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  • Anonymous
      Post count: 93172

      My endo is British and got his medical training there.
      I went to see him today for a short visit to see
      how my Tapazole is doing. I have to go back in
      6 weeks to have my antibody level tested.

      Anyway, he said (generalizing, that is)
      that the way that doctors in the
      US approach treatment of Graves’ is to nuke the
      thyroid right away or only put people on ATD’s for
      a short time before doing it. The approach in
      Europe is to give ATD’s a 2 year timeframe in which
      to work. If they don’t work after that, then the
      RAI is done. He said things seem to be changing
      now and that it is obviously a generalization, but
      many American collegues are still jumping the gun
      on RAI. I tend to agree with him after reading up
      on treatment for Graves’. I am glad he is my
      doctor…I want to avoid RAI if at all possible.

      DO you think that this difference in the way treatment
      is approached is real?? Is there anyone on this
      list from Europe?


        Post count: 93172

        According to my doctor, there is also a difference between treatment on the East Coast and the West Coast. Doctors on the East Coast tend to be more conservative and give lower doses of RAI. While on the West Coast they tend to give higher doses, kill of the thyroid and then treat the hypothyroidism.

        Luckily, I live in New York and I only had the lowest dose of RAI. IT’s been 2 years and my blood levels have been the same for the past 1 1/2 years. My T3, T4 and T7 are all in the middle of the acceptable ranges. Only my TSH is still slightly low. FOr this I take a beta blocker every day.

        I tried both PTU and Tapazole first. However, I had allergic reactions to both.

          Post count: 93172

          I have been newly diagnosed and my doctor says there will be options for treatment, such as anti-thyroid pills, radioactive iodine or surgery. What have most of you used as treatment, and what seems to be the most effective? I have heard that rai is hard on older folks. I am 65 years old.

            Post count: 93172

            I am taking PTU but it has been a real roller coaster of emotions with depression (which I was not aware was a symptom) and other symptoms in trying to get on the correct dosage. My endocrinologist said that they rarely do surgery anymore unless there is a high risk of cancer. I only had slight enlargement of the thyroid on one side and did not have a noticeable goiter or eye involvement, so he gave me the choice of the radioation treatment or antithyroid medication and I chose the latter. He did say that the American Medical Association only recommends being on it for about a year since there are other risks such as anemia, liver problems, etc. I am 47 years old and do not know if I am menopausal since I had all the symptoms of it until I started the medication. Did your doctor confirm your diagnosis with just blood tests or did you have an uptake and thyroid scan too?

              Post count: 93172

              The method of treatment recommendations can vary from one individual to the next based on many factors, not just age. I would recommend that you talk carefully with your own doctor — the medical professional who knows you and your physical condition the best. If your doctor has told you that RAI is riskier than another treatment, for YOU, then take it seriously. But if you got that information from people online it is not as important for you to listen. People online are amateurs, not medical professionals. And while some of us have studied the situation very carefully, we still do not have the expertise of doctors — especially doctors who have SEEN you, personally.

              The NGDF has a list of good books that can be used as reference materials for you. They are listed on the main NGDF website. Reading the chapters that pertain to hyperthyroidism and the treatment options can provide you with good GENERAL information. It can help you to understand your doctor’s recommendations better.

              Bobbi — NGDF Online Facilitator

                Post count: 93172

                Thank you, Bobbi — I appreciate your comments. The internet says that only 1% of the population has this disease, yet it seems that so many people have it.

                  Post count: 93172

                  Reply to Apricot — I had a blood test, and a thyroid profile (whatever that means). At present, Dr. has put me on a beta blocker to slow my heart rate (it is too fast), and I am supposed to go in Tuesday to decide upon the type of treatment. I know nothing about this, so am very concerned. I also am wondering if I should seek an endocrinologist. I have lost about 15 lbs. (but I was dieting), and had all the symptoms, but I blamed those symptoms on going off the hormone, Prempro…. we never know when it could be something else. Thanks for your reply. It helps just talking about this with someone else who has the disease. It seems that there are many who have it, yet the internet says only 1% of the population.

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