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  • Anonymous
      Post count: 93172

      My husbands TSH was slightly elevated, indicating hypo, but clinical picture was hyper. Had lost about 20 pounds by that time. Doctor followed lab rather than clinical and put him on synthroid. Now he’s on tapazol having finally seen an Endo. The lab values are sometimes poor indicators. Good thing your doc is seeing whole picture. Some normals still feel awful

      Anonymous
        Post count: 93172

        What a helpful BB! I was diagnosed with Graves 3 months ago, although the dx was mostly symptomatic, I think. My TSH levels have been .2 and .3, and the free T4 and T3 levels have been normal. I have lost about 16 pounds and have a mild unilateral exophthalmos, but otherwise all of my symptoms seem to be pretty well controlled by beta blockers. My endo seems puzzled that I am experiencing early eye problems and continuing weight loss with only a slightly abnormal TSH level. Have any of you experienced a similar problem?

        Anonymous
          Post count: 93172

          Hi, Hilary:

          First of all, the eye problems have nothing to do with TSH readings. While the vast majority of us learn we have Graves due to being hyperthyroid, and THEN may get the eye involvement, the eye problems are not caused by our thyroid hormone levels — they are caused by the ANTIBODIES that can also cause the thyroid to go out of whack. Treatment for the thyroid problem doesn’t do much of anything for the antibody levels or the eye problems. You need to see an ophthamologist, in addition to your endocrinologist, if your eyes are involved.

          It may be that your thyroid is only minorly out-of-whack, right now, due to those same antibodies. That could stay the same, or it could worsen, or it could get better. There are some people who only get the eye problems. But be sure that your blood levels of thyroid hormone and your TSH are checked fairly regularly, to make sure of that. And you might ask for a thyroid uptake and scan, if that hasn’t already been done. My own TSH and blood levels were somewhat similar to yours initially, but the uptake/scan showed that my gland was VERY overactive. Beta blockers also helped control the symptoms for me, too. But what they really do is mask the problem, they don’t fix it.

          Wishing you good luck, and good health.

          Bobbi

          Anonymous
            Post count: 93172

            Everyone is different when it comes to thyroid disease. However, I too had severe symptoms of hyperthyroidism even though my tsh was normal but it was only 0.2 or 0.3. The first endocrinologist that I waited a couple of months to see did lots of bloodwork, etc., and basically told me to go on my merry way, that I was only “mildly” hyper according to the bloodwork, take a little tiny dose of anti-thyroid drugs/day. Boy, did I ever have to get rid of him. I thought I was going crazy and I actually ended up going to emergency, practically begging someone to listen to me. Luckily, the doctor in emergency gave me a thorough examination and reiterated that all my symptoms were endocrine related. He asked if I liked the endo I was seeing and I said no that I felt he was not listening to me. He asked if there was anyone else in particular that I would like to see. He made a phone call and within the next couple of days I saw a new endo who reviewed all my bloodwork and sent me for a radio-iodine uptake test/scan. She told me that even though my bloodwork was where it was, I had “severe” symptoms of hyperthyroidism and she consulted with my g.p. That was the best step that I ever took was to ditch the first endo. Meanwhile, that was in the Fall of 1995. In January 1996, I had RAI treatment. It has been a rocky roller-coaster ride since getting stabilized BUT I am determined to get there. There is such great support on this bulletin board, it has helped me enormously to see that others have experienced similiar symptoms/feelings that I have had.

            Good luck!

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