Looking for ideas for Thyroid Eye Disease
May 30, 2011 10:49 AM Subscribe
Anyone out there with Thyroid Eye Disease? What has worked for you?
posted by artistic verisimilitude to health & fitness (4 answers total) 1 user marked this as a favorite
Thyroid Eye Disease (TED) is the same thing as Graves' ophthalmopathy. Thyroid Eye Disease is caused by an attack on the eye muscles by the same antibodies that attack the thyroid gland. The result is swelling of the eye muscles, protruding eyes, and varying degrees of pain. It's very easily diagnosed by an eye doctor. My own primary symptom is acute pain.
My endocrinologist diagnosed me with both Grave's and Hashimoto's hypothyroidism at the same time. The thyroid eye disease specialist I saw ten years ago was not at all helpful. He said that he didn't like to do any treatment at all until vision was threatened, at which point he uses prednisone (a horrible drug!) and performs a dreadful-sounding surgery in which the sidewalls of the eye sockets are broken out to given the swollen eye muscles more room. He warned me not to take NSAIDs "because they might alter your intestinal flora". The constant acute pain in my eyes was unbearable, plus it was also triggering two three-day-long migraines a week.
I quit seeing the useless specialist and had my primary care doctor supervise my use of high-dose ibuprofen, and later Celebrex. That worked extremely well for over a decade, controlling the pain and dramatically reducing the swelling. Unfortunately, a common side effect of NSAIDs is hypertension, which I've been having a little trouble with. So now, having recently quit taking my beloved Celebrex, I'm looking for alternatives. I'm not looking for medical advice (YANMD and all that), just ideas. Any medical ideas, I will take to my physician, or use as a guide in finding another one.
These are what I've tried or am trying:
- naratriptan for each of the migraines my TED triggers (but they come back the next day)
- sleeping propped up on a slant pillow (surprisingly helpful)
- keeping omega-6 and omega-3 fat intake balanced to reduce inflammation
- NSAID eyedrops (Acular and Xibrom)
- acetaminophen doesn't work on this pain
- higher dose of thyroid hormones, as the worst pain seems to be caused by water retention due to low thyroid levels (under my endo's supervision, of course)
- artificial tears and moisture-conserving contact lenses
- avoiding secondhand cigarette smoke
I'm concerned about whether the NSAID eyedrops might have systemic side effects, and they don't work very well, anyway.
My eyes are protruding a little more than before I discontinued the Celebrex, but they don't seem to be continuing to get worse. My vision seems to be stable; color vision is one of the first things to go when the optic nerve gets stretched too far. My only concern is the pain. Sometimes it's extreme. I don't want to take opiate painkillers because of side effects.
Have you had experience with Thyroid Eye Disease? Do you have any other suggestions?