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  • Anonymous
      Post count: 93172

      The issue with our disease is that it is caused by antibodies. Another wya of saying this is that your thyroid is permanently diseased by antibodies. Antibody levels can fluctuate for no well-understood reason. For some/many of us, the only way to eliminate the problems caused by the antibodies is to eliminate the thyroid. With sufficient thyroid cells destroyed, the antibodies cannot any longer mess with the levels of thyroid hormone in the body.

      The weight issue is not clear-cut, nor simple. There are a variety of reasons for weight gain after treatment. Some of the weight gain is good. We lose muscle mass while hyperthyroid — especially in the large muscles of the legs and arms and chest. When this muscle disappears, we lose weight. It is horrible weight to lose however. It makes us weak, and its loss also LOWERS metabolism, meaning we cannot eat as much as before without gaining weight. Muscle returns, slowly, after treatment brings us back to normal levels of hormone. This RAISES our metabolism, allowing us to eat more without gaining weight.

      If you have been hyperthyroid long enough, in addition to the muscle loss, your body may have started to go into “starvation” mode. It has been discovered that when the body senses starvation, it begins to process food more efficiently, drawing out more nutrients from the food. The body lowers the metabolic rate. And it has also been shown that the body starts storing more calories as fat, to try to fend off the starvation. (This type of information has been developing from research in malnourished parts of the world, where there is a concurrent increase in obesity. Also, Japanese sumo wrestlers, who carry quite a lot of fat, are another example. They do not eat a lot, and they exercise a whole lot, and their bodies convert more calories to fat than do the bodies of ordinary people.) So, insofar as hyperthyroidism debilitates the muscles and may cause sufficient weight loss to trigger starvation mode, we have an issue with weight.

      The message I’m trying to convey is that you must not choose your treatment option based on weight concerns. It won’t work. And continuing to be hyperthyroid might make your weight issues worse if allowed to go on too long. So, get effective treatment –whether it is the ATDs, RAI or surgery; eat wisely, get exercise when allowed, and EVENTUALLY you can expect to have normal weight for you.

      I did RAI. It made me healthy again. My mom did RAI. She got healthy again. And our weight issues were both normal. Yes, I gained a bit of weight. But the first 15 pounds of weight that came back did not change my clothing size — i.e. it was probably returning muscle. I stablized out about ten pounds UNDER the weight at which I had become sick, but about 20-25 pounds higher than the bottom I had hit while hyperthyroid. I considered that a fair exchange for being healthy again.

      Bobbi — NGDF Online Facilitator

      Anonymous
        Post count: 93172

        Hi-
        I was diagnosed in December 2005, after waiting a month to see a specialist since my PCP would not do anything, and I lost my job and insurance, which added to my stress levels, and caused everything to get worse. By some miracle, I got a job a month later, and am now on my second endo, since I am finding it difficult to find one that cares about how I feel, not just the lab values.

        I am on Tapazole, 10 mg a day, and have had much trouble finding the right dosage, I am still hyperthyroid. I have only been on this dosage for 2 1/2 weeks, but I am still feeling really bad, been having panic attacks for the first time in my life, anxiety, depression, high heart rate (100+ resting)and no energy. My whole life has changed and I am very frustrated. I used to be very active at the gym 3 times a week, salsa dancing every weekend. Now I can barely make it to work and can’t concentrate in a new job where I have to learn a lot of technical information-my memory is shot!

        I went to a new PCP who told me that by this time if my levels on the Tapazole weren’t regulated I should strongly consider RAI. I am very scared about this! I have already gained about 10 pounds (I initially lost some, but even though the net effect is back to normal I am flabby and don’t fit into my old clothes, since I have only gained back in the hips and butt!!. Also, I have some mild to moderate TED. I am worried that the RAI will make it much worse, and as I have been on Prednisone before multiple times for asthma and another autoimmune disease (ITP)I don’t want to take it again and gain even more weight. My other difficulty is that I can’t take a lot of the beta blockers since they make my asthma worse.

        I would love to hear some positive RAI experiences, and how difficult it is or not to regulate the thyroid supplement afterward, if it is easier than regulating the tapazole.
        Also, has anyone used any natural supplements or therapies with any success. I have started 5 htp for the anxiety and depression as well as a powdered magnesium supplement, which seems to help calm me down and has eliminated the muscle cramps and tightness in my neck.
        Sorry this is so long!

        Anonymous
          Post count: 93172

          A P.S.

          Supplements should be checked out with your doctor and pharmacist to make sure that they are not interfering with your treatment plan.

