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  • Anonymous
      Post count: 93172

      Welcome, Donna. . .

      Glad to hear you’re learning all you can. Tapazole is not the only anti-thyroid drug you can try. Good idea to get the second opinion in a case like yours. It seems a little premature to be considering RAI, given the facts you presented. Normal thyroid uptake and scan? I don’t understand the diagnosis of GD, but I’m not a doctor.
      Let us know when you find out more.

      Dianne N

      Anonymous
        Post count: 93172

        Hi everyone! I was recently diagnosed with Graves Disease and have been doing lots of reading and I’m a bit confused. Basically, my T3 and T4 are high normal and my TSH is low. I don’t know the exact numbers, I will get them when I see my endo. My thyroid uptake and scan were normal. The endo has diagnosed “mild” Graves Disease. I tried Tapazole, but broke out in hives. I’m concerned about having RAI without something more definitive than a low TSH, although I do have some of the other symptoms I’ve read about (chronic fatigue and mental fogginess). Has anyone else had any experiences this? Should I have a second opinion?

        Anonymous
          Post count: 93172

          Like the other response, I’M NO DOCTOR, but it seems a bit rushed to
          consider RAI if your condition is just mild. Also, like the other
          response, my understanding that a normal uptake scan is a little strange.
          My wife’s endo suggested that the higher the uptake scan, the more certain
          the condition is due to Graves. Does it stand to reason that a low scan
          is at least somewhat more likely to be due to other factors? There
          certainly are other causes of hyperthyroid activity (post partum, thyroid
          inflammation, benign tumors, etc.). If you don’t seek a second opinion,
          ask a lot of questions of your doc (write them all down first so you
          don’t forget when your under the gun) and even challenge your doc to
          suggest other options/causes or ask what the chances are that it is
          something else. This is the approach my wife has taken and we feel pretty
          comfortable with the responses we’ve gotten so far. This bulleting board
          helps a lot, plus all other Graves and Thyroid info on the internet.
          Good luck!

          Anonymous
            Post count: 93172

            In May 2002 I was diagnosed hyperthyroid. Further tests reveal it is most likely Graves disease. I have made appointments with two endos, but don’t know if I should cancel one. They are so busy, my first appointment is in October and the second in November.

            My internist prescribed 15 mgm of Methimazole, but it wasn’t sufficient. I am currently taking 30 mgm of Methimazole, and will get another blood test next week. Unfortunately, this dosage has caused me to have extremely painful stomach acid. I thought I was either having a heart attack or was suffering from food poisoning. I now have to take 40 mg of Protonix to combat the acid, as Rolaids and Tums were useless.

            From whatI have read so far, it appears that I have 1/3 chance of the disease going into remission, 1/3 chance of remaining the same, and 1/3 chance of the disease getting worse. Is this priot to or after RAI?

            Anonymous
              Post count: 93172

              Hello & welcome! You will see that most of us recommend starting with some books from the experts. If that is not fast enough, you can get the general information from this & other thyroid websites. I am on methimozole too, but I am all the way up to 40mg/day. In short, you have 3 options: 1.) anti-thyroid drugs (ATD’s) like you are taking now, if you do not have any side effects or complications, you can take these for quite a while and you will either go into remission or you will take them until your thyroid eventually burns out. 2.) radio-active iodine (RAI) which will kill off your thyroid and you will have to take artificial thyroid hormones the rest of your life. 3.) surgery to remove the thyroid and you will also have to take the artificial thyroid hormones with this option. The only chance of remission that I’ve found is from taking ATD’s long term (1-3 years) or if the RAI doesn’t completely kill off your thyroid the first time around and you happen to go into a euthyroid state. The best odds I’ve heard are about 30% for remission and it’s a long road. I chose the ATD’s and after only 4 months now, I’m already getting impatient. It seems you have to stick with it for it to work. On the other hand, I have seen several posts that doing RAI takes the long road to getting normal on the synthetic hormones too. I hope this gives you some preliminary info. Once you start reading some books, articles, and visiting your endo you will have a better idea what treatment is best for you. Best wishes, Marcy

              Anonymous
                Post count: 93172

                From my experience and what I understand, if you are taking anti-thyroid meds, you have a chance to go into remission, a chance to feel better, but not go into remission, and a chance to get worse. So, I believe your 1/3, 1/3, 1/3 is restricted to antithyroid meds.

                Left untreated, your disease will get worse, make no mistake about that.(Yes, there are a very few people who go into remission spontaneously, but unless you’re feeling like you’ll win the lottery any time soon, it’s probably not a likely occurrence.)

                With RAI or surgery, your disease will get better. You’ll no longer be hyperthyroid. You’ll likely become hypothyroid and have to take replacement meds, but that’s not nearly as dangerous to your body as being hyperthyroid.

                Hope that helps a bit,
                Melinda

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