have pets but can’t hold or hug them at all. I had to stay away from my hubby & everyone for 7 days due high dosage of radiation, but I talked to people on my route (keeping myself far from the person). Had to use the upstairs bath alone (clean the toliet seat with bleach everytime I use). No fun at all but time goes by fast.”
OH MY LORD!! That is insane in my opinion. It scares the heck out of me that I cannot be around anyone for 2-7 days, but I can be around myself?! I also don’t get undertstand how you are supposed to believe that the RAI will not affect any other organs in your body? I mean the thyroid IS connected to other organs and you are swallowing the RAI, so why wouldn’t it go to other areas of the body?
Elaine Moore, the author of Graves Disease Book
“I’ve known people who have been on methimazole for more than 10 years although most people who are avoiding environmental triggers will receive remission within 8 years on meds. Studies show that long-term low dose ATD use is associated with the highest rate of permanent remission.”
Which I find highly encouraging.
I also have been looking into Iodine therapy, and have included my communication about Iodrol below:
— I wrote:
Hi Elaine,
What do you think of Iodrol?
—–Original Message—–
Sent: Wed, 12 Mar 2008 4:18 am
Subject: Re: what do you think of iodrol?
Hi,
I wouldn’t use it for Graves disease. People with GD
are particularly sensitive to iodine. In general,
excess dietary iodine triggers autoimmune thyroid
disease, and most of us get about 10 times more iodine
than we need. The idea with methimazole and other ATDs
is that they block iodine absorption in the gut. This
reduces the amount of thyroid hormone the gland can
produce. You defeat the purpose here if you add more
iodine. Best, Elaine
—–Original Message—–
From: Guy Abraham
To: Jennifer Dean
Sent: Wed, 12 Mar 2008 6:22 pm
Subject: RE: what do you think of Iodoral?
Dear Jenny: Thank you for sharing with me and Dr. Abraham Elaine Moore’s opinion about Iodoral.
The following is Dr. Abraham’s response to her e-mail to you.
1. “People with Graves disease are particularly sensitive to iodine.”
Response: Iodine was used in the treatment in Graves disease from the discovery of iodine up until WWII. Please look at our website Optimox.com at publication #4 Abraham, G.E.,The Wolff-Chaikoff Effect: Crying Wolf?The Original Internist, 12(3):112-118,2005 and publication #5 Abraham, G.E., The safe and effective implementation of orthoiodosupplementation in medical practice. The Original Internist, 11:17-36,2004 up to 90% success rate was reported on the use of iodine with graves disease.
2. “Excess dietary iodine triggers autoimmune thyroid disease.”
Response: Iodine is the treatment for autoimmune thyroid disease. Again read publication #5 on our website.
3. “Most of us get about 10 times more iodine than we need.”
Response: Based on the very low RDA the last survey revealed 15% of American women are deficient in iodine.
4. “The idea with methimazole and other ATDs is that they block iodine absorption in the gut.”
Response: ATDs do not block absorption of iodine in the intestinal track but block the uptake of peripheral iodide by the cells.
5. “This reduces the amount of thyroid hormone the gland can produce. You defeat the purpose here if you add more iodine.”
Response: Iodine in the proper amounts normalizes thyroid hormone whereas ATDs suppress abnormally the thyroid hormone. Iodine is an essential element that the body is used to. ATDs are man made drugs that are toxic.
I know this is all a lot to take in, but there are other options out there. Someone told me yesterday, “Just take it out!” It pissed me off. My thyroid shouldn’t be taken out…it isn’t doing anything wrong, if anything my immune system should be taken out (and I am sure that sounds insane – as insane as taking out my thyroid does)…it’s doing something wrong by attacking my thyroid. I think of my thyroid as an innocent little guy…why don’t we look for ways to help our immune system rather than our thyroid? Really, is our thyroid doing wrong? It is just responding to the immune system that is attacking it.
When I spoke with a lady at RAI she told me, “Do not do RAI. It will put so many toxins in your body and destroy things you will never be able to repair.” And well, I haven’t had children yet, so that scares the heck out of me to mess with those other organs like that without really anticipating the consequences.
I think all of us are different and all Graves disease is a little different (some people have goiters and some do not) and I think that you will have to find your path…what works for me might work for you or some of it might work and you might need something more or something less, does that make sense?
I have been doing NAET treatments since August and haven’t noticed anything, but have faithfully gone almost every week since August. However, last week I was treated for auto immune system and oh my did I feel that one. And since Graves disease is an autoimmune disease I ended up only clearing 80% which wasn’t terribly exciting, but not surprising either. I have also tried acupuncture and herbs, but I am not sure if I was mentally prepared to devote time and energy to it, so I feel like I did it half-ass. I am trying acupuncture again and we will see how it goes, I will keep you all informed. All in all, I have never felt bad with Graves disease only when I go hypo because I am being overdosed on my medication.
In March 2008, I went to see Raj Bhattacharya, M.D. at the University of Kansas Medical Center. He was the fourth endocrinologist that I have seen. I first went to Mitchell Hamburg, M.D. at St. Luke’s Hospital in Kansas City. Then I visited Jeffrey Kalsen at St. Luke’s and finally settled with Richard Hellman of Hellman and Associates at North Kansas City Hospital. Richard Hellman had the best bedside manner of all of them, but is extremely busy and only took Blue Cross Blue Shield, so I had to see another endo to save money with my current insurance, Coventry.
When I went to Raj Bhattacharya, I brought paperwork about alternative treatments. I had asked the phone staff for an alternative thinking doctor–one that wouldn’t immediately suggest RAI. They told me Raj Bhattacharya was my best choice since he was the youngest.
Well, well, well, were they wrong!! I have never met a more closed minded doctor in my life. He was the first endocrinologist I have seen that asked me to de-robe and put on a gown. I later found out that my doc at Mayo would do that too, but it made me extremely uncomfortable at the time. Bhattacharya was completely uninterested in the material that I had brought. This, of course, upset me, as I had done a considerable amount of research and had contacted numerous people who specialized in Graves disease research.
I stressed to Raj Bhattacharya that I was not interested in having RAI (Radioactive Iodine), which he thought was ridiculous. Yet, we managed to get through the appointment, and I asked him what my next step was. He suggested I get a thyroid scan! A thyroid scan involves a small amount of radioactive iodine be put in your body, so that the thyroid “glows” when it is scanned.
I was so upset and told him that I refused to do that. He said that he couldn’t be my doctor, and I told him I understood. I really didn’t understand though. I didn’t understand how you could be a doctor, who studied for years, familiar with the benefits of research and didn’t want to bother to look at the information I brought to you? The treatments for Graves disease are by no means perfect, so there is no harm in looking into more options, right? WRONG if you’re Bhattacharya.
At least Richard Hellman respected my wishes to stay on my antithryoid drugs. At the time, Raj Bhattacharya was only 6 years out of Medical School!! 6 years and already so closed minded he doesn’t know how to a treat a patient. Pathetic. I would never recommend him to anyone, and that’s why I am posting this, so if you are considering him for a thyroid doctor–think again! He is an example of a endocrinologist whose practice is 80% diabetes, 20% thyroid–5% of which is Graves disease.
Oh and to top things off, I told the docs at Mayo about how Raj Bhattacharya told me that I had to do a thyroid scan in order to figure out if it was Graves disease….and the Mayo doctors told me that they had never heard of such a thing and a thyroid scan was completely unnecessary. This made sense, as the 3 endocrinologists that I had been to before Raj Bhattacharya had never recommended one to test for Graves disease. It is really scarey how a medical doctor can be that full of themselves that they don’t look at information/research that was brought in for them! These are doctors that actually treat people! YIKES.
So I finally got in touch with Dr. John Miles at the MAYO Clinic in Rochester, MN. On April 3, 2008 I had blood tests starting at 6:45am and then I saw Dr. Miles at 10:45am. I then saw Dr. McIver the same day but at 2:45pm in the Division of Endocrinology, Thyroid Clinic Consult. On Friday, April 4, I went to the Pulmonary Function Laboratory for the Resting Energy Expenditure–this is basically to get an idea of my functioning metabolism. I have gained over 60 lbs. while having Graves disease due to the fluctuation in my hormones, etc.
This is a shot looking into the Entrance to Mayo 18 West
The waiting room at Mayo 18 West
As promised, I am writing to give you an update on my visit to Mayo.
I arrived on Wednesday, April 2 at about 8pm. My first appointment at was 6:45am for a blood draw.
The lab was very cool. Huge waiting room and there was probably a lab tech coming out every 30 seconds calling someone’s name, so I didn’t have a long wait.
My next appointment was with Dr. John Miles. Dr. Miles is from Kansas City, and he is the reason I was able to get into Mayo in the first place. We reviewed the usual, like my diet, my cholesterol (which was perfect), blood pressure, weight, etc. He then examined my thyroid – noting that it was enlarged. He checked my hands for tremors (shakiness is a common problem for people with Graves disease) and hit my reflex joints to see if I would react to them — almost all endocrinologists have done that to me. Makes me giggle every time.
My appointment with Dr. Miles was more for the purpose of getting into my other doc appointment with Dr. Bryan McIver.
My appointment was at 2:45, but I didn’t meet with Dr. McIver until about 4pm. Since going to Dr. Richard Hellman, I am used to waiting that long and although it pissed me off when I was with Hellman, it didn’t bother me at Mayo because I figured there was good reason for it and there was. The lady before me was trying to decide on whether or not to do Radioactive Iodine (RAI), have thyroid surgery (complete and total removal of the thyroid gland) or staying on anti-thyroid drugs (ATDs). ATDs are my current protocol for Graves disease.
So my mom and I met with Dr. McIver. He is originally from Scotland and was trained in Edinburgh which delighted me to no end. When I first was told I had Graves disease I did some research and contacted both American and European doctors and found that European doctors were more apt to keep you on the drugs for a longer period of time–instead of the quick fix of RAI. There are three types of ATDs. I am on methimazole which is the generic for Tapazole. I am going to switch to propylthiouracil (PTU), which is what McIver recommends to women who are pregnant, so I am under the impression that it is safer and apparently under the impression that it will do me some good. It has to be taken 2-3 times a day because the drug doesn’t last as long in your body.
As far as Graves disease is concerned, McIver thinks I have had Graves disease since the mid to late 1990s. The reason he thinks this is because my original blood work from Mitchell Hamburg in January 2002 did not show extreme Graves disease, in spite of the size of my goiter (this is what they call your thryoid when it gets big). So he thinks that my body has been compensating for this overactive thyroid for quite some time.
My internist never took my blood. I hated needles and would beg her not to have my blood work done. I was young at the time, so she didn’t see the need to press the issue. However, I think had I had my bloodwork done, starting in the late 90s (when I was in my late teens), I believe Graves disease would have been discovered in me sooner than it was. Ironically, I started birth control in the late 1990s when I was 17. If you continue to read this page, you will realize that me getting off birth control at the age of 29 (after being on it for 12 years) might be an interesting aspect to the catalyst of the Graves disease. In other words, I strongly believe that birth control absolutely affected my body reacting the way it did and the possible reason for the Graves disease.
My thyroid produces a hormone, T4, my liver and kidneys then transform that into T3. He suspects that my T3 is messed up at the moment and that might be the reason for weight gain or side effects, like irritability, excessive thirst, etc. My T3 wasn’t tested in the lab yesterday, so he called the lab and they had enough blood left to do another test for the T3. I am still waiting on those results–as they weren’t back yet even when I met with Dr. Miles today at 11am.
Basically, with Grave’s, your immune system confuses your thyroid for a foreign body and starts attacking it. The thyroid’s response is that it overproduces thyroid hormone because it is confused…he said the neat thing about Grave’s is that your thyroid organ stays fine–there aren’t any lesions or damages to it because your immune system sends out white cells and antibodies and they latch onto my thyroid creating a protective coating around my thyroid. So knowing my thyroid isn’t doing anything wrong, I really don’t want to kill it and I don’t want to remove it.
Mom asked him what to do if I ever got pregnant and he said that I would need to be on the PTU drug and also need to see a doctor that dealt with high risk pregnancies. He said that they would probably take me off of the PTU in the second trimester because in your second trimester, your immune system basically shuts down…so it stops attacking your thyroid!! I need to be pregnant in my second trimester all the time then! Actually, I was seriously wondering if you could make your body think that you were in your second trimester of pregnancy so my immune system would shut down and start back up again. I wonder if a re-boot to the damn thing would do some good.
Probably the neatest thing about McIver was that he was willing to let me stay on my ATDs for awhile longer. Most endocrinologists that I have gone to will not allow me to stay on my meds and want me to get RAI done as soon as possible. I asked McIver how I could get him to be my endocrinologist and he said all I had to do was ask. So I asked. He said yes. So, twice a year I will be going to MAYO to see him. And the rest of the time I will get my blood drawn in Kansas City to make sure that my levels are okay.
I brought all my herbal supplements with me–some of you know that I have been doing NAET (www.naet.com) with Sandra Karr in Mission, KS, and she has recommended a number of herbs–from stuff to help my adrenals to general vitamins. He was curious to know what they were all about. So he looked at all of them and said that I needed to get off the iodine which I have been on for about 8 weeks. Iodine is a bad thing for people with Graves disease to take because iodine basically fuels the thyroid fire that is happening in my body. Although the iodine has helped tremendously with my sugar and other cravings, I do think it has been fueling the fire since both McIver and Miles thought my thyroid was much bigger than normal and the last time I saw my regular endocrinologist, he told me that it had shrunk to almost normal size. So I guess it will take 3-6 months for the iodine to get out of my system and I will have my blood taken once in Kansas City before I head back up to Rochester, MN.
McIver mentioned that he has had people with Graves disease have success with holistic treatments and herbs (he mentioned rosehips and cranberry extract in particular). Luckily, McIver is not opposed to holistic medicine. In fact, he mentioned that the neat thing about the holistic approach is that it tries to improve my immune system, rather than the thyroid. After all, my thyroid isn’t doing anything wrong. So he was alright with Sandra Karr trying to fix my immune system that is acting like an idiot attacking my thyroid. Stupid immune system.
This morning I did a respiratory metabolic breathing test (went to a room with a bed, laid there by myself for 20 minutes with a pulse thing on my finger and then the nurse came back in after 20 minutes and put some hood on my head for an additional 15 minutes…so they figured out that I burn about 2000 calories while I am sleeping. I did fall asleep and was having a terrific dream, so it was a bummer that I had to be woken up) and they found that my metabolism was 14% higher than they expected. I also met with a dietician and will, of course (SHOCKER), need to make adjustments to my diet. I am anxious for T3, as I suspect McIver is right about that one.
I would appreciate any feedback, questions, comments or concerns that any of you have so that I can investigate this sucker to the end.
I DO NOT WANT RAI and I would prefer not to have my thyroid removed (if I do, I am coming to Mayo to do it).
April 2008
Insomnia. I new side effect I am experiencing…I believe this is a result of my iodine supplement (now discontinued). Will look forward to this being over.
Since I couldn’t sleep, I read through more Graves disease Stuff and asked the following questions of Dr. McIver.
McIver: “The insomnia almost certainly reflects the overactive thyroid, stimulated in part by the iodine excess….. Should settle as the thyroid hormones settle, but it’s certainly a nuisance.”
1. Has he seen this website?
Elaine Moore’s website.
The website information is perfectly sensible and reasonable. Specifically,
the advice to limit iodine, and use goitrogens makes good sense (a lot more
sense than the iodine supplements you were being advised to take!). PTU and methimazole are derived from plant goitrogens, so they function exactly that way! The rest of the stuff refers to the same types of lifestyle changes that we discussed: sleep, healthy well-balanced diet, good mental, physical, emotional and spiritual health — all of these have a real impact on immune function. The acupuncture and herbal approaches are of uncertain benefit, but have good sense behind them, even if they don’t come with a guarantee of success.
2. This bone marrow (ATDs making it sick) is totally stressing me out.
Bone marrow is best checked simply with a CBC — your white cells are OK, so we know there’s no major harm. If the drugs affect the bone marrow, it isn’t going to be subtle, and we certainly don’t need to go sucking out samples of bone marrow to check it out! Quit worrying about it in the short-term, since we’ll be monitoring for this in any case as part of your follow-up.
3. Any chance I could go off ATDs and try all herbal? (I ask this because of question #3 and my worry about my bone marrow).
If you stop the PTU / methimazole now, particularly with all that iodine on
board, you are likely to send your thyroid hormone levels through the roof and end up in trouble. The time to go “all herbal” is when you have had the thyroid stable for a few months (my preference is 6 – 12 months at a minimum), and then undertake a planned withdrawal of the drug. No harm in starting the herbal (and lifestyle things) now, but don’t stop the drug!
4. When I start this PTU, he wants me taking 3 pills, 3 times a day. I have two concerns – if I miss a dose, do I double up? Do I need to take the doses every 8 hours? There are some Saturdays that I like to sleep for 10 hours, so I would like to know if I need to set an alarm clock to wake up.
The starting dose for the PTU is supposed to be ONE tablet (50mg) three times daily (not three, three times daily!). Three tablets per day was what I
recommended, and also what Dr Miles wrote on his prescription. Missing one is not a disaster, so don’t double up on the next dose if you miss one. If you’re late getting up, simply “squeeze” the three tablets into the rest of the day. Don’t try taking them all at once, but certainly don’t set your alarm clock to wake up and take the tablet!
6. Please share email I got from Elaine Moore (author of Graves disease book) on 3/5/08. I am curious specifically about the second and fourth paragraph. Curious to know if he has ever put someone on levothyroxine. Also, wondering what he thinks about selenium and amino acid acetyl-1-carnitine being added to my herbal/vitamin cocktails daily.
I published one of the first definitive medical studies on the “block and
replace” program back in 1996, based on work we did in Edinburgh on treatment of Graves disease. We demonstrated that this approach of “putting the thyroid to sleep” did not have any advantages over the “lowest possible dose” approach, at least in terms of long-term outcome. There are a few people whose thyroid hormones fluctuate a lot in whom this approach can be more stable. However, it involves higher doses of the PTU or methimazole, so the risk of side effects is probably slightly higher. I will enclose a copy of the paper, in case you are interested.
Selenium is an essential co-factor for thyroid function. I am not aware of
any scientific data that shows benefit (or harm) from selenium in modest dosese. Similarly for the acetyl carnitine. However, I have no objection to trying these, if you wish to do so. They are not going to be harmful!
I asked the good Doc (Bryan McIver) to sign my copy of the book, which I bought online. He asked if there was anything I wanted him to write. He wasn’t terribly optimistic about my Graves’ disease when I first started going to him (afterall, having it for 6 years didn’t get me to the top of the remission list). So I asked that he said, “Let’s Beat This Bitch!” He “sorta” did. I took a photo, just for fun.
Update May 6, 2008
I started acupuncture today. I am going to a man in Kansas City named Chris Powell. He says he has had success with people with Graves disease so we will see how it goes. I will, of course, keep you updated. Write me an email if you haven’t heard from me in awhile. Or send me a question to ask McIver. I continue to communicate with my doc at Mayo, Bryan McIver. I asked him some questions and thought I would share them, in case you’re interested.
1. Is there a link to thyroid Graves disease and your racial heritage?
Very definitely YES. Scots / Irish / “Viking” all have high risk. So do the Japanese. At first we thought the difference in race might explain the different results, but later studies from Japan agreed with our findings.
2. What is carbmazole? What if you did carbmazole and T4 longer?
Carbimazole is the same as Methimazole. Longer-term treatment with these drugs carries all of the concerns that we’ve discussed in the past re/ Methimazole, but more so, because the combined therapy involves continuing high-dose antithyroid drugs.
