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  • Anonymous
    Post count: 93172

    Hi guys,
    Just found you on the net. I wanted to share my experiences with this
    enigmatic and frustrating disease. I was diagnosed with Graves’ in 1992
    at age 40. My hormonal balance was easily controlled with PTU, but in 1993
    I developed severe eye disease. My endocrinologist referred me to an
    opthalmologist who referred me to another opthalmologist that specialized
    in corrective surgery for Graves’eye disease. After the surgery (actually
    about 2 years of successive surgeries)was explained to me,I decided to have
    the eye surgeries only as a last resort to going blind. I tried every
    conventional treatment for Graves’ opthalmopathy (eye disease). I took high
    doses of prednisone for a year (I then blew up like a balloon
    ..gained 70 lbs). I went to the Mayo clinic. I had my eye muscles
    irradiated (radiation therapy)…Nothing helped! I was losing my vision.
    In desparation, searched the medical literature to see if other treatment
    options were available. I found several articles where people that had
    a total thyroidectomy (removal of the entire thyroid, not just a part of
    it) also had significant improvement in their eye disease. Consequently, I
    had a total thyroidectomy at Emory University Medical Center in 1994.
    Within a month of having this surgery, my eyes were dramatically better…
    my vision was normal, my eye pressures were normal, my eyes moved back
    several millimeters. Over the past 2 years, I have waited for the eye
    disease to reappear but so far, so good! Next year I will probably have
    minor cosmetic surgery to improve the appearance of my eyes (they don’t
    really look that bad anymore).

    So you guys…. there’s hope. Oh yeah, I lost that 70 lbs I gained while
    on prednisone (finally!).

    Bye,
    Sharon

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