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  • Anonymous
      Post count: 93172

      hi, I was diagnosed with graves disease in 1993.
      I was first put on PTU, couldn’t tolerate it, then I took tapazol and
      went into remission for about a year and a half.
      The last six months I have been on tapazol again and considering
      radioactive iodine therapy.
      I would like to hear from anyone who has tried this,
      please tell me the benifits and negative aspects of this.
      So far a few certain people have warned me agaist it, but they
      gave me no concrete reasons..
      Please help me!

        Post count: 93172

        Hi, Gg. I won’t give you advice one way or the other. I’m not at all sure any of us should tell someone else what to do with this decision. But I’ve gone the RAI route, so I can tell you about my experience with it, and ask you at least one question. These people who are advising you against it — I assume because you mention that there are no concrete reasons given, that these people are not doctors. But if they ARE doctors, then you deserve to have good and concrete reasons given. If they are NOT doctors, well, I think they are perhaps not being terribly constructive. We all have fears and personal priorities when it comes to deciding treatment, and it’s quite hard enough to decide for yourself, without trying to decide for others, as well. ( = sounds of Bobbi falling off the soapbox.)

        I was diagnosed with Graves last summer, tried PTU and did not tolerate it well, and ultimately decided to have RAI. I had it the week before Thanksgiving, 1996. By Christmas, when I had my first post-RAI bloodwork done I had gone into hypo territory — mildly. I felt GOOD. I didn’t even know that I was now, technically, hypo. By New Years my endo had me on thyroid replacement hormone. Apparently, that first dose was not sufficient, because at the end of January my endo decided to check me again and found I was way more hypo than I had been before, and increased my daily dose. I have had no significant problems so far (and madly knocking wood here) with this treatment choice. There were no side effects to the RAI itself, other than a very, very mild soreness in the throat area, and about a week of increased hyper symptoms immediately after the treatment. As far as hypo is concerned, there are some problems with it, which I, personally, consider fairly minor in comparison to the problems that I had hyperthyroid. I have experienced some minor hair loss, my face, especially the eyes, got all puffed up (think tangerines, here) and turned purple (under the eyes) requiring the use of industrial strength cosmetics. I developed the pre-tibial myxedema, which is the skin problem on the shins which accompanies hypo (although the information that the doctor gave me, also suggests this can come from the hyper state as well.) That’s being treated with cortisone creams which are helping. And I’ve had intermittent bouts with muscle-cramping in my legs, which sometimes is strong enough to interfere with my sleep. But, on the other hand, I no longer feel sick, I have way more energy than before, and for me, these symptoms are totally tolerable for the moment. I cannot yet run marathons but things are still improving.

        I think I am lucky inasmuch as I have an endo who pays attention to the details. SHE was the one who took one look at me the end of January, and decided a new blood test was a good idea (I had gone to her for advice on the myxedema, and was not feeling badly on that initial low dose of hormone replacement). So she is accessible, and on top of things, so far. That is a big help. Anyway, I am thus far quite pleased with the results of RAI for me. It is not a magic pill. It doesn’t immediately resolve all the issues associated with the disease, but it has very effectively taken me out of the hyper range, and I hope for good. There are folks who have to do the RAI more than once. I don’t know why that is. Perhaps your doctor could discuss this with you. The numbers that I’ve heard thrown about are that RAI is effective in eliminating hyperthyroidism in about 90% of the cases. Most folks do fine on the thyroid replacement, as well. There is, however, a small percentage that don’t. Which is why I think we all have to make our choices for ourselves.

        If you want to discuss this more, you can email me. Please, though, indicate in the subject line the topic here. I tend to delete, without reading, email from unknown sources (I get LOTS of funky junk mail). I wish you luck with your decision — I know how hard it is to decide.


          Post count: 93172

          I had RAI on January 20 after spending 6 months in the euthyroid stage after all medications were stopped. I have experienced two short bouts of hyper since. One in the first week and the second in the sixth week. I guess I’m lucky, my PCP is new to the country and new to the profession. He is checking my blood every two weeks. He wants to catch it before it drops too far. He was hoping to take me off PTU last week but T4 is still high. I have never had eye problems except after The uptake tests and now after RAI. However they are not severe, more irritating than anything else since none of my glasses either pre-hyper or hyper seem to work. I am using OTC eye drops and advil seems to help. I agree with Bobbi you must make the decision yourself with advice from your doctor.

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