3. What do you do when someone is allergic to ATDs? (asking for my knowledge and understanding and curious to know if there are alternatives).
We move on to radioactive iodine or surgery, for people who are allergic to both available drugs (PTU and Methimazole).
4. Do you believe there will be or is he interested in finding a solution to treat the immune system as opposed to the thyroid gland?
Eventually that may come, but not any time soon. Huge advances have been made in the understanding of autoimmune disease, but there is a real challenge with MONEY to fund research in this area, and the availability of good treatment options (surgery and radioiodine as well as drugs) makes this a low funding priority.
5. Is there a way to be synthetically second trimester pregnant? I am on a Graves disease Support Group through Yahoo! Groups and these stories about women in second trimester pregnancies are incredible!!
Pregnancy modulates immune system function SAFELY. When we find that magic, we’ll be able to fix thyroid Graves disease, I’m fairly sure.
6. I am still hating PTU…I think that metal-tasting is messing with my skin. (oh yeah, what makes it taste like metal?)
The taste comes from the similarity of this compound to the compound that makes garlic taste like garlic. I’m not aware of any link to skin problems. The taste issue will fade as the dose is (eventually) lowered.
June 8, 2009 Update
In April of 2008 I was switched to PTU (Propylthiouracil). I just wanted to try PTU when I was told by my awesome doctor at the Mayo Clinic, Bryan McIver M.B., Ch.B., Ph.D., that’s what pregnant women are put on instead of Methimazole (because it is safer for the baby). I thought, “Then why wouldn’t it be safer for me?”
On my last visit to the Mayo Clinic in Rochester, MN., which took place on May 6, Dr. McIver told me that he is cautiously optimistic that I am headed toward remission. I attribute this good news to getting off of birth control. If you are on birth control and can get off of it, I suggest that you do–why not see if that might be contributing to your Graves disease?! Dr. McIver does not believe that extra estrogen is a PREDICTABLE factor. I think the added estrogen in my body did something to my overall hormone levels and imbalanced the chemicals in my body.
I have been off of birth control for over 8+ months and in those 8 months I have gone from 2 pills/day of PTU to 2 pills/week, not too shabby.
I have had Graves disease for 7 years and my doc gave me two more years (I begged him because 8 is my favorite number, lame, I know, but really felt it in my gut to do it this way) to see if i went into remission, so I could avoid RAI (Radioactive Iodine).
I took herbs forever and then stopped because it just didn’t feel right in my gut anymore. Although, all my trips to holistic folks did help me become more aware of my body and how and why MY BODY react to things.
All for now,
Jenny
Please contact antioxidant-fruits.com if you have additional questions.
June 28, 2009 Update
Wrote McIver with the following inquiry:
“my thyroid is still very beefy. i dont feel hyper, but rather hypo. is there a pattern like that when you get off the anti-thyroid drugs after so many years?”
His reply:
“Yes, it’s normal to feel a bit “hypo” and to have a “beefy” firm gland after a long time on anti-thyroid drugs. Hopefully, we can progressively get you off those drugs altogether, with long term remission being the real goal here……”
…glad I’m “normal”.
July 9, 2009 Update
Wrote McIver with the following news about the Graves Disease situation:
what up, doc?
as august draws nearer and as i anxiously anticipate my blood results for 3 months after my visit with you, i continuously am noticing changes. mostly for the better, except for the few hypo symptoms i have previously complained about.
i used to pee as frequently as a pregnant woman. my thirst level has gone down a lot and as a result, i am not drinking as much and not peeing as much. it is really nice. i love it. in hindsight, i didn’t realize how much of a crazy person i was!! the frequent trips to the bathroom were only a pain during that one week/month that only women get to enjoy. but really, the best thing is that i enjoy the lack of cotton mouth i used to feel all the time.
the biggest change i have noticed and as previously mentioned, is in my hair. it’s almost normal again, although the quantity of hair is still down, the feel of it is back to normal and for the first time in 5 or 6 years, i actually blew dry my hair and wore it down for a wedding last weekend. this is a milestone. might sound superficial, but believe me, it is not.
also, my sweet cravings and other cravings have reduced significantly. i no longer feel like a crazy person with my cravings (basically, before there was no stopping me from getting what i craved). i believe this lack of craving will help the pocket book a bit. it’s delightful and freeing. **hugs** all around.
so, you really don’t need to know all of this, just thought i’d give you an update and say thank you again. keep those fingers crossed for that august bloodwork. i am anxious to get off of this medication!
jenny
His reply:
Thanks for the update.. It all sounds promising….. I remain cautiously optimistic for the long-term.
November 11, 2009 Update
Go to see McIver on Friday. He has requested an ultrasound of my thyroid (much better than a thyroid scan, as a thyroid scan requires you take a small amount of Radioactive Iodine so that your thyroid glows during the scan). I was curious about the ultrasound for my thryoid to check the status of the Graves disease, here is our communication.
I wrote:
everyone that asks me about my thyroid gets an ear full about the anxiety i have for the ultrasound on friday.
so…my massage therapist asked me today, “what is he looking for by doing that?” i said i didn’t know.
so…doc, why you want an ultrasound? perhaps that will relieve anxiety.
thanks,
jenny
His reply:
Shape, size and texture, and blood flow. All help me to finesse my level of concern about recurrence of the overactive thyroid. If the gland is big, juicy, with lots of blood flow, you’re at higher risk for recurrence……. small shrivelled and lacking blood flow, very likely to be stable in remission.
I replied:
Shit. I fear it’s big and juicy. I’ll envision it being the other. Must follow protocol for Operation Bye-Bye Graves Disease.
Do I get a DVD to take home? So I can show my friends? That’s sort of a joke but not really.
I mean if I have the ultrasound done at 8am, and don’t see you until 1pm…do you watch the video of it or read what the tech person says?
Thanks,
Jenny
He replied:
You and I will review the images of it, and read the report.
Update – November 15, 2009
Update – November 15, 2009Drove up to Rochester on the 12th and had my appointment with McIver on the 13th.
Well, well, well, folks…All the prayers worked! He has classified me as in remission from Graves Disease! Bloodwork is perfect! Ultrasound was good (gland still large)! Off medication in 6 weeks and the bloodwork 6 weeks thereafter. He says he gives me a 75% of not getting Graves again. Which he says is a pretty favorable prognosis. It was soo cool to see my perfect thyroid levels. Especially since he considers two pills a week as not on meds. 6 weeks I get off meds! That’s a Merry Christmas 2009, Jenny Dean!
Read my tribute to my Graves Disease, “Oh Graves Disease what you put me through!!”.
Ultrasound Photos are posted below.
Ultrasound of Left Side of Thyroid
Ultrasound of Left Side of Thyroid – Blood Flow
Ultrasound of Right Side of Thyroid Nov 2009
Ultrasound of Right Side of Thyroid – Blood flow Nov 2009
Mayo Bloodwork from 3 Apr 2008 to 13 Nov 2009, monitoring Graves Disease
Note: October 2008 I stopped taking Tri-Sprintec, a generic form of Ortho-Tricyclen Birth Control. Look at how much my TSH level improved as a result.
Update – February 22, 2010
McIver finally got my blood results (got it taken on the 15th of Feb)…GREAT NEWS!
TSH = 2.97; (Total)T3 = 105; (Total)T4 = 7.2
McIver says, “Remission, now stable for a period of time. Couldn’t ask for better. Recheck in about 3 – 4 months…….CONGRATULATIONS!!”
Update – October 19, 2010
TSH: 3.1
Free-T4: 1.1
Total-T3: 103
Vitamin D was 21 (ideal is 35+).
Normal blood count, chemistry, liver and kidney function. Glucose was 96.
Update – September 26, 2011
Went up to Mayo for my annual physical (I’ve asked McIver to be my full time doc – since he is an internist and also a thyroid doc, works perfectly).
Here were my thyroid blood results:
TSH = 2.7
free-T4 = 1.2
T3 = 109.
McIver said, “All perfect. In remission. Stable!!”
He also requested an ultrasound, so there will be more ultrasound pics to come soon!
Related Graves Disease Topics on this site
- Graves Disease Links
- Graves Disease
- Oh Graves Disease what you put me through!!
- Graves Support Groups
{ 243 comments… read them below or add one }
Hi Jenny,
Fantastic blog and wonderful information. Congratulations on your remission and for keeping such a detailed account. Best, Elaine
Elaine and Jenny, I have only stumbled on this blog today but I have been in remission for several months and totally off meds for 3 months. (I think I was in remission sooner but wanted to wean slowly off meds as it was just too good to be true!!) Feeling the best I have felt in years. I had a very stressful time before onset of Graves. All of my circumstances have changed now and I am stress free, have learned how to control stress when it does arise and know that it’s important for my health to keep on top of it. I am not surprised that I am in remission as I no longer have the factors present that caused it in the first place. I too didn’t think it made sense to do RAI and/or Total/partial thyroidectomy. I was determined to research and find alternatives and staying on the ATDs made more sense, slowly lowering the dose over 3 years. It has taken me 3 years but most doctors only give you 12 months to achieve remission on atds otherwise it’s a radioactive pill or the scalpel. Elaine, your website and information was a god send to me and one day you will get the full recognition you deserve. You have helped many people, informed and empowered them to make educated decisions about their medical treatment.
Jenny, it’s people like you that give hope to so many and give them a reason to fight through the disease and get to remission. I feel terribly sorry for all of those patients that have been bullied into RAI only to find that their chance of remission is nil. I think it is malpractice when they replace one disease with another without really exploring the patient’s chance of achieving life long remission.
But what do I know?? I’m just the patient!
Lisa
Lisa, first and foremost, CONGRATULATIONS! Thanks for the compliments, Lisa. I so needed a blog post like this one when I was going through Graves, so that’s why I created it – well and also because my doctor, Bryan McIver at the Mayo Clinic in Rochester is the best thyroid doctor there is, so I wanted him recognized.
Lisa,
Congratulations! And thank you for sharing your news with us, I too, opted out of the RAI choice given by my dr. on the day I was diagnosed (1 year ago this week!) I had the weekend to think about RAI because the procedure was schedule for Monday, I’m so glad I chose NOT to do it and my doctor was totally on board with me trying the ATD first, for as long as it takes.
I’ve been euthyroid (sp?) since August and am on 2.5mg methimazole every other day and I feel great. There are days I am sure I am dipping into hypo and so I adjust accordingly. I will continue to do this until I am in remission because that is my goal. and I will do it without RAI! So good luck to you and hopefully some of us can achieve what you have!
Dianne
congratulations! God Bless you!
Thank you for this blog. I have had Graves disease since Aug 2009. I recently miscarried and am hoping to get pregnant again. My thyroid levels were really high before the pregnancy, near normal during the pregnancy and then re-surged after the miscarriage.
Two weeks ago my T3 levels were really high. As of Friday, I am near normal again and wondering about trying to get pregnant. I was just about to go on PTU when my levels decreased.
My doctors recommended radiation too, but I had similar thoughts – why remove it if there is a chance of remission? It’s my immune system, not my thyroid – so I’m on blood tests every two weeks to monitor in the mean time.
Did you ever have eye problems? I’m paranoid about Graves Opthomology. My eyes have been light-sensitive and puffy for a week and I’m afraid it’s the onset of this disease.
I will see if I can find you on Yahoo! It’s so hard to get personal accounts of the disease and I need support.
No, I never had eye problems…thank goodness! I will e-mail you…
I was diagnosed about two years ago and luckily went into remission about a month and a half after diagnosis. I saw Dr. Kallsen then too. Now the Graves is back and I’m seeing Dr. Silver. I’m really glad you mentioned gaining weight with Graves. I didn’t have any symptoms when I was initially diagnosed, but this time I had plenty of symptoms. My blood pressure got to 144/90 at rest so my dr put me on a beta blocker and scheduled me with Silver the next day. I told him I’d been experiencing tremors, high blood pressure, high heart rate, excessive hunger, night sweats, etc but since I wasn’t experiencing them at the time (started the beta blocker the day before) he got the idea that I didn’t have many symptoms. Plus, I’m not hefty but I’m not stick thin, so I obviously couldn’t have Graves right? Wrong… I already knew what they finally figured out from the blood results. And now I’m scheduled for a scan in a couple of weeks – totally against RAI, but not sure about the scan… The problem is that my blood pressure continually gets worse, so I’m not sure my body can afford for me to wait for treatment as I find another doctor.
i’m 22 years old and have been on ptu and propranolol for a while now. my doctor also wants to do the RAI but now i’m kind of thinking i should just stay on my meds. for a while longer i’ve had hyperthyroidism/graves disease for a year now. do you think i should stay on my medicine and see where it takes me?
Are you on birth control? you have to make the decision for yourself. I am not a medical doctor and cannot advise for or against it either way. However, I do think it would be wise to discuss your options with your doc. American doctors typically keep a Graves patient on meds for 2 years and then suggest RAI or surgery. Elaine, who wrote the Graves Disease book, told me that she has seen the most success of remission with folks that are on the medication for 8 years. Ironically, mine happened in year 7. But I was also off of birth control, which I am pretty sure was the catalyst for my disease.
Thanks for sharing your experience. I have been on methimazole for Graves for the past 10 months. I started out at 40 mg a day and am now down to 15 mg a day. I feel like I am being pushed a little to choose between surgery and RAI when I want to stay on the meds for awhile longer to see if I have a chance at remission. I also live in the KC area and have been seeing Dr. Mini Abraham. Have you had any experience with her? I feel pretty good right now. Of course I have gained some weight, but my hyper symptoms are gone. I was having a lot of muscle cramping and soreness after a few months on the meds, but feel better now with taking a vitamin D supplement.
How are you currently doing? Have you stayed in remission? What do you do to keep healthy? Do you limit anything in your diet? What doctors/other medical professionals are you currently seeing? How are they treating you? Any information would be helpful. I have been dealing with bouncing from Hyperthyroid/Graves to hypothyroid/Hashimotoes for many years! There are other medical challenges as well including growth hormone deficiency, vitamin deficiencies and fibromyalgia,etc…
Janette,
How are you currently doing? Just fine.
Have you stayed in remission? Yes. I have another appointment at the Mayo Clinic on October 19, 2010. I will have a more accurate idea of blood work then – but last set was perfect.
What do you do to keep healthy? exercise somewhat and eat well somewhat.
Do you limit anything in your diet? NO!
What doctors/other medical professionals are you currently seeing? Still seeing the Fabulous Bryan McIver at the Mayo Clinic in Rochester and my internist here in Kansas City
How are they treating you? I am not on any medication. They are just monitoring my blood work. I strongly believe birth control was the reason for my Graves and believe if I stay off of it, then I will not have a reoccurance.
I am sorry to hear of your troubles. If you can make it to the Mayo Clinic to see Bryan McIver – I WOULD GO! I wish I wouldn’t have waited 8 years – I am still dealing with losing the weight I gained from my crazy cravings.
McIver does ask that you get a referral from your current doc – as it makes the admission process into Mayo a lot easier.
Jenny
What a beautiful blog, you’ve done a great job in teaching and opening up your heart and research. I’ve been diagnosed with graves disease 3 weeks ago and i also think I’ve had this for years now. People would notice this huge lump on my right side the size of a banana, finally i went to get it all checked out. I also don’t want the RAI done on me at all, in 2 months i get rechecked again. I’m on methimzole for the GD and propranolol for my super fast pounding heart even when I’m resting. Were you experiencing your heart acting different from this disease ???
Thanks for the compliments on my blog.
Yes, there was a rapid heart rate with GD – but I didn’t take an additional medication for it.
Are you feeling better after being on it?
Do you like your endo?
Jenny
Thank you for your response,
I do feel better less shaking and other symptoms are also a bit better. My heart pill does help and i think my lump is smaller but some people say it looks the same, who knows for now until Nov. 20th. The only thing about taking these pills i feel like vomiting most of the day:(((( I love my endo, his name is Dr. Cheung he toke his time with me and gave me printed out info on the disease and aslo meds. How are u feeling lately?
Carla
Hello,
I’ve had Grave’s Disease for 6 years now and I haven’t gone into remission.
I just read through your updates since I was curious about going on a birth control pill to help with hormonal acne. But I guess it’s obvious that you are don’t think that would be a wise idea. Could you give me some resources about this, I can’t find much about birth control and hyperthyroidism. If possible, some information on medications that won’t affect my thyroid but will help with acne will be great too.
Thanks,
Betty
I also have Graves, it sucks so bad. Thanks for your blog, I think I will stop birth control pills now, Ive been taking them back to back (no periods) due to anemia. Glad your in remission, hope I get there too!
Loved your story! I was diagnosed in 2001 and have been in remission for about a year now. Follow up is in Jan. 2011. I had all the crazy symptoms. I refused RAI also, and so glad I did. Went to 4 doctors and finally found a good one here in California. Bed side is great! Although he did recommend that I do RAI, but was ok knowing I refused. My Dr. told me that even though I am in remission I could still have some Graves Disease symptoms. Have you had any and could you ask your Mayo Dr. if that is true?
Thanks,
Kahla
I will ask and see what he says. Would be interesting to note. You are also always at risk to get Graves again.
Here’s what he said, “Graves; disease is a multi-organ disease (eyes, skin, thyroid). Treating thyroid only treats thyroid (whether that’s with I-131, drugs or surgery). However, remission following drugs often indicates remission (or at least quiescence) of the systemic disease…..”
Hello, I was also diagnosed with Grave’s disease a few months ago and I am doing a research and presentation over Grave’s disease and Hashimoto’s thyroiditis. I would like to get permission to use your sonograms in my presentation. Please feel free to contact me if you have any questions.
Thank you,
Lisa
Hi, i have been battling graves for almost 6 months. (hyperthyroidism) I have good days and bad. I going Friday to see my endo for the first time to really talk about what shall we do. I take beta blocker and methimzole. I have to go. I got so much to share and finding.
Lady,
Good luck on Friday. I think most American docs keep patients on ATDs (anti-thyroid drugs) for 2 years at least.
Jenny
6 months ago, i went through a storm. I didn’t know it, because i’m always hyper active. Then i started loosing weight drasitically 22 pounds in 1 month – I loved it– but was scareed. I started thinking bad throughts, hollering, Anixety attacks. I went straight to the dr. My doctors immediately knew what was wrong. She put me on 40gram of Propronol (beta blocker) once a day. Then she put me on methimzolem, 10 grams 2 times day. after diagnoising me with graves – She rand all the test.l – I love my dr. She called mein to explain what was happening to me. took all the blood work – serveral times to determine my ailement. I went through the itch – gone now. My left eye buldge a little. I older my Joints hurt, eating everything -but not gaining weight. I love it. Then the medicine started kicking in putting my tshish back to normal. Weight gaining rapidly. I’m made now. I started slowing down on eating. The medicine is doing what it is suppose to do. but. . . .. I cut down on half. I cut the pills in half because i feel that i ‘m going into HYPO. I learnt some things on the web reading and analying – Now i ‘m a doctor. hahah. Anyways, I’m trying to wean myself off the medicine. Cause i feel like HYPO is on me. I know it time for another blood work, I just throught about it yesterday, 11/15/10 – the phone rang and it is the Endo???calling to let me know that i have an appt for Friday to see them. I told them i didn’t make and appoint. They said your dr did. i said ok, i be there. Now from reading book and my own observation this GRAVES – is stress related and i believe it. I put myself into this situration. taking on to much of other people responsiblilty, holding on to pass hurt, and broken heart. I prayed and i’m on my way to recovery. I try to stay stress free and release the past hurt of people who have hurt me mentally, and forgive them. I brought Herbs, Fish oil. Calcium, D3, and a few more, Today, End result – i’m doing great and i feel good. Little joint hurting, Little hottness on me sometime, little negative thinking crosses my mind about my separation, then divorce . . . . .I getting better. The Graves manule book helps alot.-Svetla Bankova. Anyways, I go for my Endo on Friday. I don’t know why i’m going – I guess to talk. I know that i do not want my thyroid out and i feel like i going into remission, whatever that mean. If it a good thing, then i feel that is where i’m heading. that is why i cut them in half. sorry for the spelling, but i can’t find the spell check haha. Thank you for listening. and i hope it helps us. this websit.
