Has anyone had Thyroid Eye Disease occur after being Euthyroid for many years? I was treated with RAI in July, 2002 and became Hypo in November, 2002. My levels have been stable for 5 years. In January, I began to experience swelling around the eye, excessive tearing, double vision and pain on upward gaze. I have had three courses of steroid treatment and am still having flares. The Opthomologist is thinking about using steroid injections directly into the eye, rather than expose my entire body to the effects of more oral steriods. I would like to know if anyone else developed eye disease when neither hyper or hypo and what types of treatment worked for them.

There are patients like you, who start having eye symptoms long after their thyroid issues are resolved. You're in a small percentage, but it is known to happen. From what we heard at the conference a few weeks ago, the intraocular steroids you mention are in the forefront of the treatment of TED, and the doctor who spoke said very good things about the results they've experienced. They also spoke of radiating the orbit (directed radiation from outside, not the same kind of thing as RAI), also meant to supplement the reduction in swelling and help minimize the need for oral steroids.

The main idea is to keep the radical changes at a minimum while the disease is in its "active phase," because hopefully that will reduce the need for intervention after you reach the stable phase.

I know this was written more than a year ago, but I have joined the site just recently. I am a classic case of "years after."
I had thyrotoxicosis in 1959, euthyroid for almost 40 years. Then a little hypo, began Synthroid. All fine. In April of 2009, I had sudden onset of double vision, however, my eyes were scratchy and itched since 2003. So I am one of the small percentages, sure wish I weren't. I am scheduled for an orbital decompression 2/2/10 due to optic neuropathy.
I'd love to hear from others who have had the decompression and are glad they did! Shirley

The orbital decompression was one of the best decisions I ever made!

That is great to hear - because I am planning on having that surgery in March. I just went Hypo this past summer after years of Hyper, but have always had TED - now more diminished. But still lots of swelling and retraction of my lids. I did not realize that steroids were back in use. Wish I could have attended the conference.

Hi, I was browsing old posts, ran across yours. I know you have not been on the forum for a while, but thought I'd write, see how your TED progressed, or resolved. Did you have any surgery? Did it end up being mild or severe?
I hope all is well with you, and TED is not impacting your life, as it is still impacting mine!!!
Shirley