[ginux001]

#1060681

I recently diagnosed with thyroid related eye disease, Only one eye has problem.
My thyroid function is fine, TSH level is normal.
My doctor told me there is no cure for such disease. The doctor didn’t give me medical treatments except multivitamin,I only can wait for the surgery if it gets worse. I’m so desperate.
Anyone has same disease ? and what kind of medical treatments you received？
Anyone recovered or at least get better?

[Kimberly]

#1184114

Hello and welcome! Some patients do get thyroid eye disease either with no thyroid issues or years later after having thyroid issues.

The eye involvement typically goes through different phases. The period where symptoms are getting worse is referred to the “hot” or “active” phase. Once the “hot” phase is over, there is usually some improvement in symptoms…and then things eventually level out and stop changing. (This is referred to as the “cold” phase). If you reach the “cold” phase and still are having issues, there are surgical procedures that can be done to restore eye appearance and function.

If you are having compression of the optic nerve that is affecting your vision, doctors will move ahead with surgery ASAP to preserve vision. But in general, they don’t want to do surgery while your eyes are still changing.

There are also options for steroid therapy and radiotherapy, but of course, risks and benefits of these options should be discussed with your doctor. This video might also be of interest:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

https://www.youtube.com/watch?v=jy5y6gb2AHk

Hopefully, others will chime in with their experiences as well.

[Liz1967]

#1184115

Some people with mild thyroid eye disease do improve with no treatment but people with severe or moderate disease usually need medical or surgical treatment. The best advice I can give you is to find an ophthalmologist with a lot of experience with Graves and this might mean a neuroophthalmologist or an ophthalmic plastic surgeon. My disease was severe with optic neuropathy which is vision threatening. I had steroid infusions weekly for 12 weeks, oral steroids, orbital radiation (not RAI), and total thyroidectomy. After it stopped progressing for some months and was deemed burned out, I had bilateral orbital decompressions and lid surgery. I am awaiting muscle surgery for double vision. I am lucky I am receiving my eye care at a center known for its Graves ophthalmology care and my eyes are slowly getting back to normal. It does get better, but it takes time, patience and expert medical care helping you with your decision making. Hang in there. This is a relatively rare disease and new therapies are being tested all the time. Good luck!

[Author]

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