Thanks for telling your story – i think it absolutely helps other Graves disease patients. I think we are given things and it helps us put life into perspective and looks like you’ve done that! Congrats.
thank you for this very honest description of why you feel you got graves disease i can total relate to this as its my exact story. you have wrote my story, im still dealing with graves ophthalmology eyes, its tough going Ive had radiation treatment recently and my eyes got really sore so they had to increase the dose of steroids to calm eyes down they were red and bloodshot. steroids are working but thing is i crave n crave for sugar and sweet things and have put on over 18lbs so i went from having a lovely figure to reaching 12stone in weight so you get lots of highs and lows with this disease .Im from Ireland and loved this blog
Talk to u guys on Monday. I’m going to tell them (endo) what i been doing. And see if they object to me cutting my pills in half and taking my own matters into my hands.
My guess is that they won’t be thrilled about the idea – but as I learned – good to go with your gut. Good luck!
Yeah, but as long as i feel good, that’s all that matters. Autoimune is your body. how you treat it. I have been watching my DVD lately “the secret” It has been motivating and inspiring me along with my book from -The Manuel on Graves Disease – Svetla Bankova – as well as other book. But i purchased Svetla and the other handouts that came with it. It has a lot to do with your mind-set as well. Anyway. I feel good 95.9%. the others is just watching the scale go up ahhaah
Yes, I have seen the Secret and totally believe in it!
While i can’t share my endo experience. I had to reschedule. I got there a half and hour late. I go again on December 6. I feel good though. I experienced my first real dry eye syndrom. I was using blur eye visinine- it was ok. I got some synteal (forgive the spelling) eye drops- mild to moderate, and my eyes feel good. Going dancing tonight, despite all.
I was diagnosed to have hyperthyroidism last 2008 and took medication for about 5months,i wasn’t treated,instead i was overdosed,my doctor advised me to have RAI, but since i was afraid,i just stopped taking my medicines & stopped seeing my doctor,after one year of not having medicines at all,i took a blood test for my TSH & FT4, it just normalized without me taking med.i just had to watch my diet, eat only those who are good for my thyroid and boom i think i was even more brilliant than the other doctors who only love money from their patients.Actually i never trusted any doctors, i think they only makes me more ill.
Congrats on the good news on your blood work. I know what you mean about doctors – but there are great ones out there – like Bryan McIver at the Mayo Clinic!
hey, Yall, Its me – Lady- I am still doing fine. I called my Dr., and told her that i miss my appt and that i was going back Dec 6. I went on to tell her that i feel great. Little dry eye every now and then, weight coming back, joint pains going away. Feeling like myself again. I never stop dancing. I stop when i think about my hyper….Then i would said – Jump, Jump. My dr made blood work appt for day. She wants to see where my tshssss are before Dec 6. Hope all is well. Oh, by the way, rie. I hear you.
hERE ARE MY BLOOD RESULT FROM 12/1/10
THYROXINE 9.46 4.60 – 12.00 ug/dL
T3 UPTAKE 1.03 0.76 – 1.25
FREE THYROXINE INDEX 9.74 4.40 – 11.40
I am waiting for my dr. to tell me what these number mean: They look in the normal range or mid???
I don’t know the ranges – I always just looked at the blood work because it would show the normal range. Of course, normal ranges sometime vary depending on the hospital too.
Jenny
Where you put on a beta blocker. Which thyroid meds were you on? I am starting methimazole next week and I wanted to just start low so he is letting me take 2.5 three times an day. I am wondering if I should take a beta blocker for anxiety and dizziness.
Thanks
Hi Brenda,
No, I was not put on a Beta Blocker. I will inquire with my doc why that was.
I was started on Tapazole, then I moved to Methimazole (for $ reasons) and then for the last year or so I was put on PTU – stuff has a NASTY after taste – but my doc had said that’s what he puts prego women on because it’s safer for the baby. So I was like, “If it’s safer for a baby, then it’s safer to me! Let’s switch!” and so we did.
I didn’t have a lot of side effects that I was aware of during my Graves. I don’t know what Beta Blockers do.
Jenny
Brenda,
Already heard back from my doc – he is the best thyroid doctor in the world – I’m convinced. Here’s what he said:
“Beta blockers are useful for symptoms control in people whose thyroid is overactive and not yet controlled. The specific symptoms these drugs help include fast heart rate and palpitations, tremor, and sometimes anxiety. Side effects include cold hands and feet, low blood pressure, sexual side effects (especially in men), fatigue and malaise. The drugs do not influence the disease process, nor do they alter thyroid hormone levels.
Hope that helps.
Bryan”
Jenny
Hello, Hypers. (smile) My doctor told me that my ranges were still slightly high and she doesn’t want me taking half of the medicine every other day. She wants me to be consistant. if i’m going to take 1/2 take 1/2 everyday until i go to the endo in March. The other appoint was a duplicate. I don’t go back until March. I take 80 mg a day for my heart. and 10 mg a 2xday for my thyroid. So i have been cutting them in half for almost 2 months now and taking every other day. – that why my blood count was still high. My dr was a little pissed and cool at the same time. So i will take 1/2 of each every day. Hope all is well
Hello All,
I’m Kimberly, 52 yrs old, who obtained Graves from severe pneumonia. My Endo is okay, Robert Revers in Salinas, CA. Had me on beta-blocker and PTU, 2 tablets of 50 mg 2X daily. I could not tolerate the methimsole. I lost 25 lbs in three weeks while I’ll. I have gained 12 lbs in the past three weeks and have now stopped taking the meds. Dr. Reveers is not thrilled but will give me one month. I too had the cravings – just cannot stop eating. And I have rage issues. I do not act them out to others but this weekend slammed the garden hose and the sprinkler head broke and hit me in the face for seven stitches. I too had the scan, which showed severely increased uptake, and the ultrasound which showed “inferno.”
I want to try the herbal therapy and diet. I have purchased two books online and should receive them later this week. I fear the medicines. and I have my doubts about obtaining a “disease” from an illness. I thing I was so ill that my body, including my immune system when crazy, thyroid and hormone levels included.
I had my blood taken again today. This time I requested notice of my levels – trust my gut is right on! I also received my levels fro three weeks ago, before the weight gain. with some additional research I will know what the levels represent. I really do not want to take the meds.
I will followup on this blog. Your information has been very helpful. I know I want to take control. Thank you.
Kimberly,
I have been told that you can get Graves when your immune system is compromised – which is what must have happened with you with the severe pneumonia.
I agree with taking control, of course, but I had an incredible doctor that allowed me to trust my gut within reason and also treated me as an equal and not beneath him – so it was easy for me to follow his guidance.
Please do keep me in the loop!!
Jenny
Thanks for the infor. I have graves disease and they are starting me on methinmazole next week. I also did not want to do the RAI. Hoping to feel some relief from the meds. I am going to try 2.5 3 times a day. He did not put me on beta blockers and wondering if I should .
Thanks for sharing.
WOW – 3x a day – that’s a lot to remember – it was hard for me to remember twice a day. I hope you get relief and more importantly that you go into remission. Are you on birth control?
No I am going to be 50 this year. Did you take a beta blocker?
Hello all, I was diagnosed with Graves last week. My doc suggested RAI, which I was okay with, until another doctor friend of mine said “I always try anti-thyroid meds first and have never prescribed RAI as a first line of defense against Graves.” So I started methimazole yesterday, 10mg once a day and go back in 30 days to check my levels. I hear good and bad about this methimazole, has anyone had success with this? I’m glad I found this site!
Dianne
Dianne,
If you read my story then you know I was on Methimazole and yes, I had success in the sense that I was able to keep the disease under control with it. Thank goodness for your doctor friend. Did you stay with the doc that recommended the RAI or not?
Jenny
Hi
I was diagnosed with Graves 5 years ago and prescribed meth…which gave me hives and vomiting. I was then prescribed PTU at 3 X 3 per day in combination with beta blocker. I think my immune system had been compromised by excessive exercise which possibly triggered the Graves. I also had been through mega stress with my oldest child all through his teenage years and my doctors say the physical stress on my body through the exerxise ‘boot camps’ I was doing in combination with the mental strss was a likely cause. My first endo was sharpening the knife from my first visit. Told me that I needed either surgery or RAI or I’d die from a heart attack or psychosis. Apparently last century they now think half the people in asylums actually had untreated Graves Disease…nice. Didn’t go back to that Endo and started seeing a naturapath. tried everything from spiritual healers, holistic pulsing, machines, acupuncture and herbal supplements. Eventually got down to taking half a PTU once a day in combination with herbal ‘Thyrocalm’ sold in Australia. After four years started getting some anxiety and sought out another Endocronologists. What is it with these Endo’s?I think having the letters G O D in their job title has convinced them they really are one! This one was more arrogant than the first. Told me the only reason I was managing on such low dose PTU was that I was actually in remission. I stopped taking everything on his advice and was back in thyrotoxic storm in six months. I wasn’t in remission. Returning to him with dangerously high levels he now told me it was time for either surgery or RAI. Told me I couldn’t stay on PTU (although prescribed temporarily for me to stabilize) as it would damage my bone marrow and I could die withpout warning walking down the street. Told me there was no way of monitoring if your bone marrow was being affected. Contrary to what was said previously on this blog. What is the test that can monitor this anyone?? Anyway I feel the same way you did about protecting my thyroid fromdestruction, it just didn’t make sense to carry out a planned assassination on the thyroid that was already under attack by the other side. It’s like attacking your own team. Anyway now waiting to see Endo number three. Don’t expect to hear anything very different. I’m happy to stay on PTU forever but am worried about the possibility of bone marrow impact and also liver damage apparently effects of long term use. Also last two days have swollen feet and ankles. Has anyone else had this side effect from PTU. I’m a bit scared about this but also know that surgery and all the risks that entails likewise RAI can not be better options. Also being vain and not wanting to put on the predicted 10kg after surgery and RAI.Am investigating the websites and books recommended and hope to have better news soon.
Jo, I am sorry to hear all of this. By the looks of your email address, looks like you are in Australia. Good luck with your next endo – hope he’s a winner! I am so fortunate to have found McIver. Jenny
Hello
On Saturday I started Methimazole. The doctor wanted me to take 5mg three times a day. I decided that I wanted to just take 2.5 three times a day. Has anyone else tried doing the lower dose.
Brenda
My doctor put me on 10 mg methimazole just once a day.
I have noticed a HUGE improvement after taking it for 3 weeks. My heart rate was 60 last night laying in bed! I haven’t seen 60′s in over a year! I gained back all the weight I had lost, and my tremors have improved signicantly. No side effects what-so-ever with this drug, it’s doing exactly was I was praying for, I feel human again! I go in next week for my 4 week follow-up to test my levels again. I’m hoping I can stay on this course of treatment rather than the RAI.
Dianne
Hello, my hypers, have typed in a while. I’m doing fine. still taking my propronol, and methimazole. I think that i am the only one who thinks that i am in remission. I take my med every other day, or when i think about it. I feel great and some days i might feel antzy. I do to the endo on the the 28th of March. I let you know. My levels have be med high levels. My heart doesn’t speed up like it use too, My eyes look ok, to me. why can i just be hyper, perse. not graves disease. I had itchy ankles and smooth skin when i first started the med Brenda. It all went away, I am like – why can’t i stay on the med. But they said no more than 2years with methimzaole. Have to make a dicision. I am going to try it on my own. and stay away from stress and ex husband. haha
Lady,
I have read different stories on how long one should/could stay on methimazole for Grave’s. European doctors prescribe this med for long-term treatment of Grave’s, hardly ever reverting to RAI, only as a last resort and in extreme cases. Some people have been on methimazole for over 20 years, so don’t get discouraged. As long as you are taking a very low dose and your levels stay in the normal range, I think you’ll be okay. My doc said they will take me off the drug after 2 years to see if I can go into remission on my own. If so, great. If not, I’m going back on low dose methimazole unless my numbers spike again. U.S doctors are quick to cut to the chase and perform RAI as a first course of action against Grave’s. I’d rather not unless absolutely necessary!
Dianne
Hi Lady, What does it mean to be in remission? I have had Graves 10 yrs. now and my doc has never mentioned the word remission. But I cant get stable on meds. They do have an answer. They tell me I will be on meds the rest of my life. If you are in remission does that mean you stop meds?
oops… See above mistake…I mean the docs do NOT know why I can’t get stable on meds.
Hi Wanda – “Remission (medicine), the state of absence of disease activity in patients with a chronic illness, with the possibility of return of disease activity” – yes, you are off of meds for the rest of your life. But Wanda if you have had RAI – you no longer have Graves more than likely you are now hypothyroid because of Graves and RAI. So when they say you will be on medication for the rest of your life, it’s because you’ll be on a synthetic thyroid hormone for the rest of your life since they have basically killed your thyroid with RAI. Does that make sense? It’s sorta like women going through menopause and taking estrogen. Jenny
Wanda, I was mistaken. Dr. McIver said, “RAI doesn’t kill Graves. It just kills (mostly) the thyroid. The underlying disease can continue, so that eye problems, skin problems and bone problems can all show up later in life, even after the RAI has done it’s job……”
Dianne, I am with you. I have been trying to chill out. Not let things affect me. Ask me or tell them “do it yourself”. haha. I gained all my weight back. I miss the 176. 1 am now at 185. Use to weigh 195. I’m ok. When i feel like someone is starting to get on my nerve. I stop and take a deep breath. It seems to work. But i really don’t take the med. It been all most a year. and i am doing fine. I take 10 mg a day. and i now take them 2 or 3 a week.
March 28 will be my 2 visit since they diagnosed me with graves back in june.
Are they going to scan my thyroid/neck again. They aren’t going to stick those needle in my neck again?
So it sounds like every doctor has a different opinion about dosage and times a day to take it. Hopeing that I am not doing the wrong thing about taking half dose then recommended by my doctor. Thanks everyone for the info
Brenda go with your feelings too. I’ll let my hypers know how it goes on Monday. They probably want to kill my thyroid and take it out and give me more medicine for that. I going to pray about it. Lady from Philly
I’ve been taking 10mg of methimazole each day for the past 26 days, with absolutely no side effects….until yesterday. I noticed a quarter sized red splotch on my belly and an other on my back, and an other on my waistband. within 2 hours, all these red splotches grew together to form one giant red hot rash! I called my MD, who said “hmmm….I have no idea, I’ll look it up and call you back”. So in the time he looked it up, so did I, and it seems it’s a side-effect of the methimazole, which he confirmed when he finally called back.
He suggested benadryl, which worked well, but I noticed 2 hours later, after my chest and belly cleared up, I had a bright red, sunburnt rash on my arms and inner thighs. It was gone by time I woke up and it’s been about 9 hours or so and it hasn’t come back.
Has anyone else ever had a rash or hives from methimazole? i don’t want to stop taking it because it’s working so well for me! is it just a temporary side effect? I’m waiting for an endocrinologist to fit me in, my regular doc just sent in a referral, I’d much rather deal with an expert in thyroid disease than a general practioner. I want answers, not “hmmm….I have no idea!”.
I’ve been taking 10mg of methimazole each day for the past 26 days, with absolutely no side effects….until yesterday. I noticed a quarter sized red splotch on my belly and an other on my back, and an other on my waistband. within 2 hours, all these red splotches grew together to form one giant red hot rash! I called my MD, who said “hmmm….I have no idea, I’ll look it up and call you back”. So in the time he looked it up, so did I, and it seems it’s a side-effect of the methimazole, which he confirmed when he finally called back.
He suggested benadryl, which worked well, but I noticed 2 hours later, after my chest and belly cleared up, I had a bright red, sunburnt rash on my arms and inner thighs. It was gone by time I woke up and it’s been about 9 hours or so and it hasn’t come back.
Has anyone else ever had a rash or hives from methimazole? i don’t want to stop taking it because it’s working so well for me! is it just a temporary side effect? I’m waiting for an endocrinologist to fit me in, my regular doc just sent in a referral, I’d much rather deal with an expert in thyroid disease than a general practioner. I want answers, not “hmmm….I have no idea!”.
Hi Dianne,
Which benadryl did you take? The one for external (spread over the body) or the oral (pill or liquid)? If oral medicine, what mg?
I also have these giant red rash spots and they’re takin’ over my body day by day. Just started having these huge swollen rashes the other day and now, almost my whole body is covered! And the itch! Oh man, the itch is driving me INSANE. I can’t even sleep. I’ve been using tapdin 20mg for more than 2 months already but this is the only time I got this.
Maybe you can spare some help.
Hi Isabel, I took the benadryl pills, and it cleared it right up, it came and went for about 3 days but the rash has been completely gone for about 8 months. I also had the itching,but that went away after 2 or 3 months of being on the methimazole. I’m now taking a maintenance dose of 2.5 mg/day with absolutely no side effects at all. Hope this helps, feel better soon!
Hey Diane, I just started getting small, med, large, red spots, beautiful circular red spots from ankles to inter thighs, never pass by thighs. I don’t take any more med. I stop several months ago. so its not the med. They don’t itch, they are flat, just like my skin, they are not pumps, I wake up they are there, before the day is over, they go back inside my skin. couple more days they are there again. Second time some itched, and i felt a lump, then they are gone again. I drink Wine, but i started drinking volka, rum, I throught it was that. I brought new lotion and i stop that, then i throught it was the new body wash.. Every time i make an appoint for the dermotology, they are gone. I Dr said it got some to do with the Auto immune. One day, i pulled my pants down and i throught i was at the circus and someone put spot all over my lower body with red paint. wow. lol.
No, I had rashes, something like hives, skin got real smooth as if i loss all hair pores, red skin. I got those systoms with 1 week of taking meth. I love my little pill now; when i do take it. Ok,my hyper friends. I’m leaving now for my 2 endo appt. the first they scanned, then they did a biospy – that was 6 months ago. Now I know i have not been taking my pills on a regular basics. I felt i was going into remission. I feel great. Talk later. I am not letting them take my thyroid out, nor am i goint to let them kill my thryoid. I’m keeping my thryoid along with my meth.
hello, i am back from my 1 revisit since May of last year. Nodule is the same, Everything scanned great. I told him that i dont take the methimazole like i should. I told him that i take them 3xs a week. He repeated it with a little irritation. So i told him 1 a day, then i told him that i don’t take it. He relized that i was lying about taking them. He went on to stress that the methimazole is for my bones. So they wont fracture easily. I told him that i feel great and i think that i am in remission. He said you will have to take these pills for ever. I told him i don’t have graves. He said, you can be right, but with your numbers TSH, U have hyper, and you need to take your md. Then he went on to say, that i could be right – that some people just released to much thyroid at that time. He wants me to take another blood count. I feel good. though. Got to make an appt. let you know
Hi Jo I read your Graves story and wanted to conect with you. I have had Graves for 10yrs. now… I did the radioactive iodine as suggested and was told I would be stable on a med in one yr. Well…. its ten 10 YRS. later and I have never stabilized. What is this crazy thing in remission peopleare talking about….God find another DR !!! there is NOTHING called remission… this is life long… I would like someone to explain what a thyroid storm is ? I am at my witts end and feel worse then ever. No one can tell me I do not stabilize on meds. I have been told I may not have been fiven the correct amt of radioactive iodine. To check this I have to go off my med completely to measure the amt that obviously is still being made. If I go off meds completely I can’t move…. I will crash !!!! Someone help with info…Recently I am having horrible muscle weakness, heart palpatations like horrible anxiety can’t sleep as usual. I am drained energy. Absoluteley no energy.