          Bobbi — NGDF Online Facilitator

          Anonymous
            Post count: 93172

            Just wanted to introduce myself. I am a 34 year old mother of 4 with Graves disease. Diagnosed back in 2000 after having the flu during November 1999. 3months later I was having rapid pulse rate. I went to dr. and said i had Graves. I was told to go RAI and i refused after speaking with a Radiologist. We were trying to get pregnant (my 2nd his 1st) and didn’t want to wait 6months after RAI. We found a wonderful dr. who said to try PTU which no one said to try before. He explained that it might take a while to get into normal levels. It took 3 months! I was able to get pregnant with the help of a Reproductive Endo(RE) and during my 3month of pregnancy was taken off of PTU due to higher levels. I was fine the rest of the pregnancy and was able to get pregnant again when that child was 10months w/help of RE again with my 3rd child without any PTU at all. AGain during that pregnancy I was fine and when 3rd child was about 4 1/2 months old 2nd child and I fought a horrible viral infection(Rotavirus) and 6 weeks after that infection my hair was falling out and I was stuttering and pulse was so high. My old endo retired and I had to seek another whom didnt think i needed to be seen right then. My regular dr. insisted and I was put on high doses of PTU, all of my levels were off and it was bad. I again was normalized on PTU fast and within a few months was fine and was taken off the medicine and was fine on my own with no medicine for 7months when I found out i was pregnant with 4th child ON MY OWN and not drugs from RE. We were thrilled and very happy that i was able to conceive on my own and that my eggs had become better when thyroid function was restored. Again I was fine during this pregnancy as well and when 4th child was about 4months old I again have a bad virus and 6 weeks later found to be loosing my hair again and dr. (same one i didnt like but didnt have a choice) said he would not treat me and to come back in 6 weeks. My levels were just slightly under the .35 mine was .29 but my hair and heart rate were bad. He said he would put me on stuff to help the heart rate and I said NO why give me a drug to help the heart rate when all you have to do is treat the reason why the heart rate is doing this? DUH! So I researched my old Endo who had retired. I remembered he had a woman in his office with him and I found her,she continued some where else and had another associate with her as well. I found them and went to them. I had medicine from before and started it WITH my general dr’s approval. By the time i got to the new endo she tested me and agreed that the dose was what she would have put me on and said my levels were great and asked how i was and I said fine no more hair falling out and i was feeling better. She said well take it for another 4 weeks then stop then test 4 weeks after that and i did and have been fine every since. She did say I Have to be careful with getting sick because that seems to be the trigger of me going out of the levels that are good. Just thought i’d give some info about me. Have a great day to all. I am always looking for information regarding Graves disease and researching about it so i can help others as well. My mother was just diagnosed at the age of 52 with Hypo(i think its Hashi’s) and is now on Synthroid.

            Anonymous
              Post count: 93172

              Hi, and welcome to the Board.

              A comment — about the heart drug the doctor wanted to put you on. While we are hyperthyroid the heart is adversely affected in two ways. First, it beats altogether too fast, and is, as a result, inefficient at moving oxygenated blood through the body. Second, there is an “electrical” control system (for want of a better, more medically correct term) that regulates the rhythm of the beats. Too much thyroid hormone throws that control system off from time to time and arrythmias can suddenly occur. Arrythmias can cause medical emergencies. So in the future, if you find yourself hyperthyroid again and your doctor recommends a beta blocker, you might want to consider taking it, temporarily, until the other drug, the antithyroid drug (or ATD) has gotten your thyroid levels under control. The beta blocker my doctor prescribed for me was short-term and acted quite quickly. The ATDs like PTU do not always control things quickly enough to adequately protect heart function.

              Bobbi — NGDF Online Facilitator

              Anonymous
                Post count: 93172

                I am new here and wondering if Graves can also effect your back?

                Anonymous
                  Post count: 93172

                  Graves disease basically affects thyroid hormone production. A small percentage of us also develop skin problems on the lower legs (pretibial myxedema) and eye muscle disease (opthamopathy). These are all well-known associated problems. Many of us have other problems that occur while the disease is going on, and we wonder if there is any association. When it comes to problems with backs, knees etc., the theory is that the loss of muscle while hyperthyroid could help to aggravate pre-existing conditions that require muscle strength. The weakness we feel while hyperthyroid is due both to muscle loss and also, probably, to the muscle cells improperly functioning under the load of too much thyroid hormone.

                  Bobbi — NGDF Online Facilitator

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