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  • Anonymous
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    Post count: 93172

    Why did I have RAI? Probably a whole constellation of reasons. For one thing, I have the example of my mother, who had RAI over twenty years ago. It made her well, and relatively quickly. Secondly, I didn’t like the “odds” given of going on remission with PTU/Tapazole. Even the most optimistic estimates of remission are 50%. And there is no way to predict who are the likely candidates for remission. So that meant, to me, that there was at the very best, an even chance that I would not go into remission. If I did go into remission, how long would it last? Nobody could tell me. Add to that the fact that in the United States, the remission rate seems to be much lower than in Europe. Here, all of the sources tell you 20% remission. Now, some folks explain this by saying that American doctors simply don’t use the antithyroid meds in the same numbers as they do in Europe. That may play into it. There also might be environmental/dietary/etc. reasons why remission rates are cited as lower here. Additionally, I approach systemic drugs with the same caution that I bring to xrays or any other treatment. I do not like taking drugs where there are potentially bad side effects, especially if I’m going to have to be on those drugs for an extensive period of time. (Again, nobody could tell me how long the drug treatment would last.) So, I’m very wary of drug treatment. Everything I read suggested that synthroid and other synthetic T4 drugs (which I do have to take now) are significantly safer than the antithryoid meds in the long term. Another reason: I have some friends who are doctors. They had absolutely no stake in selling me one treatment over another. Without exception, each and every one of them stated that RAI was “the only way to go”. I found that interesting, if not compelling. But one of them has a sister with Graves, and had urged HER to go for RAI instead of the drug therapy. I must say, though, that I still wanted to give the antithyroid meds a try. But I felt terrible while on them, even when bloodwork showed that I was in the “normal” range. My brain would NOT function. I still had hyper symptoms from time to time. Then, when I discovered a rash one day and had to stop the PTU in case it was an allergic reaction, I decided to stop fooling around and go for RAI. Knocking wood and fingers crossed here, I am not sorry I made this choice. I feel healthy again. My brain works. My emotions are back in synch with reality. I hope this keeps up!

    I wish you luck.

    Bobbi

    Anonymous
    Participant
    Post count: 93172

    I’m happy to hear something positive about treatment of GD, specifically RAI. Being recently diagnosed I don’t know much about it. My oncologist got my test results and sent me to an endo. Now I’m taking 300 mg. PTU daily and will be evaluated for RAI in 6 weeks. This may sound crazy but I thought that was all there is to it, 6 weeks PTU then RAI and bingo back in business. (INCLUDING MY EYES)

    After reading some of the comments on this BB I decided to call the Opthamologist and not wait for my doctor to recommend an appointment. Did I understand someone to say that even if your thyroid levels stablize the eyes can continue to get worse?

    Thanks for the information!!

    Anonymous
    Participant
    Post count: 93172

    Linda, the thyroid levels don’t necessarily have anything to do with the eye condition. I have the eye trouble without detectable thyroid problems. (so far!)

    Bruce

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