Hi Wanda
Wow I feel for you. This is exactly what I fear, I really don’t think the medical establishment really know what they are doing. In a hundred years people will be saying ‘THEY DID WHAT!!’ Sounds like you are back in storm mode. Maybe you need to increase your dose for a while. What are you on? Doesn’t sound like you want to go back for more radioactive iodine. I know somebody who had a partial thyroidectomy (most of thyroid cut out) then RAI, then more RAI again before she was ‘cured’. Of course she just swapped one disease for another and is now hypothyroid and on thyroxine.
I think the stress in my life is keeping me sick so I’m working on that …
By the way everyone I’ve virtually never taken any birth control pill but I still got Graves…
Good luck Wanda!
Jo
Hi Jo, Today is May 11th. Sorry I just found your post. Life has not been the same since diagnosed with graves. I dont know if I would do RAI again. I was only given two choices RAI and surgery. I lost my health insurance last year to make matters worse. I take Levoxolthorine. These docs do not understand the horror graves causes a person. Waiting month after month to get the correct levels then trying to maintain them. Its insane living like this. It wears on me mentally emotionally and physically. It makes me insane sometimes. They just do not get it. Not like I can sit around and not work. I am at my wits end. Physically exhausted with no hope of a change. I do not understand why they do not know why I can’t get stable. I am tired of the whole thing. No one has an answer. No health insurance now makes it really hopeless.
Wanda,I am in the same boat as you. I was diagnosed with Graves in Dec. 2005, the doctor gave me all the choices and I was so scared I asked,”What do you suggest?” He told me the best result was the radioactive iodine so that it would be easier to regulate the medication. It took me 4 years to get stable (without his help), he put me on synthroid which I was allergic to, so I went to my NP and she put me on levoxil 100mcg. Well of course when I went back this summer my levels were off again, she switched me to 112mcg and am going back this week. Thing is I have went Hypo!! I have gained about 30 lbs in a year, which isn’t alot to most people, but it has made me feel bad (backaches, leg cramps and ankle problems). I wish I would have researched and took my time to discover more about the disease.
Unfortunately, I am also in a position such as yourself, no insurance. I have been working a temporary job for a big corporation that is not currently hiring but can get more temporaries (how funny is that?) My meds are under a prescription discount program ($18.00 month) but when you have to have labs and doctors (mine is 80.00 for doctor and 20.00 for labs (discounts for cash patience)) visits; it cuts into a tight budget! You might want to check around to see who gives discounts…. But the main thing is to watch those stress levels; I know when I’m stressed it makes my symptoms unbareable!!!
Good Luck and wish you well.
Dawn
I would love some research information from you im in my 3rd year of graves and any information would be great especially any food or books you feel were beneficial many thanks for your blog ann
Hi jo, I have not been on this site for months I think. I have learned that stress plays huge part in my life. I have also had imsomnia for years. Linked to stress and graves I am sure. Finally had to give in and talk to my doc. It has taken several months but finally getting sleep. My life has changed drastically. I am trying to accept and adjust but easier said then done.
Stay in touch jo. Thx for your response.
Hi, I found your site while browsing the web for Graves’ Disease.
I don’t think RAI is that dangerous. The reason the doctors want you to stay away from children and the elderly is because the radioactive iodine can affect other people’s thyroids, which means you can actually damage their thyroid by being to close to them. Really it’s just a precaution, and the most dangerous way for someone else to be exposed to your radioactive iodine is from urine on a toilet seat. You have to understand how the thyroid works. When your body intakes iodine it goes through the thyroid gland. This is the same reason why people that are exposed to radiation at a nuclear disaster are given potassium iodide pills. The potassium iodide pill fills up your thyroid so it won’t intake as much of the radioactive isotopes from the atmosphere.
My grandmother is almost 90 years old and she had the RAI treatment over 40 years ago. She became hypothyroid after the treatment (which is usually what occurs) and she takes one pill everyday. Her weight is normal and she lives life normally, actually better than most people her age. I had the RAI treatment 5 years ago and after one year I was feeling great and 3 years later I had lost the 35 lbs that I gained while on methimazole and propranolol and anti-depressants. The only problem I am having now is that my thyroid has become slightly overactive again, so my doctor is reducing my Synthroid dose.
H!!! I’m so glad I came across your blog…a lot of my questions have been answered.
I was diagnosed with Grave’s about a month ago. Prior to the diagnose, my appetite for ANY type of food doubled but I didn’t gain any weight. In fact, I was losing weight! I was losing more hair, my back ached, and my heart was racing more often (which I thought was due to my consumption of 2 cups coffee a day.) I was worried so I’d asked my MD for labwork to be done. I was in range for everything else but my TSH read 0.05.
My endo has horrible bedside manners but I’m told that she’s good at what she does so I’m sticking with her until I can’t tolerate her anymore.
Someone recommend David Brownstein’s “Overcoming Thyroid Disorders”. Have you read this book? Is it worth buying?
Congratulations on your remission!!!
Hi ivy,
No, I haven’t read David Brownstein’s “Overcoming Thyroid Disorders”.
I got the most information from a Yahoo! Group dedicated to graves disease and from my doctors and the Internet – I am not a good book reader.
Keep me updated on your progress!
Jenny
Hi Jenny,
So after one month of taking 10 mg of methimazole, my t4 level went up from 2.27 to 3.06 ng/dL, tsh is at 0.01. My endo said I’m not responding to the medication and suggested RAI or surgery. She told me she was very disappointed because all her patients responded well to the treatment she gave them and I’m her “bad case”.
I told her I wanted to give my thyroid a chance and asked her if I can continue the medication for another month. She wanted to increase my methimazole to 15 mg but was afraid for my liver, so she left it at 10mg. I get to see her in another month. I’m afraid she’ll push RAI on me.
Hi Ivy,
I am surprised that she was so quick to call you a bad case. I wonder why she didn’t think of increasing the dosage to see if that was the problem. For example, I was started on a dose of 20 mg and then when it was stable, I was reduced to 10mg and eventually 5mg. I do not remember the time periods in which that happened, but I do know I started with a huge dose. So see if you can recommend that.
What’s your gut telling you? Usually RAI is not pushed until 2 years into it – so I wonder if she increases the dose if that’ll help.
Of course, visiting McIver at Mayo is always an option too!
Thanks for the update – fingers crossed!
Jenny
Hi Ivy,
Read your post about RAI. I did RAI 10 years ago and they told me it would take a year to stabilize me on med. 10 yrs later and I have NEVER been stabile. They dont know why. They wonder if I was given the correct amount of RAI. My life has been awful since the RAI. If I had it to do over again I would try the meds and or do the surgery. I am tested ev 2 months as ev 3 is to long for me. Good luck.
wanda
Wanda,
While I hate to hear that – I do appreciate you taking the time to offer your 2 cents. I hope they find the right dosage for you soon!
Jenny
Hi Wanda,
That’s what I’m afraid of too! Thanks for your input on RAI. I hope you feel better soon.
Hi Jenny,
My gut is telling me to wait and not jump into anything. I want to give my thyroid a chance. I don’t want to be on meds for the rest of my life. Even with the common cold or flu, I’d wait it out. My husband and cousin suggested I get a 2nd opinion. My sister, on the other hand, suggested I do the RAI because she knows I want to have kids soon. Her friend went through a thyroid storm a few years ago and opted for RAI. She’s fine now and has not had any major side effects.
Do you know anyone who’s not responded to the medication after a month? If so, please tell me what they did.
Thanks!
Ivy
Ivy –
You can have kids and be on ATDs (antithyroid drugs) – McIver uses PTU for prego women. When he told me that, I told him that I wanted to be on it. That’s why I switched to PTU. I am surprised that your Endo hasn’t increased the dose to see if that’ll work. I ABSOLUTELY think you should get a second opinion. This is an organ in your body and it will effect the rest of your life depending on the decision you make – it’s best to make an informed decision.
If you can afford the trip to Mayo, I promise you will love McIver…a god among mere mortals.
Jenny
Hi Jenny,
My endo has told me about PTU but didn’t want me on it because it can cause severe liver damage and death (per FDA). So she’d rather me be on methimazole until I’m “stable”. How easy was it for you to conceive while on PTU?
She felt uncomfortable about increasing the dosage because of my “size”. Does size matter on dosage?
Ivy – I was not trying to have a baby. I just inquired about pregnancy and Graves is why McIver told me about PTU. He said that’s what he put prego Graves disease patients on and I said, “Well, if it’s safe enough for babies, stick me on it!”
PTU tastes HORRIBLE – for like 20 minutes after you take the pill. It’s weird.
ALL ATDs have the risk of liver and kidney problems – that’s why every Endo should test those levels.
I don’t know what you mean by your “size” – are you overweight or underweight? I am a fatso, so McIver had no problem with that – actually it really has nothing to do with your weight – I mean, McIver never mentioned anything about my weight because of ATDs. It was more like, it’s not healthy to have that extra weight…but never in association with ATDs. Weird.
Second opinion time!
Jenny,
Oopps! I’m sorry I guess I misread your response about getting pregnant.
I’m 4’11″ and 120 lbs. I consider myself a fattie. I got another endo’s name and number! Let’s hope he or she can help me.
Thanks!
Ivy
Ivy – ok, I thought maybe it was because you were under weight. I am 5’9″ and 200+ lbs. Not fun. Working on getting rid of it…but I am pumped you got a number for another endo. Let us know how it goes. Jenny
Ivy – I forwarded your comment to McIver – he wrote, “So, PTU does have the potential for liver problems, perhaps more so than Methimazole …… but we still use both, and do so safely. However, it requires that a Physician be comfortable with the monitoring and dosing requirements……. Physician comfort and experience is really important in this game too!!”
Just got back from my second opinion endocrinologist!!! I feel so much better. She seemed to WANT to give more information about and not push RAI. She increased my dosage from 10 to 15 mg. My blood was drawn to check my liver. She also said I don’t have to take Propanolol if I haven’t had any palpitations. She also suggested I do a Thyroid Scan and Uptake test. I’ve got that scheduled two weeks from now. Hopefully I won’t have to take ATDs anymore.
Ivy,
I was diagnosed with Grave’s in February 2011 and started 10mg of methimazole once a day. After 30 days, my T3 and T4 are now “normal” but my TSH is still 0.010, so my doctor increased the methimazole to 10mg. TWICE a day and I go back next week to re-check my levels. My doctor knows I am not going the RAI route unless the meds fail to stabilize my levels after being on the Methimazole for at least a year. I feel like a new person, methimazole is really working for me, however, I did develop a rash 5 weeks into it, but it only lasted 2 days and I haven’t had a problem since. My goal is remission with methimazole since I am a good candidate (mild grave’s, no opthamology issues, no enlargement in my thyroid).
I have to wait another 2 months before I can get into the local endo’s office so I’m working off the advice of my general practioner, who intially opted for RAI, but is completely on board with the methimazole route, adjusting accordingly and as needed, which is what your doctor should be doing.
Good luck,
Dianne
Dianne,
Thanks for responding to Ivy’s inquiry.
I did like your comment, “my goal is remission” – I believe so strongly in the power of the human mind. My goal as well as my gut feeling of remission were the two things that kept me going for 8 years and it was achieved.
Good Luck!!
Thanks,
Jenny
Diane,
That’s great news! I’m hoping in another month my levels return to “normal” as well. I’ve changed my diet (somewhat) to lessen my sodium intake. I’m hooked on fries! I wonder if that had anything to do with the increase in my T4 level.
I TOTALLY agree with you on being on any ATD for at least a year to see how my body responds and then think about RAI or surgery. My endo knows I don’t want to take the RAI or surgery route but I’m guessing she feels uncomfortable with me being on ATDs for that long.
My doctor has given me another doctor to go to. Hopefully he won’t be pushing RAI…
_Ivy
Ivy,
I am glad she is OK with the ATDs and increased the dosage.
I am not excited to hear about the Thyroid scan – that’s when they give you a small dose of RAI, so that your thyroid “glows” under the scan!
McIver thinks that’s totally unnecessary – and again, if you want to avoid radioactive iodine, then even a small amount isn’t worth it!
Jenny
Hi Jenny_
Oh no! Really? I thought it was a good thing.
This was suggested after I told her that I didn’t want to be taking ATDs or do RAI. I was told since it’s such a small dosage, it would pass my system right?
I have no idea what the effects are. I just know it’s not necessary, they can do an ultrasound which is much less invasive.
The doctor I went to at KU Med tried to pull a thyroid scan on me -that’s how I found out what it was all about.
I think ATDs are the safest thing if they work.
If you’re on birth control, I’d try getting off of it to see if that makes a difference, too.
Jenny
Jenny,
The other endocrinologist performed an ultrasound during my first visit with her and found nothing….I’ll do more research before the test.
I’ve been off BCPs for over 3 years now. Hopefully this increase in dosage will do me some good.
-Ivy
Hello, Its me. Lady. I went for my second endo. I spoke with the dr. He asked me question about my medication. After he questioned me, he finally realized that i wasn’t taking them. I told him that i take them ever other day, or sometime 2 xs a week. 1 20 mg of propronol, and 10 mg meth a day. He didn’t like what i was saying. He said that i was playing with my bones mass. He told me that he wanted a more up to date blood work. My BLOOD WORK CAME AS Definitely better. TSH is still low, but thyroid level is ok. sHE going to forward it to the endo. I told him that i think that i am in remission. they really don’t know about this disease. Stay tune with your own body language and stay away from stress, and ask for help.
Hello Ladies
I was diagnoised in Jan 2011 with graves disease. For the first month I was on 2.5 methimazole I was feeling better but my TSH was still 0.03 very low. So now I am on 5mg 3 times a day. I was feeling better with the 2.5 now that I am taking 5mg I am tired and no energy, and emotional which I am having emotional issues too but feel that it is making it worse. I have been on the 5mg since April 13 and not doctor wants me to wait 6 weeks to see what my levels are. Any feed back would be great.
Brenda – what is the plan after the 6 weeks? When you are on a low dose that’s good. And furthermore if you are tired on a low dose, then that might mean you are hypothyroid – which is weird on a low dose, especially after you were on 2.5. i wonder if you are in remission and need to be taken off of the medication altogether, but your doc might be weaning you off of it, much like mciver did with me.
in other words, tired and no energy = hypothyroid, crazy energy and restlessness = hyperthyroid/graves. Does that make sense?
Well I think I confused you . Sorry I have only been on meds since jan. I am feeling tired and antsy all at the same time. I definatley was diagnoised with graves. Any emotional feelings for you when it meds increased? Were you on the same meds. I was feeling good on the lower dose but my Tsh results were still very low. .Thamls
Brenda – this is my website and therefore the story above all the comments is my story, so if you have read it then you know that, yes, my meds with increased/decreased a lot. I was on methimazole/tapazole for 7 years and in my last year was on PTU.
Every time i was tired, I decreased my dosage (much to my doc’s dismay – so don’t try that at home, folks!)
It’s almost been 2 years since I had Graves, so I don’t remember a lot of the details, that’s why I wrote my story, so that would be included.
i’m not very hip on blood work stuff – i never did figure it out. you might try joining the yahoo group graves disease list- there are a lot of people that can respond there as well – here’s a link – http://health.groups.yahoo.com/group/graves_support/
Thanks Jenny you are so Helpful!!!!
Hello, May 12 2010 was the date that i was diagnosed with graves. I have learnt from reading and my body languare that you are what you eat. I changed my diet a little. Started taking herbs. Fish oil, Calicum, D. Multi Vit and about 2 more that i should take. Stay away from Stress, and complication. Dance and live and have fun. I finally figured it out that the DR. really don’t know to much about graves. I started playing around with my medicine, and i found what work for. take one pill, leave one pill. skip a day, dont skip a day. It works for me
Hi All,
I’m going in for my 3rd blood test tomorrow. My endo says it doesn’t matter but does anyone know if fasting will provide better results?
Thanks!
Ivy
Hey Ivy, Its really about how do you feel? Do you feel tired, confused, depressed, muscle hurting. Out of sync with your own body. Do you feel like yourself beforeg grave. I want the true results from my blood work. So i will no how to deal with my issues
Can someone PLEASE let me know if it’s normal for my blood tests to flutuate so extremely between my monthly visits while on methimazole trying to control my grave’s disease? I started out with my TSH at 0.001…sorry, I don’t have the T3 and T4 #’s with me. Dr. started me out with 10 mg methimazole and next test was a tiny bit better, but she increased my dosage the next month to 20Mg and at the next test my numbers were TSH 0.020, t3 uptake was 29.8 (normal), Free Thyroxine was 1.4 (normal) and thyroxine was 4.7 (normal). She still felt my thyroid was working too hard so she put me on 30 mg. Well, at my next blood test, the tests came back as follows: TSH 54.22!!! Thyroxine .4, Free thyroxine .1, and T3 uptake is 21.6, all low, indicating hypothyroid! Should I be freaked out by these numbers, cuz I am!! especially the way that TSH jumped so high in just one month! Is that normal? She called and left a message on my phone to decrease methimazole back down to 20 mg a day, with no urgency in her voice, and I have a follow-up appt. with a new endo on 6/27. Can this wait til then? I feel more tired than usual, definitely have headaches and my period was alot heavier and longer than usual this month. Please can someone explain this before I work myself up?? thanks, hugs, Dianne
Hey There guys.
Well struggling with graves diesease. April Tsh was .3 May 3.7 June 30.7. Taking methimzhole 5 mg three times day. Today my doctor called and said that now my thyroid is barley producing. The methimazole is to reduce hormone for my graves disease. Today he called a prescription from l-thyroxine ( synthorid) for hypothyroid. He still wants me to take methimazole for my hyper and also start taking L thytoxine for my now hypo (lab 30.7) hypo thyroid. So when all is said and done I am taking methimazole 5mg 3 times a day to lower hormone from my thryoid and L thyroine 150 my once a day to up my thyroid hormone.. It just doesn’t make sense any body out there have the same simularities? thanks
Hi Brenda,
I’d get a second opinion. I’m not sure why you’re endocrinologist is prescribing you two types of medication.
I felt my first endocrinologist was not the right fit for me so I started asking around and called for a second opinion.
Good luck!!!
Hi Brenda,
I agree with Ivy. Time to switch docs! Never have I heard of someone being on two battling medications. Moreover, I am surprised that the pharmacist was cool with it! How strange.
Now, there’s a chance that I could be totally wrong, I am not a doctor, but common sense tells me it’s wrong!
Jenny
Brenda, I was just reading about this type of “blocking therapy” using methimazole to lower your thyroid function, then using synthroid to bring it back up. I have a similar situation happening now, although my doctor has not prescribed synthroid, she just lowered my methimazole. I went from 0.002 TSH to 54.22 in one month! And I feel like crap, but instead of “blocking” it with synthroid to get me out of hypo, she reduced the methimazole. So, try to google “thyroid blocking therapy” to get a better understanding of what your doctor is trying to achieve. I just don’t know enough about it to explain it as well.
FEel better soon!
Dianne
Dianne – that’s interesting. Every time I went hypo, I just lowered my methimazole – which always upset my doc – but sometimes it was 6 months between appointments and I refused to feel like crap. Ironically, I always chose the right dose as my blood work was always right. My last doc, McIver, didn’t like my approach to regulate my own medication and said that when I started feeling hypo to call him and he’d have a blood test done and we would lower it that way without having an appointment. So maybe that’s an option.
