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  • Anonymous
      Post count: 93172

      I am on a fact finding mission and would like to get some information. I was diagnosed with Graves disease in February of 1996. I had radioactive iodine treatment in March of 1996 and started taking Levoxyl in June of 1996. I experienced many problems, but after a while started adjusting to the meds. I was seeing an endocrinologist, but he moved so my Primary Care physician began treating me. In June of this year she decided she wanted to see how much thyroid gland I still had left so she asked me to get a thyroid scan. Problem: In order to get an accurate scan, according to Nuclear Medicine, I had to be off my hormone for 30 days. My MD told me to go ahead and quit taking the hormone. On July 23, 1997, I had the scan – it came up that I had virtually no thyroid left. In the meantime, I had began to experience some sluggishness, extreme fatigue, weight gain. On July 28, I called my MD and asked if I could go back on my meds. She said fine…however, quite by accident, I had an appt. with Occupational Health where I work and my blood pressure was checked. It was 150/100. I am only 32 years old and have NO prior history of blood pressure problems.

      My blood pressure has been from 198/147 ( I was taken to the hospital) to 132/86. Right now it is about 145/100. My doctor seems to think that the reason my BP is so high is because my TSH is high. On Aug 3, 1997 they did a blood test and my TSH was 84.94 – which as you know is 79 points higher than it should be.

      My MD has not referred me to an endocrinologist yet, she says once we get the TSH down, my BP should come down.

      Right now I am feeling fine – a little tired. Sometimes I have mood swings – but I experienced them before when I first began the drug therapy. Aside from worrying about the high BP, I feel pretty good.

      Anyone have any advice? Any words of wisdom?

      Anonymous
        Post count: 93172

        I just scheduled an appointment for a radioactive iodine uptake exam
        in two weeks (they said they have to wait three weeks until the shellfish
        and seaweed clear). What can I expect from this exam? I am still reeling
        from my blood work which detailed suppresssed TSH and elevated T3 and T4.
        If the exam comes back and confirms GD like I suspect, what’s my next move?
        Do men get this too? Does anybody know a hotshot endo in LA (at UCLA or
        Cedars preferably)?
        Thanks for the BB
        Rik

        Anonymous
          Post count: 93172

          Hi, Rik:

          Sure men get Graves’ too — but it’s rarer. You may be in the “elite”. ; ) Anyway, George Bush has Graves — along with a few other guys who are on the board, here. Welcome.

          The thyroid scan involves swallowing a pill containing a measured amount of radioactive iodine (I think it’s I-128, as opposed to the I-131 that is given for treatment of Graves). After a set period of time, you go in and sit in front of a little tube for a few minutes, which measures how much of the radioactive iodine has made it’s way to your thyroid in that amount of time (it’s often 24 hours, give or take). I believe the normal range for uptake is 5% to 35%, and anything above that is an indication that your thyroid is over-active — but ask the nurse/tech who gives you the pill. After that, your thyroid will be scanned — this takes a bit longer, lying still on a table, while a machine moves around getting “pictures” from the concentration of radiation in your thyroid. From these pictures, the doctors can determine the size of your thyroid, and whether the iodine was taken up everywhere in it (most likely Graves), or whether there is a concentration of it in a particular spot (may not be Graves). Anyway, the test itself is pretty boring, but can give your doctor good information about what is going on.

          Wishing you luck.

          Bobbi

          Anonymous
            Post count: 93172

            Hi Rik,

            Yeah, we guys (don’t let my name fool you) get this thing, too.
            We are ‘special’. Bobbi has done a great job of (as always) of
            describing the scan. The tube is just a medical geiger counter.
            Can’t help with the Dr. I live on the other coast.

            Good luck,
            Dana

            Anonymous
              Post count: 93172

              I saw my GP yesterday and she ordered a thyroid scan (uptake) for
              next Tuesday and Wednesday due to hyperthyroidism. Are the pills
              that I take radioactive? I go the next day for the “scan” to
              determine if I have Graves. In reading Sara Rosenthal’s book,
              The Thyroid Sourcebook, she says not to take this test to
              determine the level of hyperthyroidism, but to determine why one
              has a goiter. My goiter is fairly large. I see the
              endocrinologist next week, too. Can a blood determine Graves, or
              does it need to be the uptake scan? Also, the doctor increased
              my beta blocker to 75mg per day. I’ve been taking them a full
              week and my hands are still trembling. I’m hoping the thyroid
              meds will start to work fast (on them for 5 days) so I can go
              off the BBs.

              Any help is appreciated.

              Anonymous
                Post count: 93172

                Nancy:

                Hi! Yes, the pill you will be given for your uptake and scan will be one of the radioactive isotopes of iodine. It is a measured, MINISCULE amount, and if you want to read more about this process, since you have Sara Rosenthal’s book, go to pages 182 and 183 (in my copy). There are a number of conditions which can cause us to be hyperthyroid. The most common one is Graves, but there are others. This diagnostic test does help the doctors to weed out the cause. In the event that it IS Graves’, this test also would help your doctor to determine how much radioactive iodine you might need should you decide to have the RAI treatment. You might also want to go to p. 189 of her book, and read the section entitled “The Long Half-Life of Radioactive Myths”. It might ease some of your concerns.

                Additionally, five days is WAY too soon for the thyroid meds (I assume you are talking about one of the antithyroid drugs) to have any impact on your level of hyperthyroidism. Our thyroids have stores of both iodine and hormone, and before the antithyroid drugs can be really felt, these stores have to be used up. It can take a month or so, maybe even longer, for the ATD’s impact to be shown. This is because they only interfere with the thyroid’s ability to take up NEW iodine to make hormone. So, you have to be patient a little while longer.

                Wishing you good luck, and good health soon.

                Bobbi

                Anonymous
                  Post count: 93172

                  Nancy — The thyroid uptake scan is painless and I was told it doesn’t contain any more radioactivity than you would get having X-rays. I had mine done the first of January and saw the endo on Jan. 29. I immediately started taking the anti-thyroid pills (8 per day) and beta blockers (4 per day) and the tremors have all but stopped for me!

                  Anonymous
                    Post count: 93172

                    Could someone please explain what they do for a thyroid scan and what it is supposed to reveal. I go this Wednesday am, pm and Thursday am this week for thyroid scans and have never had them and am a little nervous.

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