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!).