Jenny
Thanks guys. The problem is I live in a small town.and.there is no endos.so working with a internest. I think I will consult with my family doc on monday. I took the new med this morning. I am wonder if the new meds is supose to quickley bring up the hormone. I am.confused have any one you been on either of thses meds. The pharmacist was also.confused at the doctors request. Thanks again for all the replies
Brenda, I have only taken the methimazole and I peaked out at 30 mg a day for less than one month before I went waaaaay hypo! Which, I guess is a good thing in that my thyroid is still working?? (anyone?)
I am also confused by all of this too, on one hand, my regular MD is treating the TSH and NOT my symptoms, but my symptoms seem to be lagging behind the lab numbers. so I don’t know if a true picture of my thyroid function with the lab work is happening today, in real time, or are the lab results lagging behind by a few weeks? I just want to feel normal again!
Good am to all, I hate to be negative but I have had Graves over 10yrs. now and have finally come to the realization I will never feel normal again. This darn thyroid regulates the whole darn body. Even when my numbers are good I still do not feel normal anymore. My whole feeling of wellness has gone. Hope has just been a disappointment of days gone by of flat misery. I hope no one else has had this experience.
Dianne, I read about your numbers changing all the time !!! I have had Graves over 10 yrs now. I was told 1 yr to regulate meds and I would be stable…. Well… for 10 yrs my numbers would change drastically month to month and med changes would follow ev. time I tested. Leaving me to feel like crap while the meds supposedly adjusted my numbers… Well they adjusted to just another unacceptable level to be followed only by another adjustment. This went on year after year with no explanation why. This year I have finally had the same med dosage for 6months now !!!!!! SHOCK !!!
No doc can explain why except maybe I was not given the correct dosage of RAI when I was first diagnosed. I don’t know…Who does?
Greetings fellow Graves Disease Friends! I go GD after stopping birth control pills. There is absolutely no doubt in my mind that one is related to the other but the docs I have discussed this with give me a blank stare! Anyway, my Endo insisted that I do the RAI because he said that one of Methimazoles worst side effects is that it can make your white count take a drastic nose dive with no warning. You could have bloodwork done one day and it be totally normal and the next day have it fall to dangerous levels. He said if this happened you could end up dying from something as simple as strep throat! I had resisted the RAI for a long time because I was sure I would go into remission. My Endo said 30% of the people with Graves go into remission but half of those eventually end up going out of remission. So only 15% of people with Graves go into remission. The methimazole risk was too big for me so I did the RAI. Yes, staying away from everyone was weird but it’s not really that big of a deal. I feel great and wish now that I would have done it a long it long ago!
Gina,
thanks for sharing, it’s so comforting to hear from someone who has had a good experience with RAI. I am on 7.5mg of methimazole for maintenance, but am prepared to do the RAI if the drug therapy doesn’t put me into remission on it’s own. I hear alot of horror stories, of course, so it’s nice to hear that it worked for you and it doesn’t seem so scary now if I do have to do it. I’ve heard alot of people say it’s not a big deal and they’re glad they had it done, no more worries about fluctuating between hyper and hypo and the only inconvenience is remembering to take their pill every day.
There’s hope for us after all!
Hello
Since last Saturday thy are now having me take 2.5x 3 times a day of methimazole and 150csm synthoid once a day. I feel real nausea, shortness of breath. Also, a bad taste in my mouth and toungue. I think that is from the methimazole. Has anyone else had these side effects?
Thanks
Brenda
I didn’t experience the bad taste in my mouth with Methimazole, but definitely did with PTU (similar to Methimazole). Is it sorta metalic? McIver always recommended that I eat something when I took my medication to avoid the taste.
I am SOOO confused why they have you on an anti-thyroid drug and on a synthetic thyroid hormone. It’s like giving you the negative and positive at the same time.
You have too much positive (GD = too much thyroid production), so they should ONLY be giving you the negative (Methimazole or any ATD – Anti-thryoid drug) to balance it out. Figuring out the amount of the negative needed to balance the positive is always difficult, but should get to the point of controlled and that’s why they take your blood so many times before the dosage is regulated.
Jenny
I checked on the methimazole/synthyroid combo. It’s called “block and replace”. Sometimes helps to make thyroid hormone levels a bit more stable….. not usually necessary and no great advantage unless levels are hard to control
Directions for the synthroid is to take first thing in the morning with a large glass of water on a empty stomach. I can not eat anything only water. So I usually have my coffee right after a hour passes and eat 2 hours later. My interest and my family doctor had agreed on doing this treatment. It sure reeks havic on your system. My worst problems is the feeling I can’t breathe. Yes it is almost like a metalic taste and it stays all day. It is from the Methimazole as it started with in a few days of taking it. They won’t take my blood for 6 weeks now. I am just trying to figure out at this point if I am being over or under treated.
Thanks guys’
How come you’re not seeing an endocrinologist?
Hello, haven’t typed for a while. I’m doing fine, I feel great most of the time. Get a little headache, and a little dirarere every now and then. I had blood work done and 2nd endo appoint. I have been ajusting my own med according to my feeling. Take one day, don’t take one day. My endo got mad too. But i had to regulate myself, because they don’t know how i feel. Anyway, i told myself that i was in mission. and i weaned myself off and i stay away from stress as much as possible. I pray alot. I haven’t taken my med in almost 3 months. I feel great. In charge. I not suggesting that you stop. But listen to your body and moods. I went hyper, hypo. i cut pill in half, or i took whole pill. It all depend on how i felt. Now i don’t take no pills. I check my hands for tremors, i listen to my heart from within me. it works for me. Find your balance
I was diagnosed in 2002. Started out on 15mg methamizole 3x/day. Docs pushed RAI, but it wasn’t an option as a single parent. Over the yrs RAI was pushed hard but I always refused. Found a great nurse practitioner who said if the drug is working for me with no side effects he sees no reason to change treatment especially with the bad side effects that can occur with the eyes. As time went on, I needed less and less of the drug. For the last yr I was only on 2.5mg once a day and started noticing I was freezing all the time and my nails were very brittle. I stopped taking the pill altogether, waited 6 weeks, saw my Endo NP last week. He says bloodwork looks good and I could be on remission. After all this time?! I asked incredulously, and he said yes. I go back in 3 months to do bloodwork again. So glad I didn’t kill my thyroid like so many docs wanted me to.
GOOD ON YOU! I’m not that surprised about your remission because Elaine Moore that wrote the Graves Disease book told me that for some reason people go into remission after 8 years of being on ATDs (anti-thryoid drugs).
When I said bad eye side effects I was talking about the RAI not the meds. My NP said that it can really effect the eyes. What basically got me was all the no hugging, bleach in toilets, paper plate stuff. Then when I read up on it it wasn’t an easy process afterwards dealing with a thyroid that was continually changing on its way to probable death. My dose adjustments were managed by myself sometimes as I could feel the shift in my body. The fuzzy head was always an early symptom for me something was off if I needed more medication. Methamizole caused no problems for me the whole time I took it and really the only inconvenience I’ve had to live with from hyperthyroidism is remembering to take the pills.
That’s great! I have a goiter still and my thyroid is lumpy according to an ultrasound. I’m also very fat and have found it hard to lose weight. But have started seeing small changes towards the positive in the weight department. I’ll be in remission two years in Nov.
It’s funny you said that about regulating yourself. I totally did the same thing! Docs always got mad at me but then when they’d check my blood I was right!
hi! i was diagnosed with a hyperthyroid 4years ago, im taking tapdin 5mg once aday. I check my hands for tremors, i feel ok, and before i got married i stopped taking my medications for 6 months since i think im well already. only to find out my hyperthyroid shoot up, now its been a year since i started taking 5mg per day, and now everything is ok with me my hyperthyroid gets stable already but my problem right now is we’ve been married for 2years but i dont get pregnat.. my doctor says ill just go on taking my tapdin(methimazole) since its safer. can you help me with this?
Good Morning,
I have had or should I say been told I have Graves disease about 5 years ago. I had a lot of the side effects. Every Endo I have gone to has pussed RAI.. I have always said no. I have gone into remission twice. The first time for six months. The second time for 2 years. I now have it again. Taking PTU and betta blocker. Hoping to go into remission again. I believe my horrible vice to smoking is what brings it on. When I am upset I smoke more and eat poorly. I am sick and tired of the ups and downs of this disease. I was considering rai or surgery. I am so confused and don’t know what to do. My pulse is so high it is scary. I have three children to bring up and would like to be there to watch them become adults. However, I know for a fact stress is what brings it on. Any ideas I am open. Should I go to a holistic dr. or what?
Help
Jennifer
Jennifer,
I know you probably already know this, but you should make every effort to stop smoking, as it absolutely triggers an auto-immune response and will aggravate your graves disease. I understand your frustration, I was diagnosed in February 2011 and was put on methimazole and within 3 months went hypo, so bad I could not even get out of bed. Now I am on a maintenance dose of 7.5 mg daily and feel GREAT for the first time in months, so don’t give up, but do your part! Quit smoking, eat healthy and avoid stress, only YOU can make those changes, no doctor or pill will ever take the place of healthy living habits.
Feel better soon!
Dianne
Jennifer,
I totally agree with Dianne. I can’t imagine life with 3 kids without any sort of stress but do what makes you happy and stress-free…maybe join a yoga or dance class?
Dianne,
What does “maintenance dose” mean? I was diagnosed in March and went hypo last month. Sadly, I’ve been gaining weight, losing hair, and my entire body is always in pain. Massages and going to the chiropractor is only temporary. Any suggestions?
Ivy
Jennifer, U R absolutely right – Streess. Stay away from it. Get other people involved with helping you. Say NO more often. If you can’t, get someone else to do it. someone who needs a little stress in there life. I just weaned myself off the med. I know i went into remission. I don’t know for how long, but i try to stay away from stress. I’m learning to say NO to the smallest things. If i don’t want to do, I say NO. where as i use to say Yes. I run from confusion, arguments, debates,. I just try to stay around funny stuff. it works. I haven’t taken my med for almost 3 months. I don’t want RAI, I dont’ want pills.
Lady,
How do you know that you’re in remission? How does it feel?
Hello- I’m reading as much as I can on Graves Disease. I was diagnosed in May and my local Dr sent me to Mayo. I refuse to have RAI. My husbands aunt had to do it 3 times before it killed her thyroid, and now 10 months later, she still feels horrible. She ended up quitting her job because she has no energy and can’t function. I do not want to end up like her. The Dr at Mayo started me on 40 MG Methimazole. I took it for 17 days and developed dark urine and horrible itching. My local dr did a liver test and told me to quit the pills. She said my liver enzymes were quite high, but they weren’t terrible. I called Mayo, and the Dr said I should come up there and he would do a liver toxicity test and they could do RAI the next day. I asked about trying a lower dose, and he said, no, people that start with liver problems can’t be on the pills. He made me mad, so I will be going somewhere else. How does he know that I wouldn’t be able to tolerate a lower dose? I don’t consider my Graves to be severe. My uptake take was only 39%. My antibodies are in the moderate range. I have no eye disease and no goiter. The only symptoms I have is high heart rate (110 average), my blood pressure is higher than normal, and I am having muscle weakness. I’m glad there are places and people to share our problems with. I learn a lot from reading all this. I’m hoping my new doctor with let me try a low dose of ATD. I feel I can get this in remission with ATD and the proper supplements. I just wish I lived in another state besides Iowa. We don’t have many Dr’s here who treat this and our insurance will only cover in this state.
Corrine, U R absolutely right. Lower your dosage. Get the pills and you cut them in half and you try this and that, and get your blood work done faithfully, Keep a record and you determine if it getting better. Keep record and check them and learn about this Graves. I have learn so much – It come from stress, and not saying NO more often.
I don’t have stress. I truely believe my Graves came from smoking and Aspertame. I smoked for 15 years, but I quit in December of last year. I also drank about 10 cans of Diet Pepsi a day and I quit that in January because I wanted to get healthy. I had a thyroid test done in December because I have uterine fibroids and I had a terrible bleeding episode. My doctor said my thyroid test was fine then and I also felt fine. It wasn’t until a few months after I quit the smoking and the aspertame that I came down with Graves. Go figure- try to get healthy and then get sick after you quit all your bad habits. Anyway, I am so worried that since I had that episode with my liver and dark urine, that this new doctor won’t let me try the lower dose. I’m just thinking if the Dr at Mayo wouldn’t let me try, whats to say this Dr will be any different? I’m so scared-I do not want RAI! I have read very few stories where people were glad they did it.
Corrine,
Can you try PTU instead of methimazole? Some people who cannot tolerate methimazole try the PTU, and vice-versa. I also developed hives and itching 4 weeks into taking 20mg of methimazole a day, but it went away within a week until my body adjusted.
Also, in the meantime, has your doctor put you on a beta blocker for your fast heartrate and high blood pressure? That should help you start feeling better faster. My resting heartrate was around 100bmp and my bp was at times 160/95 or higher until I started the beta blocker, now my heart rate is always between 60-70 bpm and my bp is about 110/70! And, if you can find a lemon balm plant somewhere (I found one in the garden center at Walmart and planted it in a shady spot in my garden), you can pull off 3 or 4 leaves at a time and eat them, it is one of the best known natural anti-thyroid remedies you can find. IT has a nice minty-lemony flavor! Two weeks after eating these leaves every day, I went completely HYPO, my TSH went from 0.012 to 54.12!! Now it could be a coincidence that my thyroid finally leveled off after being on the methimazole for 3 months, but I can’t help but think the lemon balm had something to do with it because that was the only thing I changed. Anway, now I am on 7.5 mg of methimazole now as a maintenance dose and feel the best I’ve felt in a long time! So don’t give up, grave’s is treatable but you have to do you part and make smart choices about what you’re eating and drinking. Expect a roller-coaster ride until you level off. Avoid caffeine, alcohol, and salt. I can’t stress that enough. Iodized salt is your enemy when you have grave’s, so no more salty snacks, chips, highly processed boxed foods or table salt. You should notice an improvement within a few days. Ask your doctor about PTU if you can’t take methimazole and get started on the beta blocker, it really does help. Hang in there, it gets better!
Dianne
Also, Corrine,
I know you are trying to gather as much information as you can about RAI, but you probably won’t find alot of people writing good experiences about it because once they’re feeling better after having done it, there’s no reason to get back on the computer and write about it, you really only hear the horror stories. Remember that everyone is different and that you would probably have a good experience with it if you have a good doctor with alot of experience. I don’t want to do RAI either, but I will as a last resort If I do not go into remission while taking methimazole. There’s really no other choices for us out there, other than surgery to remove your thyroid if you’re really opposed to the idea of RAI. Same result though, you’ll have to take thyroid meds for the rest of your life.
I am on beta blockers. My resting rate is anywhere from 110-120. Once in awhile it might get down to 105. I really don’t think they help much though. Those are my numbers after I have taken the beta blocker. Maybe I will try the lemon balm. I just started taking Magnesium because I read that helps slow the heart rate. The Dr at Mayo said he would ot even consider trying PTU. I don’t understand why he wouldn’t let me try a smaller dose of Methimazole. Ya, maybe my body can’t handle it, but the only way to know if it’s a bad reaction or just too high of a dose is to try it again in a smaller dose. My liver was fine when I started, and I’m thinking its probably fine now too. I haven’t been in for a test because I figured when I go to my new Dr in Des Moines that they will run all the tests again anyway. I’m sure there are success stories with RAI, but after seeing what my husbands aunt went thru, I don’t even want to consider it. She told me she is so tired that she gets up in the morning and all she can do is sit at the table until noon becuase she can’t function. They keep adjusting and upping her meds, but so far no luck. And she gained over 30 pounds already. I was very anemic 30 years ago when I gave birth to my first daughter. My lab values were half what they should of been. I know what its like to feel like crap and no motivation and tired all the time. I don’t want to chance feeling like that again. I realize I may end up having to do the RAI, but I won’t do it until all options are exhausted.
oh, Corrine, I feel for you! My heartrate didn’t come down until I started taking the methimazole. I am not a doctor, and I’m not telling you what to do, but honestly, if it was me, I would take 1/2 the dose and keep taking it until you can get back in to see the doctor, at least you will start using up the extra thyroid hormones that are stored in your thryoid and the methimazole will help prevent any more from being stored up until you can get more blood work done and so you can start feeling better!
But don’t do the methimazole and the lemon balm at the same time because you won’t know which one is making the difference. Try the lemon balm first if you can find it in a plant form. If not, they sell it at health food stores in a tincture formula, just squirt a dropperful in a glass of water or tea. It’s probably not as potent as the leaves, but at least it’s something. Also, eat lots of cabbage, brussel sprouts and broccoli, oh and they say that soy is a natural anti-thyroid as well. There ARE natural remedies for grave’s disease, it’s an awful lot of work researching and trying things out to see what works. For me, I really do believe the lemon balm leaves did the trick but I don’t take it anymore since I’m still on the methimazole.
Dianne,
I’ve read that cabbage, brussel sprouts, broccoli, and soy are goitrogens…but okay to eat if slightly cooked. Some sites contradict each other but all in all I try to stay away from these as much as possible.
Not sure if these sites are reputable but please check them out:
http://en.wikipedia.org/wiki/Goitrogen (I know you shouldn’t believe everything that’s on Wikipedia)
http://www.foodrenegade.com/dangers-of-soy/
http://thyroid.about.com/cs/soyinfo/a/soy.htm
Hi Ivy,
Is it no wonder we are so confused? My research has shown that goitrogens INHIBIT thyroid activity and that those foods may help manage the symptoms of hyperthyroidism until remission or destruction (RAI). I do add these to my diet, although not everyday and not in excess, but I can’t say for sure if they are helping or not since the methimazole seems to be working just fine for me. I absolutely stay away from soy, though, with my hormonal fluctuations during perimenopause, that’s just asking for trouble! Thanks for sharing these websites, I’ll check them out.
Hi Dianne,
Yes I am still so confused…so I try to stay away from most of those foods. However, trying to stay away from strawberries, peanuts, and soy-based foods (since everything is soy-based) is soo hard!
I googled “goitrogens INHIBIT thyroid” and found this site:
http://www.naturalendocrinesolutions.com/articles/goitrogens-thyroid-inhibiting-foods-you-should-avoid/
I’m really trying to find out what I can and can’t put in my body but not sure which sites to trust!!! This is so annoying!
My goal is remission and not having to resort to RAI. My endocrinologist advised me to stop taking methimazole (I was taking 10 mg.) because I went hypo. I get to see her this Thursday. I am really feeling the effects of being hypo.
Ivy,
I went hypo 6 weeks ago, (my TSH was 54.22!) and boy, that was WAY worse than being hyper! I was a slug for 2 weeks, fatigued, headachy, brain fog, lethargic, and I gained 10 lbs! My doctor cut my methimazole down from 30 mg to 20, but I took it down even further to 10mg on my own because I wasn’t feeling well fast enough. So my numbers now are near normal, still borderline hypo, but I’m on a maintenance dose of 7.5 mg and feel great! It’s so hard to know what I should be eating, but the easy thing I found right away that worked, was cutting out all salt (snacks, chips, pretzels, processed foods, boxed and canned foods, table salt, etc). and I try to eat as naturally as humanly possible. But if I slip up and eat some chips or something like that, my heartrate increases and I feel like crap, so I know its causing trouble for my thyroid and I avoid it like the plaque!
Good luck at the doctor, I hope you are feeling better soon, keep us posted!
