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  • Anonymous
      Post count: 93172

      Pat,

      I opted for PTU treatment and after a year of medication my Graves’ disease went into remission. The doctor tells me it might not stay in remission but to me it is worth a try. If my symptoms return, I will have to go with RAI. It is hard to decide what to do. It’s entirely up to the individual. This is what worked for me. I hope it helped you. Have a MERRY CHRISTMAS!

      Anonymous
        Post count: 93172

        I have just been diagnosed with Graves Disease and am having a terrible time deciding the type of treatment. I really don’t have any symptoms to speak of, but my doctor recommends that I treat it. The RAI scares me in that it is so permanent. I’m leaning toward the drug therapy, but understand it may not cure it. Does anyone have any experiences that could help me with my decision? Thanks. Pat

        Anonymous
          Post count: 93172

          My own opinion regarding the questions you asked:

          Neither anti-thyroid meds nor RAI “cure” Graves. Graves is the autoimmune problem we have — i.e. the production of a specific antibody, called Thyroid Stimulating Antibody (TSA). None of the treatments are designed to eliminate this antibody.

          The RAI and antithyroid meds are treatments of the hypothyroidism that is caused by TSA in many people. Hyperthyroidism must be treated, because it can be very damaging to your overall health if left untreated. The anti-thyroid meds bring about “remission” in some cases. Remission is not “cure”. It means a temporary (and this could be years) abatement of the hyperthyroidism. Nowhere in my research did I come up with numbers that indicated how long the remissions typically last. If the data is out there, I didn’t find it. So what that meant to me was that I could take the anti-thyroid meds and be relatively certain that at some point down the line I would once again become hyperthyroid. Given my age (52), and how sick I’ve been due to the hyperthyroidism, this was not an appealing prospect. RAI, when given in doses to eliminate the thyroid, “cures” hyperthyroidism, to the extent that the only way you can become hyperthyroid again is to take too much synthetic thyroid hormone. (If the thyroid isn’t there, it cannot start churning out too much thyroid hormone.) Sometimes doctors do not, deliberately, give sufficient RAI to destroy the thyroid. They try to give enough to damage part of the thyroid, but not all of it, to try to achieve a euthyroid (normal hormone production). When this is done, some folks find they have a reoccurance of elevated levels of thyroid hormone at some point in the future, and may need another RAI treatment. It is important for you to find out what YOUR doctor is trying to do, when you are making your decision about RAI.

          There are plusses and minuses to both hyperthyroid treatments. Only you can decide which one fits your personality and lifestyle, etc. the best. But make sure that you are basing your decision on the best information you can find. Ask questions of professionals: doctors and pharmacologists. There are books available on the subject at libraries and bookstores, and through the American Thyroid Association. If you are not at this point being made very ill by the problem, you can give yourself time to read up and evaluate your options without putting yourself under pressure to make a hasty decision. But I would hasten to add, you really don’t want hyperthyroidism to make you ill. It’s nasty when it does.

          I hope this helps. Good luck.

          Bobbi

          Anonymous
            Post count: 93172

            Hi Pat,

            Welcome to the BB, but so sorry you are here!

            All of us have struggled with what you are facing now – RAI or meds.
            For those that were allowed to choose their own path, we each struggled
            with the options. Please read as many of the past posts as you can so
            you can see results. Remember while you are reading – what you see
            here falls into two classes – those of us who are fairly new to the
            disease and those who fall into the 10% for whom GD is an ongoing
            battle. Do your research and make the choice that makes sense for you.

            I’m 47 years old with grown and almost-grown children so child-bearing
            didn’t come into my decision. My choice was PTU. I was diagnosed
            very quickly and wasn’t nearly as sick as a lot of people get, so I’m
            hoping that will weigh in my favor for remission – although my endo
            says there is NO research to support that hope. I’m hoping for
            returning to normal for as long as I can get it!!

            I’ve been on PTU for 8 weeks now and feel pretty good. The tremors,
            rapid heart, water retention, and wild mood swings are gone. What
            remains is the fatigue – and that is starting to get better. I’ve had
            better results than some others here.

            Please take your spouse or SO (or whoever will be with you through this)
            with you when you see the doctor again. They need to understand what
            is happening so they can support you. And you WILL need lots of
            support since GD does strange things to your body and mind.

            Best of luck in whatever you choose and keep us posted!

            DonnaN
            need lots of support

            Anonymous
              Post count: 93172

              Pat,You have to decide for yourself what sound right, but I’ll tell you my story. I had RAI not being told exactly what the drug treatment was (I thought you had to be on drugs the rest of your life, didn’t know remission was a possibility). If I had had all the info, I think I would have gone for drug. My sister went the drug route and has been in remission for years. Altho hearing people’s symptoms on drugs on this BB makes me less ticked off about my decision. I also think my thyroid was totally zapped, and now know you don’t have to kill the whole thing – I wish I would have just killed part of it. I think the thyroid does alot of things for the body that aren’t attributed to it and that we don’t know about. It bothers me that mine is gone. But having said that – I didn’t have any real problems after doing the RAI, felt better. Just have my hair falling out (just!?). Please ask your doc what all side effects are for each. I was told there were absolutely none with RAI and now I don’t believe that’s the case. Good LuckKarenG

              Anonymous
                Post count: 93172

                Dear Pat, What to do indeed? Well I have been taking tapazole for 6
                weeks. I feel so much better. I got good blood results at my 3 week
                check. For example my free t3 had been 2510 with the normal range being
                210-440. Yep that is high. 3 weeks on only 10mg of tapazole and now
                the free T3 is 799. I spoke with one woman who has used tapazole off
                and on for years with no ill effects. If you can take it, you could
                always do RAI later. I have talked to people who do RAI and seem to be
                okay. If you read this board, you see that lots of them are not
                okay yet. My endo says that in other countries the drugs are more
                frequently used. So remission is a real possibility. Are your eyes
                bothering you at all? That might be a reason to steer away from RAI.
                Well, good luck to you… after this round of bad luck, joining this
                elite group of nice people with graves. Let us know what you chose and how you do. Jeannette

                Anonymous
                  Post count: 93172

                  I am 28 years old and was diagnosed with GD in April of ’96. I have been on Tapazole since then. I find out in just 4 more months if I’m in remission on not. My biggest conern, of course, is what is I don’t go into remission? My doctor feels very confident that I will, but he really doesn’t know does he? I look forward to someday having a family, so I have made a decision to have my thyroid removed if I don’t go into remission. Can anyone give me some information on the surgery and what I can expect? I have overall been okay with having GD, not that I had much of a choice. I have a lot of support in my life through family and friends, but that hasn’t always made it easy. I have been overweight my entire life and I blamed my disease on my weight. That of course, is not true. But because of the Tapazole, I gained more weight. That was the most diffacult part. I can happily say that I have done what I never expected I would with this disease, I have lost 23 pounds in the last 11 weeks. My doctor felt I needed to do something about my weight gain instead of dwelling on it and he was right. I look foward to hearing for anyone, I don’t know anyone else with GD.

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