Graves' Disease - My Story of Hyperthyroidism

So I went to my doctor. Ironically, I was leaving January 31 for Europe for 3 months. Go to my Graves' Disease Links Page to find out more about Graves': Graves' Disease Links Page

I am still in the process of receiving all my labwork over the past six years and will post it when I get an opportunity. In the meantime, I thought I would share some communication I have had. I have a gut feeling not to do RAI.

My thyroid started out as the size of a baseball and has 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 that happen. I am on a Graves' Disease list serve and I learned the following the other day 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 it that you are supposed to believe that it will not affect any other organs in your body? I mean the thyroid IS connected to other organs.

Elaine Moore, the author of Graves' Disease (book), told me the following:

"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:

--- steiff1001@aol.com 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: steiff1001@aol.com 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 GD 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...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 destory things you will never be able to repair." And well, I haven't had children yet, so that scares the heck out of me.

I think all of us are different and all Graves' 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 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' 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 bed side 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 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 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. First of all, 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. Anyway, he was completely uninterested in the material that I had brought and suggested I get a thyroid scan when I had told him that I didn't want any radioactive iodine in my body! A thyroid scan is a small amount of radioactive iodine. 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 mean, how ignorant can you be? You seriously don't even look at something? Do you really think you've learned all that you can learn? I mean, 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. Bhattacharya is 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--so he would just like to eliminate those patients by advising them to do RAI!

Oh and to top things off, I told the docs at Mayo about how Bhattacharya told me that I had to do a thyroid scan in order to figure out if it was Graves....and the Mayo doctors told me that was crazy and they had never heard of such a thing. It is really scarey how someone can be a doctor and 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. I see him next week and then see Dr. McIver the same day. On April 3, 2008 I have blood tests starting at 6:45am and then I see Dr. Miles at 10:45am. I then see Dr. Iver the same day but at 2:45pm in the Division of Endocrinology, Thyroid Clinic Consult. On Friday, April 4, they have me going to the Pulmonary Function Laboratory for the Resting Energy Expenditure. That should be interesting!

My current insurance, Coventry, is not accepted there, so I am sure that the bills will be outrageous, but if it ends up leading me down a different path than the one I am currently on, then I will appreciate it.

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) 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 the 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 got this 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 Grave’s is concerned, McIver thinks I have had Grave’s 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 Grave’s, in spite of the size of my goiter. So he thinks that my body has been compensating for this overactive thyroid for quite some time. 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 Grave’s 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 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!

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 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 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 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.