Dianne
Thanks Dianne- I will try natural remedies for now. I don’t really want to take any more of my methimazole until I get a doctor OK and get some liver function tests set up because if it is my liver, then I’ll need to know. My appointment isn’t until Sept 8, so I have awhile to wait. I have this weeked off so I’ll go to the GNC Store and see what I can find. I wish I could exercise because my legs muscles have gotten so weak that I can’t even get off the toliet without having something to lean on. But I can’t hardly walk very far without my heart racing ad getting out of breath. The only good thing so far is that I lost 25 pounds, but I could lose another 30 and be OK. And when I was on the Methimazole I know it was working cause my heart was down to 85-90 after just 2 weeks and my BP was down and more stable.
Hi all!
Just wanted to drop a quick line and let you know that my thyroid levels are finally NORMAL after 6 long months of ups and downs with Methimazole!
My TSH 2 in feb. was 0.0012, then 2 months ago I did the HYPO dump and it went up to 54.22! we adjusted to 7.5 mg of maintenance methimazole and my TSH was at 7.94 last month, and just today I found out that it is normal at 2.18! What a ride!
While I understand TSH is not the only determining factor, my T3 and T4 levels were almost always border-line normal. Today they are exactly mid-range.
I was starting to lose hope but with today’s news I have found a reason to rejoice in my decision not to jump into RAI (I actually made the appt. to have it done in February, on the DAY I was dx’d with Graves) Thank goodness I have a doctor who supported the med route first!
Now if I could just get these damn perimenopause hormones under control just as easily!
Dianne
Hi Dianne,
Congratulations!!! Time to celebrate for not wiping your thyroid out and not taking a pill for the rest of your life, having a doctor who supported you, and being “normal” again.
I found out last week I’m back to “normal” (TSH is at about 2.7 and my 4 level is border-line normal). My endo is going to monitor me for another two months.
-Ivy
And congratulations to you, Ivy! What dose of methimazole are you on (if any) and how are you feeling? I think my body is still adjusting from being hypo, I now have occasional muscle twitches and achiness, but it’s nothing to complain about, really, compared to feeling hypo, what a mess that was.
I have one more follow up with my endo at the end of this month and since she specializes in “menopause and hormones”, I thought I’d stick with her and have her help me get through menopause. (I’m 49 and right dab smack in the middle of it!)
Sometimes my symptoms of menopause and thyroid (either hypo or hyper) overlap, and I can’t tell which is which, so now that I know my thyroid levels are normal, I can attribute the other stuff to hormones. Lovely good time being a woman, dontcha think?
Dianne
Dianne,
After my TSH shot up to about 50 and feeling like CRAP, my endo advised me to NOT take anything. I’ve been off methimazole for about 2 months now. I’ve stayed away from soy foods, the goitregenics, seafood, alcohol, coffee, and STRESS. I’ve also been pumping myself with fruits, veggies and vitamins. My endo says I can have seafood and alcohol..but in moderation.
I guess it’s all in my mind now that I know I’m “normal”. I don’t feel the effects of being hypo…I am loving life! And without the researching and coming across groups like this, I think I would’ve gone the RAI route. So I have a lot to be thankful for even though being a woman sucks sometimes…
BTW_Getting massages and going to see my chiro for adjustments also helped relieve the aches and pains of being hypo.
Good luck on your next visit and keep us posted!
Ivy
Hello Ladies,
I literally read the entire blog and each and every comment. I am 31, and was recently diagnosed with GD. It is upsetting that there are practicing doctors out there that know less about this disease than we do as a whole.
I was sent to get antibody blood work done as well as Radio Active tracer uptake test. This is all my University of Pennsylvania doctors which are supposed to be good at what they do. You would think that the results would be used to make an intelligent guess as to the dosage of meds to give me, but that is just not the case. I am 115 lbs, which is normal for me. I didn’t loose or gain weight with Graves. My TSH was .006 but it has always been on the lower side. In the past years doctors always told me that I was slightly hyperthyroid.
Anyway, my uptake was 80% after 24 hours. My initial blood work showed that my T3 and T4 were both in the high 500′s. Now this doctor wants to put me on 20 mg of methimazole. After reading everything on this thread that seems too high. I don’t want to go hypo. I am already losing hair and can barely move. My hands shake even with the beta blocker and my resting hear rate is 100.
I went to a nutritionist and was given supplements, I eat mostly all organic food, I avid soy, dairy, sugar and caffeine. I also quit smoking in fear of eye complications. I didn’t have the healthiest lifestyle but this was all brought on by my mother’s cancer diagnosis. Can anyone please let me know if you think that 20mg is high to start with. Just from your experience.
Thank you,
Biana
Biana,
I was put on 20mg when I first got GD. I was eventually weaned down to 5mg. So I think 20mg is fine as long as it is reduced down. Do you take several doses/day?
Jenny
Biana,
I don’t think 20mg is too high to start with, considering your numbers. The idea is to start high and block the production of thyroid hormones while the stored up hormones are slowly released into your system insteading in one big dump. Once that store of hormones is all used up, your numbers will start moving towards hypo. The trick is to make sure you get your blood tested every month until you are euthroid (SP?), meaning you are neither hyper nor hypo, but that your numbers are within the normal range.
I started at 10, increased to 20, increased to 30 (at which point I went hypo), then decreased to 20, decreased to 10 and now I am normal and am maintaining a dose of 7.5mg a day and have been “normal” for 2 months. It took 6 months for me, which I think is pretty normal.
Your hands should stop shaking after a few days on the methimazole and your heart rate should return to normal as well.
Although, I must say, my hands still have an occasional tremor, but I think that has alot to do with the caffeine in my coffee every morning, my hands usually calm way down my lunch time. My heart rate is in the low 60′s now, after being in the 100′s for MONTHS! It’s so nice not to feel jittery, jumpy, anxious, nervous, shaky and on edge. Between the beta blocker and the methimazole, you should be feeling better in no time!
I wouldn’t worry about the initial dose, you will be adjusted back down once your numbers level out a little.
Dianne
Biana,
I’m glad you’ve changed your lifestyle. I think that’s what helped me too. You also have to cut down on the alcohol and remember to AVOID STRESS!
When I was first diagnosed, I weighed about 125 lbs and at 4’11″, that’s overweight! I was prescribed 10 mg methimazole and was told a month later that my body wasn’t reacting to the medicine and I was a lost cause, remember? 15 mg made me go hypo and I was feeling like s*** but leveled back to normal when I was told not to take anything.
Your doctor, like all doctors, play the trial and error game. It all depends on how your body reacts to the medicine, so 20 mg of methimazole might help you?? If you feel that this dosage is too much ask to start off with 10 or 15 mg.
Hope you feel better and keep us posted!
Ivy
I have been on methimzole since March and can not seem to get things level.. Now taking 4 mg a day plus 150 mg of sythnthroid once a day. My doctor did not tell me to change my diet or to not consume alchol. When I asked about it he said there was no need to!
Brenda,
Believe it or not, it was my chiropractor who told me to change my diet, stay away from alcohol and caffeine…not my endocrinologist nor my general practitioner. I started seeing him when I was having all sorts of pains. He’s also advised me to buy vitamins from whole foods stores rather than at a local Walmart or Costco because they have “fillers”.
I encourage you to change your diet…it might help improve your conditions???
*Crossing fingers*
Ivy
Ladies,
My endo also told me to not change my lifestyle but that just doesn’t sound logical to me. I am trying to consume as little iodine as possible and of course not drinking coffee or alcohol. I must admit I do sneak a little dark chocolate here and there.
I am glad that you don’t think that 20mg is a lot. I was going to try to get a second opinion. I do have concerns about gaining weight. I was much heavier when I was on the pill many years ago, so I am afraid that taking methimazole will make me gain weight, too. Has it been your experience that everyone gains weight?
Thank you so much for all of your advice. I really appreciate it.
Biana
Biana,
Bits of dark chocolate won’t hurt you. Just keep doing what you’re doing. I was also told to stay away from aspartame, anything labeled as “diet” or “no calories”.
Taking methimazole didn’t make me gain weight…going hypo did, it slows everything down. I gained 10 more pounds even though I ate less and exercised.
Ivy
Ivy,
But once you came out of the hype stage, were you able to lose the weight? I now eat not to enjoy the food but to take in the nutrients. That is where I’m at. Thank you you for getting back to me.
-Biana
Biana,
I am, but it’s been a roller coaster for me. I haven’t worked out since my “good news”. I’ve been celebrating too much and then I feel fat and calm down a bit.
And Biana, it was through sites and facebook groups that got me through this because none of my family members or friends were going through this or has gone through it. I thought I was the only one going through this at the 32…so I’m glad to help any way I can.
-Ivy
I am still 60 lbs. overweight – and I believe it’s from the hypo – my doc said it’d be awhile before everything regulated out – eventhough on paper my numbers look fine. I am in remission, of course. if you’re on birth control, and if you can, I would get off of it! I believed that saved me!!
Hi
I was diagnosed with Graves disease about 1 month ago. But I didn’t start the Methimazole until this week. I have a tendancy to be sensitive to nmedication. I took 2 doses of 2.5 mg -2 days in a row and my ankle got swollen both days within an hour of taking it. Has anyone else experienced this? My Doc saw me immediately but suggested I continue to try it. I am a little concerned.
Hi Becca,
I had swollen ankles when I started methimazole, but not sure if it was from the grave’s or from the meds, it didn’t last long, maybe less than a week, I really didn’t pay too much attention to it. I’m glad your doctor was able to see you quickly and put your mind at rest, most people tolerate methimazole pretty well, the worst I got was some itching and hives that lasted 2 days until my body adjusted to it.
Good luck, I hope you are on your way to feeling better soon!
Dianne
Guys,
I went to a new endo today and she told me that since my antibody count was high and my T3 and T4 levels were high that I have a lesser chance of ever achieving remission. Has anyone heard of this, as well?
And she told me to take an even higher dosage than my original doctor. I think that I am going to go the acupuncturist and see what she says. She is also knowledgeable in eastern herbs. I will keep you posted.
- Biana
Biana,
Did your new endo run more labs on you? How high is high? How far are you from the normal range?
Just keep doing what you’re doing and don’t give up hope. Before you ingest any herbs, make sure they are not part of the goitrogen list.
-Ivy
Ivy my T3 and T4 were both in the high 500′s.
- Biana
hello!
I wrote to you a few minutes ago, but I’m not sure you got it, so I’ll write again!
I was diagnosed with Hyper a few months ago, I went to the doctor for my extreme weight gain and anxiety. Got blood work and my levels were low… .02 for one and the other was 173 (not sure which is which I’m petty new to this lingo) My first endo appt is friday the 19th (august 2011) and I’m not sure what to expect. I hate the heat, I live in buffalo so the summers are cherished but I’m wishing for snow. I have never sweated this much in my entire life, my clothes have water markes on them when i’m sitting around doing nothing, I have terrible thoughts, anxiety I can’t lose weight. I had my second child in june (2010) and I still weigh what I did when I left the hospital. I feel like I’m 92 instead of 32, my joints and muscles hurt. My father has Hypo and recieved the radioactive iodine pill, saw him in a world of hurt but he’s soooo much better now, on meds daily (synthroid) so I don’t know much about HYPER? HELP.
Hi Melissa,
I wasn’t sure if the message was for me or the entire site but I’m going to respond anyways.
I don’t know about you but I didn’t want my thyroid to be zapped and take supplements daily for the rest of my life. So I had to:
1) change my diet (because I had cup of noodles or fast food for lunch almost of everyday)
2) reduced my stress level
3) exercise
4) quit drinking caffeine and alcohol
5) took vitamins daily (I hear vitamins from whole foods stores are “better” vs. the Costco or Walmart brands with “fillers”)
6) stayed away from goitrogenic foods and aspartame (so I was very limited on what I could eat).
*I’m not sure if you smoke, but you have quit.
Also, I always ask for copies of my lab results from my doctor to keep track of my levels every month.
Make sure you let us know how it goes on next Friday and Good luck!
Ivy
Ivy,
Right about now I’m willing to do anything to feel like myself again. But thanks for the responce!
I don’t smoke, so I’m ahead in that department!
I drink coffee almost daily and drink a beer on occasion, nothing to bad.
I eat somewhat healthy, I love ice cream, so thats my down fall. I don’t eat fast food or red meat (at most once a month)
Exercise, Ugh I have no energy..but I am somewhat active (I have a 1 and 2 year old!)
Stress is an everyday part of my life lately, I’m a huge worrier. But I’ll try to lessen it!
I really appreciate your feedback and support.
Are you on Meds right now?
Melissa,
No, I’ve been advised not to take any more methimazole since late June because I was going towards the hypo side. My last test results showed that I’m within range.
Jenny mentions birth control in her past entries. I was on birth control for a very long time. If you are on birth control, you might want to consider other options.
Try not to do things that suck the life out of you. You have to find a way to stay calm. If you have access to a pool, swim or just sit and relax for a few hours. Vacation or a cruise? Your body is telling you something when it’s trying to fight itself right?
I’ve just read the whole blog and comments – very fascinating – I am not suffering with GD, but my husband has been for the past 2 years. We live in Africa and there is not much help here and he is being pushed to go the RAI route, which we are not happy about – it is great to read about the different ways you have all been dealing with this condition. Surely somebody somewhere must be looking into this famous “trigger” causing a person’s own immune system to “attack” the thyroid!?
Goodmorning everyone. I need to know if anyone has had burning of the nose and mouth and lips while taking methimazole? I have been battling with graves since Feburary. Going between hyper and hypo. The side effects from the methimazole are terrible for me. Does anyone else have this problem. Does anyone know of a different medicine to take?
Thanks Brenda
Brenda,
I’ve never had a burning sensation around my nose or mouth.
My doctor’s only told me of two: 1) Methimazole (generic for Tapazole) and 2) Propylthiouracil (PTU). Methimazole is the “safer” of the two for your liver. While PTU is the preferred drug for pregnant women in their first trimester or women who are trying to conceive.
Let your doctor know of these side effects and ask for options.
-Ivy
Just happened to stumble across this site. I was misdiagnosed, I guess you could say, in late 2000. Was eating everything in site and losing weight like crazy. Went down to 97 lbs. Photos from that time period show me looking almost skeletal. Still my primary care M.D. insisted my symptoms were anxiety. Sent me to a psychologist. Tried to tell primary care M.D. racing heartbeat, thumping in chest, inability to concentrate, extreme weight loss, etc., I didn’t think were usual signs of “panic attacks”. Saw psychologist for six months until primary doc, I guess, had a major insight and ordered a thyroid workup. It was Graves. Psychologist was furious, absolutely livid. Primary Care doc ordered RAI & I called the Nuclear Medicine Dept. at local hospital & made appt. to have it done. I had just gotten my first computer & decided to look up the RAI treatment. Was horrified the more I read. Called the Nuclear Med. Dept. & cancelled test. Decided to go the antithyroid rx. route. The endocrinologist I saw was not happy with that & tried to talk me into RAI. I said I could always opt for that later. He put me on Tapazole and it worked great. A year later I developed thyroid ophthalmopathy which put enough pressure on the optic nerve in one eye that a neat little piece of surgery (ha,ha!) called an orbital decompression was performed — Whew! Without this I would have lost the vision in that eye. Has anyone else had to have this surgery?
But, the main reason for posting was just to say I have Graves Disease, refused RAI, was put on Tapazole, developed the ophthalmopathy, had the surgery (no picnic), continued on the Tapazole until two years ago went into remission. That’s where I am today. No guarantee will stay in remission. Has anybody else ever been put on Tapazole? Oh, I believe that is the same as methimazole (?). Well just nice to find this site and I wish everyone well on their journey with this disease.
hi Helen im Ann from Ireland, im waiting to have operation on my eyes ive had to have 10 treatments of radiation treatment on my eyes they flared up and my doctor has had to increase the amount of steroids im on to settle it my operation will happen in January/February 20012 i like to hear how you got on and if you have found and vitamins or diet requirements that helped you thanks for any information
Have any of you tried Thyrosoothe or any of those types of remedies?
What about selenium? I tried taking a copper supplement and my heart rate went up to 160bpm.
Any thoughts on that route?
Frankly I’m afraid to take anything right now. No multi-vitamins or anything.
Oddly enough I was taking high doses of iron ( I am anemic) and zinc and virtually no copper before I turned hyper.
The only thing I am currently on is a low dose beta-blocker and magnesuium to help me sleep.
Hi everyone, have read the post from top till end. What a beautiful blog! I’ve been diagnosed as hyperthyroid barely 3 weeks ago. We were trying to get pregnant and after 4 months, decided to see the gynae for a check , turned out I have GD and been put on PTU. After a week of medication, I had severe gastric pain but my endo said it’s definitely not the meds that’s causing the gastric. Saw a GP for gastric meds cause I was in too much pain. Has anyone experienced gastric reflux while on ATD?
Hi Cherie,
I was diagnosed with GD in February and have finally normalized my levels while taking Methimazole. I don’t have experience with PTU, but I did get BAD heartburn and reflux for the first month or so while on the methimazole. It went away almost entirely, but it does flare up occassionally, depending on what I’m eating, so I try to avoid spicy foods, tomato based anything and citrus fruits and juices.
Good luck and feel better soon! Good luck with your baby plans!
Dianne
Hi Cherie,
We’re in the same boat…was trying and decided to see my GP.
I agree with Dianne. Take a look at your diet. You also have to avoid caffeinated drinks (coffee, soda). Eat healthy and stress less!
Lots of baby dust!
Ivy
Are you on PTU too Ivy? How is it going so far? Does your endo still encourage you to TTC while on meds? Mine does but I’ve decided to wait a while and see how the treatment goes.
Cherie,
I’m currently not taking any medication since my levels have been within the normal range. My endo encouraged me NOT to TTC while on methimazole because it can cause birth defects and was advised to wait until my levels were close to or within normal range.
BTW_My first endo put me on methimazole because it’s safer for the liver.
Link: http://general-medicine.jwatch.org/cgi/content/full/2007/619/1
Thanks for sharing your experience Dianne. I usually have spicy food.. Been brought up this way and only had the flare up while starting the meds. I will try to watch my diet moving forward. Happy to hear that your level was stabilized after 6 months or so .. That’s pretty quick and gives me strength and hope! May I know how far off was your TSH and TRAK when you were first diagnosed?
Nice article – thanks so much. I’m seeing my endo again next week and hope my levels are better. Lotsa baby dust to you.
HELLO Everyone, went for my yearly check up, My primary dr ask me how i was doing with my GD. I said fine. Haven’t taken the medicine for almost 3 months. I was cutting them down, cutting in half. what ever it took for me to go from hyper to hypo. I told her that i regulated myself, because you guys don’t know how i feel. End result, she was upset, telling me how not taking the pills can affect my kidnye or liver and my muscle. I told her that i feel like my old self again. She said ok lets get some blood work, result came back – Fine. Thyroid a little high. She said ok. you don’t have to take the medicine, make sure i see you in 3 months. If you guys read my prev posts. you would see that i was telling them that i was in remission. So – somethings you have to adjust for yourself, they know the blood numbers, but i know my body. I feel great so far. Get a little hype, but i take myself out of the situations/stress
Went to my docs office for my first endo appt. More bloodwork. The results came in and wouldn’t ya know, I have hyprethyroidism. (DUH) She put me on a blood pressure medication (beta blocker) and I have to go for a scan and uptake. Then more blood work and a follow up appt on sept 30th. Whats an uptake? I guess my doc is trying to determine what I have, she said there are a few forms of Hyper. Time will tell, but I am releived that there is an explanation for how I have been feeling.
Hi Melissa,
My endo also wanted me to do the scan/uptake, but I cancelled the appointment because I wanted to avoid even a small amount of radioactive iodine. Below is a copy Jenny’s response when I’d mentioned the procedure:
“I am not excited to hear about the Thyroid scan – that’s when they give you a small dose of RAI, so that your thyroid “glows” under the scan!
