[joe_182]

#1019921

Hi, my name is Joe and I am a 25 year old male. I was diagnosed with graves disease about a year ago and I wouldn’t have known to be tested because my symptoms are relatively mild compared to some of the thigns I have read about this disease. I was being tested thinking I had Hypothyroid disease, specifically Hashimoto’s thyroiditis which my dad and sister have. I was surprised when I found out I had Graves disease. My initial TSH level was.004 and my eyes were starting to bulge out due to thyroid eye disease. Once I got through the thyroid uptake scan and everything and found an endocronlogist, I was prescribed with PTU. I had to see a separate opthomoligist specializing in thyroid eye disease who gave me a steroid treatment to help with the inflamation behind the eyes.

That is just some background, but here is the weird part. My endocronologist prescribed me with PTU, but told me I couldn’t tale the 1 a day pill because there were alcoline phosphates in my blood, which could either come from the liver or bones and I should take these and get my blood work taken again in a couple months to see where its coming from. The reasoning was if it was coming from the liver the 1 a day PTU pill wouldve been too much for it. I took the PTU for about a month and a half but my prescription and 2 refills ran out fast taking 3 a day so I called my endocronologist requesting a fax for another prescription, she said to stay off of the PTU for the week and get my blood retested. When the results of my bloodwork came in my TSH level was at 4%, well within the normal range, also the alkaline phosphates were gone so she told me I was fine, bt to keep an eye on it, get my blood work done again in a couple months. Foolishly, I decided to pretend like I never had Graves Disease and never got my blood retested. I never really have the key symptoms of the disease except an impossible time sleeping at night, which makes me tired a lot. About a month ago, though, I started getting crazy heart palpitations that would last sometimes for over an hour. They are so strong, I thought I was having a heart attack the first time and it even woke me up while I was asleep once. After that went and got my bloodwork and saw my endocronologist and I was sure my TSH would be way back down there, but it was at .44% only .06 away from the normal range i guess but a ways from the 4.0% I had last February. Anyways, I’m supposed to get my blood work done again in the next couple weeks and my endochronologist thinks that it is coming back, but it will depend on the test, she said sometimes Graves Disease comes and goes.

I’m trying to figure this out cuz I’m under the impression its caused by these third generation T-cells that don’t die when they should and start acting irresponsibly, like attacking the thyroid. Some of these antibodies damage the thyroid like in Hashimoto’s Thyroiditis, while our Graves Disease ones just annoy it enough to overproduce. I would think it would have to be a continous cycle though, but maybe not. I don’t know I’ve read as much as I can on this and some people talk about special diets, low in iodine, without preservatives and processed foods that can treat grave’s Disease. I mentioned this to my Endocronoligist, but she said that these reports were false and the antibodies that cause Graves Disease are gentic and can be cyclical and the only thing that really makes things worse is an extreme amount of iodine, but still that has to do with thyroid production and not the antibodies themselves. I’m not entirely convinced though, it seems to me that if 3rd generation T cells should die, but don’t sometimes causing graves disease, but in the same person, they do die sometimes, putting Grave’s Disease into remission there should be some cause for this. And although, my mom is convinced going off the PTU caused it to come back, I’m pretty positive the PTU just inhibits the thyroids production and has nothing to do with the actual antibodies that cause graves disease…ugh I’m rambling, was really just wondering if anyone here had the same experience with the disease coming and going with relatively minor symptoms and if anyone has links to scientific research relating to Graves Disease, I feel like there might be a cause to this other than genetics and a solution other than destroying the thyroid gland with radioactive iodine. Any feedback is much appreciated

[Bobbi]

#1075038

I noticed a comment in the last part of your post, Joe, to which I will respond: the only thing that any of our treatments do is help to control levels of thyroid hormone in the body. None of the treatment options work on the antibodies that are the cause of the disease.

So, the PTU does not inhibit the production of antithyroid antibodies. PTU does have a potential adverse side effect of lowering the white blood cell count, which is a very dangerous side effect. But the antibodies are not involved. While on PTU you should expect to have normal levels of thyroid hormone. That is what the drug is designed to do: interfere enough with the production of thyroid hormone just enough to control our levels in the normal zone.

As for a "cyclical" case of Graves — antibody levels can rise or fall for no well-understood reason. When antibody levels fall, we can be symptom free for a while. But they will inevitably rise again at some point in time, so we need to be vigilant. So, the disease isn’t "cyclical" but it can wax and wane. If you have Graves, it is forever. It is treatable, but it is definitely not something you should ignore, or pretend isn’t there.

[James]

#1075039

joe_182 wrote: . . . Some of these antibodies damage the thyroid like in Hashimoto’s Thyroiditis, while our Graves Disease ones just annoy it enough to overproduce. I would think it would have to be a continous cycle though, but maybe not. I don’t know I’ve read as much as I can on this and some people talk about special diets, low in iodine, without preservatives and processed foods that can treat grave’s Disease. I mentioned this to my Endocronoligist, but she said that these reports were false and the antibodies that cause Graves Disease are gentic and can be cyclical and the only thing that really makes things worse is an extreme amount of iodine, but still that has to do with thyroid production and not the antibodies themselves. . . . .

Your endocrinologist is 100% correct in saying that it is false to assume that you can “treat” the thyroid (GD) with special diets, eating low iodine foods and avoiding processed foods. There are only three options that are medically acceptable to “treat” GD. Anyone who makes claims that a special diet can someone treat or cure your condition should be avoided at all cost. While being treated with ANY of the options to regularize your Hyper condition, it doesn’t do any harm to avoid iodine rich foods as these may exacerbate the problem. So to that extent you are correct. Iodine rich diets would be akin to throwing fuel into a fire as my endocrinologist once put it. Now with that being said, there is a lot to be said about just eating right to hasten healing and getting your body healthy and back into balance. I found that making some changes to my diet (like avoiding processed foods and eating low iodine) only helped to hasten healing and get my immune system back on track, but NOT without treating the hyper condition with a medically supervised and approved method first (one of the main three options). I was corresponding with one of the facilitators who mentioned that one of the past conference speakers spoke of correlations between environment and the immune system. This is one area of great interest to me, so I’ll see what I can find out and hopefully get them to share this information.

Take care,

James

[npatterson]

#1075040

Joe,
You have gotten two good responses. I’ll add my two cents: Eat healthy…it’s as simple as that. The other is that your are correct about PTU – that it inhibits production (Tapezole inhibits the conversion). The antibodies can and will be cyclical. There is a great deal of research being done. Generally, if a person cannot be off the anti-thyroid drugs without the Graves’ coming back (your heart symptoms are very inportant) you will eventually be faced with one of the remaining two treatments.
My other observation is that you are also having eye symptoms. The may occur at the same time, or separately from, your thyroid symptoms. You have a specialist, so stay in touch with them, as will as your endocrinologist. Keep your blood tests up-to-date!

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