Graves disease, radioactive iodine and prognosis

i was dx with Graves Disease (opposite of Hashimotos) when i was 20, before i was dx with D. i had radioactive iodine treatment and within the second year post treatment, my thyroid function went from blazing fast to slower. i had a bulging right eye which needed corrective surgery along with steroid treatment (prednisone). once my thyroid function leveled off, i was put on synthroid. i have had 2 flare-ups since, but i have been stable for over 30 years now.all i do is have regular thyroid panels done when blood is drawn (by my endo) and i just take one pill a day, and thats the end of it.

i was never teated for any antibodies. just treated when symptoms came on.
my prayers are with you and your family.

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Hey @daisymae, I would be interested in your experiences and whether you are happy with the decision to do radioactive iodine. I was diagnosed with Graves’ a little over a year and a half ago and was put on methimazole at that time. I was diagnosed due to symptoms, but had my thyroid antibodies (specific to Graves’, which are not the same antibodies that cause Hashimoto’s) tested to confirm the diagnosis. I just recently had those same antibodies re-checked to see whether I might be going into remission, as some people have the autoimmune attack stop after 12-18 months on methimazole. Turns out that’s not the case for me and my antibodies are still positive, so my body is still in full-on attack mode. My doctor said that at this point I can continue on medication if I want to (which does carry some risk of serious side effects and requires monitoring), or I can destroy my thyroid with radioactive iodine if I want to. If I do that, my thyroid will of course be unable to produce any thyroid hormone, so I’d need thyroid replacement medication for the rest of my life to prevent my levels from dropping extremely low. At the moment I’ve chosen to continue taking methimazole, but I do periodically have symptoms of hyperthyroidism (even though my thyroid levels are normal) and irritated eyes. My endocrinologist said that once the thyroid is gone the antibodies will remain but will have nothing left to attack, but it sounds like maybe this isn’t the case if things can still flare up after getting the treatment.

To go back to the original topic of this thread, I also wonder how far in advance of developing Graves’ the antibodies showed up. I had my thyroid levels checked yearly since childhood, but not antibody levels. I had a totally normal thyroid level in May and was in emergency with severe symptoms and totally abnormal thyroid levels in December. I had increasing symptoms for about a month prior to diagnosis. So it seemed to come on fairly fast for me, but given that Type 1 diabetes also seems to come on fairly fast but has antibodies present for years, that doesn’t necessarily mean anything.

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hi jen, i was so ill before the radio active iodine treatment. i looked like a bone with flesh draped over me. i could barely eat without throwing up. i sweat like i was living on the equator. and i had trouble catching my breath. i was unable to see out of my right eye, which made it difficult to see out of both eyes. i was in chronic pain from head to toe. and my emotions were all over the map as if i were going through menopause.

i was put on inderol/propraninol for my heart (which was pumping way too fast.( the doctors thought i might have a heart attack.) and i was put on Prednisone for my eye protrusion. (this does not agree with BGs btw; and everything tends to be super high and unmanageable.) the prednisone made me feel even crazier and manic and hyper) i felt like death.

when i got the Radio Active Iodine treatment my life changed. it took a year before i really started to feel a physical difference. i was able to begin eating a regular diet again within months, but by the 10th month, i started to feel fine. (i also have to add that i was receiving acupuncture at the same time, and i totally endorse that 100% ) i was slowly able to put some weight on, and the pain was gone. (i did have to be fitted for a special kind of eye glasses with prisms in them in order to see, though) i was able to discontinue all of the other meds, and i started taking a very small dosage of Synthroid. my endo (not the imbecile that i have now) had only given me a modest dose of the iodine treatment; he did not “kill” the entire thyroid, so i still had some remaining functioning thyroid. i think this was the best part of it, b/c i was not left with nothing. my body was able to adapt. i could be wrong about this notion, but to this day, i am able to be healthy on a very low dose of synthroid (especially when i compare it to the other women’s dosages that i know of).

i have had 2 bouts wherein i went out of a remissive period and had to change both my synthroid dosage and a change in my eye glasses, but they were short-lived (about a year for each one), but since then i have had 2 corrective eye surgeries and i have been 100%.

i can’t begin to tell you how happy i have been with the results of the treatment. i would recommend it to anyone suffering with Graves Disease.
it is now the easiest part of my life to manage; i do nothing except take 1 pill a day, and everything is taken care of.

if you have any more questions, don’t hesitate to ask.

Daisy Mae

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Thanks so much for that information! Did you ever take methimazole? What you describe at the beginning is pretty much how I was when I was diagnosed (well, except I wasn’t super skinny because I’m overweight to start with). I could barely function. I took propranolol for a while at first, but then methimazole brought my thyroid under control, so I was able to stop the propranolol, though I did have to go back on it for a bit last summer. I’m so glad that the treatment worked so well for you. It sounded kind of scary when my endocrinologist was describing it, but it sounds like it’s not really that bad!

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it really wasnt so bad. the radio active iodine treament was the least of it. the symptoms were much much worse and much more uncomfortable. the iodine treatment was just like a shot glass filled with liquid and i just drank it and then had to take some tracer drugs and then go under a big machine which lit up my thyroid gland and could monitor what part of my thyroid was responding to the radioactive iodine. it was so long ago that i barely remember it. i just know that i went to the doc’s office about once a month to get scanned and that the pain and the eye problems were the worst part. once the thyroid had shrunk enough, i was able to have all the corrective work i needed. the eye surgury was an in and out of the hospital thing. i dont think that the surgery lasted more than an hour and i was able to go right home the same day.

i havent had one single problem since 1994. my dosage of synthroid has changed over time, but barely noticeable.