McIver thinks that’s totally unnecessary – and again, if you want to avoid radioactive iodine, then even a small amount isn’t worth it!”
As of 4 weeks ago, my levels have returned to normal range without the scan/uptake procedure.
-Ivy
Hi, I was diagnosed with hyperthyroidism almost a year ago now, and have probably had it for quite a a few years. I have been putting off RAI because I am, like many of the people on here, nervous about how it may affect the rest of my body. While reading this last night I decided to put it off for at least two more years and get on methimazole, as thus far I have not taken anything except propanolol for my racing heart, which hasn’t seemed to help anyway. I am wondering how Jenny, I think her name is, is doing now. I did not notice any posts after about Nov. of “10″.
Thanks, Ann
Hi Ann,
I was diagnosed in Feb. 11 with grave’s disease after I noticed my heart was racing for no apparent reason, even while I was at rest or in bed sleeping. I had already been on toprol, which is also a beta blocker, but that still didn’t help with the heart rate issue. Nothing really helped until I started taking 10mg a methimazole a day. I would say within a week, I noticed my heart rate was returning to a much normal rate. I had itchy skin that lasted about a month but it went away. Today, 6 months later, my thyroid levels are normal and my heart rate at any given time while at rest or in bed is between 60 and 70 bpm. I am on a maintenance dose of 7.5 mg of methimazole a day and my doctor is okay with keeping me on it long term or until I go into remission on my own…meaning without having the RAI. I was lucky to find an endocrinologist who prefers to use methimazole FIRST, because the chances are very good that you will go into remission.
Good luck and keep us posted! Dianne
Ann I was diagnosed over a year now, and they started me out with propronol and methimazole, I took that medicine for almost 1 year.
With the methimazole, my ankles started to itch like crazy, it went away after a couple of week, couldn’t sleep. It all went away after a couple of months. As the month went bye, i notice i was gaining my weight back and i was getting more tired. I had blood work she increase my propanol to 80 a day and increase my meth to 10 2x a day. I notice that i was getting tired a lot. so i figure i’ cut the meth in half. and it work for me. I was so tired. Then as month went bye, i just started weaning my self off gradually. so far i’m ok They wanted to take my thryroid out, but i didn’t let them. I just tried do things on my own and what i have learnt and book that i have brought. Its working for me Amen.
Lady, thank you for your encouraging words. I am nervous about itching and tiredness from the methimazole, but I guess I have no choice for now if I want to protect my heart, bones, muscles and everything else I suppose. I certainly do not want to do the RAI, so here I go…………
I’ll let you know how it goes, my app. is next Tuesday.
Thanks again,
Ann
Hello,
I have just finished reading this blog and found all the information very insightful. I am 23 years old and exhibit one sign of hyperthyroidism, a slightly enlarged thyroid, and as a precaution due to my family history my OBGYN ordered a TSH lab. I had no idea I was going in for the blood test, she told me it was a blood pregnancy test to make sure I wasn’t pregnant before I started Birth Control because my period was 6 days late. I figured it was late because of the stress I was going through starting a second part time job and waking up at 4am to get to work. Thinking I was pregnant set me on 2 day panic attack, I couldn’t think of any other reason for the test (mind you I had taken a urine test in the office that came out negative but she said she was sending me anyhow). The lab informed me there wasn’t a pregnancy test on the lab order, so I called my OBGYN. Her assistant told me the doctor didn’t think I was pregnant and thus didn’t order the lab. I was furious at her for not telling me in the office, but felt so relieved after hearing she didn’t think I was pregnant. It was like a weight was lifted off my shoulders. I started my period that night and started my BC. She called a few days later saying my hormones are really low (didn’t give me a number) and that I need to see the Endo or I will gain a lot of weight and lose my hair (symptoms of hypo). My mother and grandmother are hypo, in fact their thyroids completely stopped functioning in their late 20′s.
I went to my PCP, and he didn’t look at any results, didn’t order blood work, only ordered an uptake scan, which cost me some serious money. My 6 hr was 38% (norm 5-15%) and my 24 hr was 43% (norm 15-30%). The test said at the bottom that it was diffuse toxic hyperplasia (GD). I have my appointment with the Endo in 2 days and I know he will order a panel of blood tests. Since the uptake results I have stopped surfing, stop taking vitamins except Calcium and D and decided today to go off the Pill. During my first week on each pill cycle I have muscle spasms and cramps in my neck and chest, but only for the first week. I feel so much better when I am off of it during the placebo days. Reading this blog has given me hope since finding out there is no cure, and a great deal of knowledge as far as treatments are concerned. Thank you everyone!
Hang in there, and do your best to stay away from stress, and negativity. Laugh more and hang out with funny people, postive people. Give it time to heal itself
Hi Dianne, Thank you so much for responding. It helps so much to read everyone’s stories. I don’t want to do the RAI, but the methimazole makes me nervous too. Does your doctor have you tested regularly for liver problems? I scheduled an appointment the very next day after I read this blog. But unfortunately I have to see the Physician’s assistant because I would have had to wait till the end of Oct. to see the actual doctor and my heart is so out of control, and I’m so ridiculously weak that I can’t wait that long.
Again, thanks for the note.
Ann
Hello Ladies
I finally go into see a Endo. And he also recommended the RAI. He said there is a great benefit to this and has many patients benefit from it. He stated meithimzole will always be a struggle, which I am at this point unable to get it even. He also, said remission can happen but will only be short lived and then you are back to square one. He also, said what usually happens is that the thyroid will eventually burn out. I was also told the same thing from my family doctor and the internal med doctor that I had seen. Has any one had RAI? Staying away from stress is not a option!!!!!
Brenda, I have had it and would not recommend it! I have a very stressful life; work, kids, school and single parenting.
I did mine in 2005, which they have not done another scan since so it may have came back; I’m a little stupid to the whole thing. But all I can say is if you do, you will have no choice but to take medicines the rest of your life and no promise of being regulated.
I thought I would be smart one time, stopped taking the meds for about two weeks and reality hit. I went to the Dr. and said, “I feel so good.” She asked what I had done and flipped out!! By not taking the meds after having the RAI, you take the risk of the nervous system going haywire and possibly having heart attacks. At least if you still have the thyroid, you have the option of what you chose to do, unlike the RAI choice!
Brenda, best wishes and hope everything works out for the best!
Hello everyone!
I thought this was something everyone should read.
It was created by someone from the “Surviving Graves Disease” page on Facebook.
http://sgd.m.webs.com/site/classic?url=http://sgd.webs.com/&back=http%3A%2F%2Fsgd.m.webs.com%2Fsite%2Fmobile%3Furl%3Dhttp%3A%2F%2Fsgd.webs.com
The part about nutrition was based on this article: http://www.litalee.com/shopexd.asp?id=213
Hiya!
I’ve just finished reading your great story and the blog comments and gotta say its quite scary to hear how quickly US endos are recommending surgery or RAI.
I live in Adelaide, Australia and I was diagnosed with Graves in ’08 but my endo said I’d probably had it from very young or even from birth as I have a couple of white patches (like birthmarks but white) on my legs, have always had very irregular periods, my hair went grey at 25 and I’ve always had the issue of insomnia, excessive perspiration and extreme reactions to heat and cold. At time of diagnosis, I had severe symptoms of uncontrollable hand shaking – so much so that I went to the doctor expecting to be diagnosed with something like Parkinsons. I also had extreme weight loss (wasn’t complaining about that!), heart palpitations, neck pains, insomnia, constant perspiration but ice cold fingers & toes and frequent momentary loss of balance (something that the endo thinks may be something else but I know that each time it happens, my GD is ramping up again). Before diagnosis, it took several visits to the GP before I was eventually sent for bloodwork and an ultrasound of my neck (to check if any polyps were growing on the thyroid). This proved off-the-chart readings and an extremely enlarged thyroid but no polyps, so I was then referred to the endo unit at the local hospital and booked in for a nuclear scan of the thyroid to check no cancer was deep within the gland. This test wasn’t at all comfortable as I had to lie in a flimsy gown on an extremely cold metal table in the centre of a huge room for almost an hour, surrounded by booths where the nuke technicians stood to control the scanning table and keep them safe !! I wasn’t “reactive” after the test though and I didn’t have to stay away from people after it – I went straight back to work! Whilst at the hospital, they also tested my bone density and checked levels for anemia, diabetes and something else (so many tests all in one afternoon!) The endo gave me some pamphlets to read and asked if I had any questions … I had no real idea of what I had so I didn’t know what to ask!! It has only been at my appointments over the past year that I have learnt much more about GD and how it works, what it affects and how it can be controlled.
I’ve been on Carbimazole but I’m really bad at taking my meds regularly because they definitely put weight on more quickly and make me feel very hypo. I have also missed quite a few blood tests and follow-ups because I don’t feel hyper and I often can’t get away from work for half a day!
Anyway, the reason I wanted to add to your blog was to let you know that here in Australia it is extemely rare to have surgery on the thyroid – it is only suggested if it is cancerous or the polyps overtake the gland. It is also considered an extreme measure to use RAI – doctors here don’t even consider it until you’ve been on meds for at least 2 years and there’s been no improvement and even then it won’t be their next option – the doctors here will try everything else before resorting to this treatment.
Also, just another little note, I was off birth control for four years and it was during that time that I had my worst symptoms of hyper. I’m now back on the pill and have gained a lot of weight (not happy with this) and rarely have any GD symptoms at all, without taking the meds!
Ok, this turned into far more of my chatter than I’d intended so i wish the very best to you all with your own GD daily battles and I really believe that a happy mind keeps a healthy body so please stay positive and keep smiling through each day
Cheers ! Clare
Clare,
Thank you for giving us a glimpse at the Australian perspective. Where you taking Carbimazole when you went off birth control for 4 months?
Jenny
Found this site tonight—read most of all.
I am surprised that have not read of anyone going to a medical library and reading up on the thyroid!
I have Graves and Hashimotos—yes you can have both. Plus CAD now. My two sisters have RA. You can get other autoimmune diseases with. If stay on Methimazole
long time—liver can be affected. I was 58 and boardline. When found out granddaughter was to be born with 5 holes in her heart and no pulmanary artery—boom 12 days later landed in hospital with a viral infection in one lung—no coughing or spitting. When ER gave me water 10 hours later—I want A-fib of 194. Don’t feel anything different. Could walk around. Took four days to get down to 144 and losing 2 pounds a day for 10 days. Met my Endo while in the teaching hospital. Tells student doc, see how she stares and ridges on nails. Yes I always sweated—thought due to Adriactic blood from Korcula. Yes, it’s inherited and explains why Baba died at 67 in 1959. I gained weight at 27 for no reason—no doc then. I was in hypo stage (and that messes with heart also.
So on Warfurin (blood thinner/rat poison). 34 blood draws that year and 24 doc appt—Endo, blood doc, eye and primary. Luckly on Grand Jury and could work around . As of June Social Security will give disability for people who have Graves like me.
I was on Methimazole—taken off in Oct 08—Dec both my arms hurt for one hour. Figured heart attack—went to ER at my hospital 55 miles away in morning. Yhap—said I had a bunch of heart attacks and sent me over to the heart hospital. Tests showed 80% blocked—doc said I was a walking miracle. Said right—I walk slot. No car and live on a mountain—hill to walk so quad by-pass.
Also in that two year time, left eye buldge out. Stare worked great in keeping people away from on small rural bus . Also for hearings, made witnesses nervous. Had orbital decompression in Jan 10. Titanium plates put in Temples. Also could give blood again one year after heart surgery. Gave platelets again after stop blood thinner. Take two meds for heart and aspirin. Had thyroid put in July. No pain from any of the ops. Only when laugh(ribs) cause of heart. Doc said must have a strong mind—said yes and pointed up. I wasn’t put on a Beta-blocker till heart attacks. All heart tests were normal when A-Fib attack. Yes, eyes can buldge again.
O thyroid storm can kill—read up on it.
Since I have a son with Spinal Muscular Attrophy III—I have always read up on diseases. Every one carried defective genes. Was a one-out-of-a- million chance my ex and I had the se ones. That one-out-of-4 children can get. 2 sons.
It’s a crap shoot in life. We all die of something.
Want to make a doc mad—ask if they flunked out of Vet school. Lots have. Also are you my body—and are you God. I spent 5 years around Army hospitals on early 70′s and learned a lot about docs.
Since using an iPhone—too hard to correct any mistakes.
I keep info on symptoms of Hypo and Hyper in my wallet—when talking with someone. Son’s schoolmate—now 40 has Graves. So can talk with her when she’s up for a family visit. She has a brother who is a doc—so that has helped. I am the 1% who has gotten most all from the Graves. Least no mental issues. Yes you can get worse with this. I plan to keep on donating blood and platelets—so can do for my granddaughters next heart op when she’s 6-7. She’s 4 now. There is Lupus on my ex’s side. Hoping nothing is passed down to her. Hoping and praying. Also cures for the over 46 Muscular Dystrophys. Two of Mypothythyroid is listed with them now. Which effects upper arms and legs.
Read people and not just the Internet . Would you want a doctor who was trained from what he read on-line!!! Hope not. That’s why there is research, studies, trials and Books. Thank You
a viral I
THanks Donna. do you still have your Thyroid. Did you have RAI?
Brenda
Surgery July 2011 thyroid taken out.
Since I passed heart tests for orbital decompression—I opt for surgery for thyroid. Had to do heart tests again, passed. Reason I did nit want RAI—if have Graves Op you can get Double Vision. Not all docs tell you this. Nor give patients any info on the disease. My Endo had read one new report that has new info on this. Said not good enough—as I am the 1% that gets everything from the Graves. Plus it’s a teaching hospital and they keep up on things.
G
Since responded in wrong way—will add here.
All the younger women (and older), Graves can give you osteoporosis. The parathyroid is right on the thyroid—4 spots. That controls the calcium in the body. Can see why they call it butterfly shape. A bone scan should be done every five years to see how the bones are doing. Calcium and Vit D is important to this. When I have donated platelets, I got cold at times—was given Tums ( and warmed me up right away) because of the calcium level dropping in body while blood going through machine.
Smokers made Graves op worse—cause of the smoke in their eyes, drying them out. Outside of the corneas being affected—one could go blind. Bad enough double vision can get from RAI if have Graves Op.
Thyroid messes with hormones. Wonder why more women have it then men—cause we have more hormones? Not enough Endo docs in US. Would be nice that all docs have one of the diseases they treat. Make things easier for everyone.
First med for thyroid was made from pigs thyroid—since that can be unreliable—hence the chemicals. I don’t like preservatives or meats. Then again everything on earth is made from minerals or chemicals. I believe in stem cells. Don’t feel bad that thyroid research has nit come along way in over 50 years. Neither has Muscular Dystrophy and Mr. Jerry Lewis has done a lot for making MDA known to the public. Since my 40 year son is one of his kids. There is nothing can be done for SMA III. Yet there are things that can be done for us. We all will die from something—just a matter of time and when it catches up with us! Thank You
Hi! I love your post!
I have been diagnosed with hyperthyroidism on September 2010 and got pregnant after about 2weeks but only knew it December 2011 and had to immediately change my anti thyroid drug to PTU. Thank goodness my baby’s new born screening is normal. I haven’t been taking any anti thyroid drug after giving birth. Will have my TSH, T3 and T4 tested this coming Friday. Big thanks to yout I would certainly not opt to RAI!
You’re welcome. Congrats on the baby! Are your thyroid tests normal now and that’s why you aren’t taking meds?
Jenny
thank you!
no it isn’t normal yet it kinda soared a little bit when I stopped taking meds. I don’t know I just stopped but I’ll visit my endo this friday so I could take meds again. I hope to be well the soonest possible time.
I just went off birth control pills 2 weeks ago after taking them back to back to control severe anemia. I feel better, however I reduced my tapazole dose by half for 6 weeks, and now my numbers are in the toilet. I never forgot your post about getting of the BC pill, and finally brave enough to go for it! No period yet though, have to see what happens! Everyone join the facebook page called
Graves’ Disease, Hyperthyroidism and Thyroid Eye Disease
Seems other pages mostly talk about hyPO take care everyone
I hope you only reduced your dose because your doc told you to!
endo says i have graves disease, and something with the parathyroid. too much calcium in my blood. I’m on 20mg tapizole and 10mg propanonol. feel like absolute crap. Hopefully I will be back to normal soon.
Melissa,
Sorry you’re feeling like crap, the meds should start helping you feel better within a few days, hang in there!
Remember to get your blood tested again in 30 days to find out where your levels are because methimazole works quickly and before you know it, you’ll be going hypo if you’re thyroid levels out before you reduce your dosage (per dr. instruction and blood results).
It’s been 6 months for me and I’m finally “normal”. It just takes a little time.
Dianne
I was told by my endo that I should take my methimazole all in the am, and my propanonal all in the pm. Does that sound right, my pharmasist said its a lot to take in the am, kinda strong. Hmmm
Melissa,
I would agree with your pharmacist. My endo had me split my doses in half, one in the a.m and the other half at night. It’s always a good idea to keep a steady, even amount of methimazole in your system so your antibodies don’t get confused and kick in when you are wearing off. You’ll feel better too.
At my highest, I was taking 15mg twice a day (for a total of 30mg day). I was way overmedicated at that amount and went completely hypo. I was sicker than when I had original hyper symptoms!
Currently, I am taking 6.25 mg a day maintenance dose, but I still split that into 2 doses, .50 in the morning, and .75 at night to keep level amounts in my system.
Initially your doctor might want to halt all production of thyroid hormones with a larger dose, eventually you will taper to a smaller amount, but you should really be splitting that dose half in the morning and half at night. Just check with your doctor first, but it really should be just fine.
Dianne
I have been sick for about 4 years, just recently found out it is Graves. I am so confused! They are wanting me to do the radiation, but I am so scared. I just know these have been the worst 4 years of my life. I’m 36 and I am currently taking 30mg of Meth. I was up to 60mg but became hypo and now taking 30mg a day. Has anyone done the radiation and felt better?? I am just SO tired of being sick!
Hi Jen,
So sorry you’re feeling so badly, but you’re not alone and things WILL get better for you! First of all, make sure you are getting your blood tested every month to check your levels. Ignore the TSH number for now and make sure your doctor is treating your free T4 number because in grave’s patient’s, the TSH is SUPPOSED to be suppressed for quite some time, years actually. If you went hypo already, you may be ready for another dose adjustment. I went hypo at 30 mg and never felt sicker in my life with hypo symptoms!
I’m now on 6.25mg day maintenance dose and feel GREAT!
My doc also wanted me to do the RAI at first (because it’s easier for THEM to treat a hypo patient after RAI destroys the thyroid and you become hypo for the rest of your life!). Anyway, I said yes to RAI at first, but luckily had the weekend to think about it and research it further and decided I would try the medication first, which has an excellent chance of giving you remission plus you get to keep your thyroid! So I am working with my doctor is is totally on board with me being on methimazole for however long it takes to achieve remission. And even if I relapse, she STILL would go back and treat me again with methimazole.
So give it sometime and find out all you can about grave’s disease, you have to make some changes yourself, it won’t go away with just the medication, you must eliminate the triggers (iodine, stress, caffeine, seafood, smoking, etc) and get on a good women’s daily multi-vitamin that does NOT contain iodine! Many people think thyroid disease is caused by an imbalance in copper, zinc and iron so be sure to have your blood levels checked with your next labs. The multivitamins contain a good balance of each of these essential elements to help bring your thyroid back into balance and keep it there.
I’m six months into treatment and really feel better than I have in years, I really believe it’s due to the methimazole treatment, change in diet and the multivitamins. Send me an email anytime if you just want to vent gracie62@comcast.net
Best of luck to you!
