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!).