Dianne
Thank you for writing me back! I called my Endro. and cancelled my radiation. I am going to try to do this! Thank U! Sometimes I feel so alone in this….I have 4 children and a wonderful hubby, but no one really knows what it is like. I had recently switched doctors, I LOVE her….she REALLY listens. The other doc. had me taking 60 mg a day, when I first saw him I was in a thyroid storm but that is A LOT of meds. I am only 5’4 and 125 pounds….I was about 118 when I saw him, but have returned to my normal weight. My new doc. put me on 10mg a day….I am already starting to feel better. Thanks for the encouragement! I was ready to yank this thing out!
Jen, so pleased to hear you are doing better – sounds like the first doc was way overdosing you!
Wanted to let everyone know that I went to Mayo last month and updated the blog post – I’m still in remission!
Just an update for me-I had gone to Mayo several months ago and was put on 40 MG Methimazole. Within 17 days I had dark urine and horrible itching. My liver enzymes were way high and they took me off the meds. I asked my endo at Mayo if I could try a low dose and he said absolutely not and to come right away for RAI. I was not happy about this so I looked for a new endo. I found one in Des Moines that I just love. He spent way more time with me than the Dr at Mayo did. This Dr went thru everything, even though I knew a lot of the info already. He is letting me try the methimazole again, and only put me on 10 MG a day. It’s been almost a month now and I feel so much better. All my shaking is completely gone. I had my T4 tests done and they told me it is still high, but it has come down a lot, so he is keeping me on just 10 MG for now. I don’t know my levels because I haven’t requested a lab report yet, but I plan to get it so I can follow along. I am so glad I looked for a different Dr and got a second opinion. My liver enzymes were someone elevated again, but not nearly as high and he said not enough to make me quit the pills. I hope this works for me in the end! At least this Dr is letting me try! It is always worth a second opinion.
Hi Jenny!
I am new here and would like to join.
I am 33 yeas old and also have Graves disease this is the second time. First time I got it and was treated with meds for 1.5 years and got into remission for 1.2 years. Then
I got it back and now on meds already for 2.5 years. I have blood test in normal range for quite some time (about 2 years, but antibodies went to normal range later) and now on 2.5 mg/day dose of thiamazole. I am ok (with some ups and downs of course), and my aim is to beat this disease so that it will never return. My question is did your ever measure TSH antibodies? And what was the value when you stop medication? As I understand this is the main factor which can confirm remission (since this is autoimmune disease). If TSH antibodies are zero or very small then remission with high probability is going to be stable. My value is small (in the normal range) but not zero. So I am wandering should I still continue with decreasing thiamazole and stop meds when antibodies disappear completely or low value is already enough? Do you have any idea? My doc is too busy so he just contacts me by post and I cannot ask him easily, anyway he recommends to stop meds and see, I am sort of worrying weather I should stop.
Where are you located? Are you on birth control?
I live in Germany and was never on birth control. Just a small comment, when I wrote about TSH antibodies I meant TSH-receptor antibodies, they just “play” a role of TSH and stimulate thyroid to work like crazy. Have you ever tested it?
i m mursal 21 year old i have diffuse goiter is that grave diseas i have done two blood test from different hospital 5,, 6 month ago the test result was normal t3 t4 n tsh
sorry for my bad english :s,
dr take me on beta blocker inderal i m still taking beta blocker 20mg twice aday 6 month continually taking beta blocker, i have lots of pain in my back n palpition i feel suckx
I was diagnosed with Graves in Summer of 2008, right after I had my gallbladder out. Was losing weight rapidly and felt really jumpy and anxious, not to mention my resting heart rate was 114! I literally ate anything and everything and lost about 20 pounds in about 3 weeks. No kidding – bought a pair of pants after work one day and the next day they were too big. Went to endo that said I definitely had a sever case and needed RAI pronto. I didn’t feel comfortable with doing RAI as it’s not reversable. So, she worked with me. She is a great endo who listens and respsects what I am saying and feeling. She agreed to let me stay on Tapazole for about 2 years. Every now and then when I would do blood work, she would bring up RAI (but not strongly) and I would just say no thank you. I honestly would rather have my thyroid surgically removed than have RAI! Well, after about 2 years I am in complete remission! YAY! Drugs seemed to work. I still follow up with her every other month for blood work, etc. and will find out next week if we are still a-ok. I am under a lot of stress (which I think played a factor in the original diagnosis) so here’s hoping my numbers are still normal.
Good luck to all of you out there who are dealing with this disease. Each case is different and there is not one magic way to deal with it. Listen to your body and of all things, find an endo that will listen to you!
Lisa,
So happy to see you’re doing so well and are in remission! Thank you so much for sharing your story, it gives the rest of us hope! I also found an endo who is willing to work with me and not push the RAI. I’ve been on methimazole (tapazole) for 8 months and feel great (after some adjusting, of course!). I’m hoping I have the same kind of success as you, achieving remission without surgery or RAI. And I agree, if it came down to it, I would rather have my thryoid surgically removed than undergo RAI!
Good luck to you, please keep us posted!
Dianne
I’m a couple of wks. pregnant and have grave’s disease, I been switched to PTU, for some reason I started experiencing shortness of breath. We you in herbs and using holistic treatment during pregnancy? I really don’t care for PTU and I wish I can just not take it.
Thanks,
Jessica – are you talking to the person that wrote this page or someone in the comments? I am the one that wrote this page – it is my Graves Disease story and I was not pregnant while I was on PTU. Jenny
Jessica, from my doc, Bryan McIver: “PTU is usually the drug of choice during pregnancy, because it is less likely to affect the baby’s own thyroid function (doesn’t cross placenta so much). Goal is to keep the dose as low as possible, so that Mom is left just a little thyro-toxic….. safer for baby that way…..
But untreated hyperthyroidism can cause pregnancy loss (miscarriage) and premature labor, so it’s a delicate balance….
If she can’t tolerate the PTU, Methimazole is OK, but just needs a bit closer monitoring of the baby…..”
I was taking methimazole and propranolol for 6 weeks and started to feel great. I went back to the doctor did blood work and found my liver enzymes became slightly high my doctor said to stop taking methimazole i have stopped. I am still taking propranolol. Do you think i will starting feeling awful again. My antibody is 3.4 my tsh is 0.02 and t3 is 4.05 my t4 is 1.06.
Found this site by accident but would like to testify as a happy RAI “survivor”.
Got Graves after a Jan 2004 surgery. Diagnosed that summer – took awhile because I already had an “impatient” personality. Was losing weight on nonstop milkshakes and thought I’d discovered the secret of weight loss (yes, thyroid hormones are very important to thinking straight).
Went on beta blockers and Tapazole. After a month or so, had bad allergic reaction. Switched to PTU. Between the horrid flavor (I’m a supertaster) and crippling muscle pain as a side effect, I requested RAI – see “impatient” above. Doc reluctantly agreed.
Took about 4 months to become hypo then started Synthroid. Felt great for 4 years then started developing very bad brain fog. Doc switched me to Armour and I’ve felt great since. I do have weight problems but can keep it under control; just have to work harder at it than other people, plus being 57 probably doesn’t help.
I also take estrace and prometrium since a hysterectomy – also not doc’s 1st choice – for endometriosis in my 30s. Was the 1st time in years I felt “right”. Some bodies do better on pills than on “homegrown”.
Can you have Graves with normal t3 and t4 but TSH low?
Hello everyone,
Like most of you I just happened to find this site and think it is very interesting how people all react differently to Graves disease. I was first diagnosed 7 years ago. My doctor recommended RAI treatment so I chose to believe that he was the professional and took his advice. It is one I regret to this day. I know for most people this works and they lead a normal life after the treatment. However, there are some, like me, that end up hypo and it can not be controlled. The doctor had told me that eventually I would only have to go for blood test once a year as they would find the right dosage of synthroid. Unfortunately never worked out that way for me. I have gone for blood test anywhere from every month to the most every three. Nobody seem to know how to regulate it. I am 41 years old, 120 pounds, 5 foot 6 inches and was taking synthroid up to 200 mg. Still, my gland was shooting down. They recommended a naturopath who suggested to give me straight t4 and t3. I’ve upped my meds three times already in the past 4 months cause it keeps going down. I have been living hell for the last seven years. I am all over the place. I am so tired of living like this but nobody seems to know how to help me. If I could go back in time, I would have never opted for the radio iodine treatment. It’s hard living being hypo all the time. I feel like I am on a roller coaster. It is taking a toll on my body and my mental health. I am not writing this to persuade anybody of anything, but I do think it is important to know everybody’s experience (good or bad) before making such an important decision. I wish you all the best of luck!
My experience with iodine might surprise people. I think there are no experts on Graves disease and iodine. There are so many conflicting opinions based on the flimsiest of evidence and it’s obvious that a lot more research is needed.
I was diagnosed with graves disease together with the unpleasant thyroid eye disease. The specialist who I saw recommended the complete removal of my thyroid but there was no way I was going to accept that. I didn’t know if taking iodine was good or bad for Graves disease due to the lack of proper unbiased research in this area (drug companies are businesses and want to make profits so there is an immediate conflict of interest).
Anyway there was only one way to find out whether iodine was helpful or not and someone had to take the risk so I did. I took 50mg of lugol’s iodine every day for two months (for the first 45 days I also took various herbal medicines). The results were that my thyroid eye disease is almost completely cured now and my thyroid has became underactive. Hopefully if I continue to take iodine my thyroid functioning will normalise but I don’t know for sure as I’m in relatively uncharted territory. What I can say for sure is that the Wolff-Chaikoff effect doesn’t exist in my world.
For me so far taking iodine has been worthwhile but for others taking it is entirely at your own risk.
Tom, I am pleased to hear you had success with iodine and furthermore that you shared it here! Thanks for sharing! Jenny
Hi Jenny, thanks for sharing your experiences too. I was thinking that your thyroid may have been the same size as when your regular endocrinologist saw it when McIver and Miles saw it. People’s opinions on size are very subjective, as is their choice of descriptive words. Additionally people can be poor judges of the size of anything.
Your regular endocrinologist didn’t say your thyroid was normal size and could have understated the size. Equally the two Mayo clinic doctors could have overstated the size. Without precise measurements it’s difficult to know either way.
The reason that I mention this is that like you the iodine also reduced my excessive sugar cravings and hunger. The iodine is at least promising in this way. But equally it’s possible that the iodine could have enlarged your thyroid gland. Although my thyroid gland wasn’t enlarged by the iodine every individual is different so who knows what the effect would be on other people.
Hello to you all,
My Name is Carolyn and I live in Adelaide South Australia
I have have Grave’s…..
After reading each and every blog I decided to post my storey and hope that it helps…..
I work really long hours, somedays up to 19 hrs a day and the longest to date a 23 hrs day, I am on call for 14 days out of every 21,
but I have been doing this particular job for 19 years so I have never put it down to stress just age.
I am about to turn 50 and have never been sick a day in in my life
well that all changed in September last year…
Leading up to a visit to the doctor I was really tired but put it down to work, I started to really feel the heat and would just break out into a sweat for no reason. There were times when my leg muscles would shake. One day I was climbing the stairs at work (one flight) by the time I got to the office I was out of breath… Time to give up smoking I thought ( when you work such long hours a cigarette break was all that you needed to keep you going). I thought nothing of it.. then
one morning I woke up and my eyes were swollen like I have been in a fight and was used as a punching bag, there were bags of fluid under my eyes and they were swollen in the upper orbit…. I was not happy,
vanity and nothing else made me go to the doctor a week later.
We are very lucky here to have such switched on Local GP doctors.
He looked at my eyes, listened to my heart beat and took my blood pressure. The next question he asked me was how long I had been waiting in the waiting room (15 min).
The next thing he said was “I think you have an over active thyroid
your resting heart beat is 120 beats a minute (should be 60), your blood pressure is good and your eyes have a lot of fluid around them. I think we need to get you to and Endo straight away.” He also put me on Atenol to bring my heart rate down (but not too much as my pressure was normal) The appointment for endos are booked up for months so he sent me to a hormone specialist first. Not much use but he got me into a hospital to have a scan of my thyroid to check for cancer and nodules (all clear). He then sent me to Dr Chang. A wonderful DR but alas she has now moved to Melbourne and I have yet to see the new Doctor.
My T4s and T3 were way over.
The normal readings for THS are between .5 and 5.
Free T4 normal reading should be between 11.0 and 21.0
Free T3 normal reading should be between 3.1 and 6.0
I started out from the blood work at T4 56.1 and T3 24.6
My THS had gone to sleep at .01 and has yet to kick in and likely won’t for about another 3 months) The THS is the one that reads if you have to little or too much and tells your thyroid to give you more or none at all.. mine has gone to sleep as I had way too much
I was put on Carbimozole 6 @ 5mg) day 3 in the morning and three at nightto get the T4 and T3 back down to a normal range as quick as they could. A month later they were T4 21.6 and 7.6 . Still not in the normal range yet. A month later they were T4 .10 and T3 6.7. sill not there yet one month later T4 10.7 and T3 4.5. MY dosage is now at 4 tablet ( 20 mg per day) tablet a day in the morning only. (They are still watching the levels so they don’t send me to under active so it is monitored once a month) The advice given is to stay on the medication for 18 months as staying on it for this length of time as the best chance of going into remission. They have found that any time less it seems to come back. After that they will take me of the meds and see how we go, if it come back there are other option which include the Radioactive pill or Surgery. They are also keeping an eye on my liver as staying on the medication for long term may cause damage. Hence the other options.
They have also sent me to an Opthomologist for my eyes (who specialises in Graves), which are quite good just swollen and puffy bags , He keeps watch so there are no changes or damage but they are no too bad considering.. suggested Fish oil for the anti inflammitory (Bearing in mind my original trip to the doctor was my vanity (eyes).
Yesterday was my first melt down and cried for an hour when I found my hair has started falling out. It has been light shedding until recently but I have had a day off and cleaned my hair brushes and had a good look and found behind my ears there are bald patches. The straw that broke the camels back so to speak.!. I rang the Endo, remember she have moved to another city, they will put me in urgently if they get a cancellation. but they also rang my old Doctor who rang me at home, very surprised and said with a bit of luck it would grow back but there may be more to my auto immune disease and I could have alopecia areata. But as she is no longer my Doctor I will have to see the new endo, So now I am about to ring my local GP as I would like to do something before this gets any worse. Any tips from those of you who have lost hair please send them along, how long does it last
did you do anything to help it grow back… I was due to go on my first trip overseas in April, as I am crushed about the hair loss.
Funny thing was I also only started using Aspartame in my coffee about two years go . I stopped a couple of weeks ago when I saw some info of the net about food to avoid. The stress of loosing may hair still keeps me smoking..I have oder some ecigs from the net
Hello Carolyn,
When I was initially diagnosed, my TSH was .0010, within 3 months of taking methimazole (ATD), my TSH shot up to 54.22 and I was officially hypo. So with some med adjustments, and 9 months later, I am on a maintenance dose of 2.5mg methimazole every other day and I feel the best I have in years!
Don’t worry about your hair falling out, I went through the exact same thing. Your hair goes through growth and shed cycles, and any change in your thyroid levels will affect those cycles 3 months later. So if your thyroid was out of balance 3 months ago, your hair is just now reacting. I was very upset when I noticed extra hair in the shower drain and in my brushes, but then 3 months later, I noticed new growth along my hairline and in my part so I knew it was growing back. It takes just as long for your hair to grow back so try to be patient. My hair today is much fuller and longer than it was 3 or 4 months ago. Try to avoid using styling products, or applying any heat to your hair, which will only dry it out and cause breakage. Use a leave-in conditioner. I started using Wen products and my hair is shiny, healthy and bouncy.
Also, if you aren’t already, take a women’s multi-vitamin. Get your vitamin D and iron levels checked since thyroid disease can deplete you of these vital nutrients. I supplement my multi with extra iron and 2,000 of vitamin D and I think this may have helped with my hair growth.
And yes, stay away from Aspartame! I was eating a yogurt every morning, not realizing it had aspartame in it, and months later I started having symptoms of grave’s disease. It may just be a coincidence, but I don’t think so. I avoid anything with aspartame, it is poison and should be banned for human consumption!
Dianne
I forgot to add, I found the web site below when searching for the cause of my ‘Graves’ and there is a link between Aspartame and Graves
I have attached the link for those who wish to read it.
http://www.sweetpoison.com/aspartame-side-effects.html
Hi Carolyn, I’m sure aspartame causes people a lot of health problems especially if consumed regularly over a long period of time. But personally I’ve never touched the stuff so in my case Graves disease is unrelated to aspartame.
Hi Jenny, I’ve been reading articles by Dr. Brownstein and Dr Abraham in which they state that taking iodine for Graves disease normalises Free T3 and the storage hormone Free T4 but that TSH slightly increases to supply iodine to all the body’s tissues that are deficient. They said that it takes 6 months to a year for TSH to return to normal levels.
But Dr Brownstein wrote that hypothyroidism doesn’t occur. So I emailed Dr Brownstein (and tried to post on his blog) and Dr Abraham because my TSH was a lot higher than normal not just slightly higher and I had all the symptoms of hypothyroidism including muscle weakness, cold hands and feet and weight gain. Dr. Brownstein totally blanked me and wouldn’t allow my comments on his blog.
However Dr. Abraham was more helpful and very kindly recommended that I continued to take the lugols iodine and to start taking L-Tyrosine 500mg per day, Vitamin B-2 Riboflavin 100mg per day, and non-flush B-3 500mg per day. Actually I took niacin (B-3) which causes flushes but it made me feel even more weak as it can cause muscle weakness and lots of other symptoms besides. So I dropped the B-3 dose down to 100mg per day and then the three suplements started working. I now feel stronger each day and my hands and feet have warmed up so I’m happy.
Everyone is different so sometimes you need a little help and advice if you run into difficulties. In about 7 weeks time I will have another blood test and I’m hoping that my Free T3 and Free T4 levels will be normal then. I’ll post my results here.
I am hoping that they will be normal then too! I sent your story onto Dr. McIver (my endo) and he said that iodine is way too risky and dangerous and he doesn’t recommend it. Of course, he told me that once upon a time too.
It sounds like you have great awareness of your body and that you are good about listening to it, so that’s great.
Looking forward to your positive results!
Thanks Dianne and Tom,
I was lucky yesterday the Endo had a cancellation so I went to see my new Doctor (The other had moved interstate). He is very good !
He started all the question from scratch but thought my dose of Carbimoazole was a little too much for when my levels are. So he has dropped another 5 mg off and I now just take 15 mg every morning.
I am looking forward to getting down even further. He say the cause of the Graves is more likely to be stress related. As there is no stress in my home life he likely thinks it is work, but because I have been doing this job for so long it is hard to pin point the cause. Dianne thanks for the support on the hair. The doctor said yesterday that he didn’t think I would loose it all, it will still probably shed a little further but it will grow back. So I feel a little better now, I just wish there was something you could do to stop it falling out any further. I found a product called argan oil (from Morocco all natural product) There are hair products with this oil and it is fantastic for your hair (its is a dry oil so it gives you moisture but doesn’t leave an oily residue or weigh your hair down just rub it through and it will dry with your hair. Your hair feels really normal, has moisture and feels soft an silky) The local GP sent me in for a complete blood work to see what I may be missing in the way of vitamins and minerals.
Tom the Doctor agreed that is was likely a coincidence about the aspartame and is a strong believer that it is stress related but I won’t go back on it.
Good luck to you all
Carolyn, check into biotin to help prevent hair loss. I took prenatal vitamins for about a month to slow the hair loss, and it contained biotin. I had to stop because the prenatals were making me nauseous, now I just take a woman’s multi with biotin but the hair loss had already stopped. it does get better! Yay for you for having a good doctors visit!