Looking for ideas for Thyroid Eye Disease

May 30, 2011 10:49 AM

Anyone out there with Thyroid Eye Disease? What has worked for you?

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?

posted by artistic verisimilitude to health & fitness (4 answers total)

Don't rule out opiates - they're not as bad as you think. I have SLE/Rheumatoid Arthritis and I've run the prescription drug gamut, so I speak from experience.

Memail me if you want.
posted by guster4lovers at 12:02 PM on May 31, 2011

(I too have Grave's disease, though I do not have the ophthalmopathy.)

Story time: I'm in my early 20s, and was diagnosed 9 months ago after dealing with symptoms of Grave's since I was about 9. I struggled and struggled to get my doctors to believe it wasn't psychosomatic. The only reason I was diagnosed is because I finally bullied my new GP into sending me to a gastroenterologist, who was the first one to bother with a thyroid test. Then, against my preferences, I let my GP treat me instead of an endocrinologist. I went though an allergic reaction to methimazole before my GP sent me to the endocrinologist I needed.

So the moral of the story is don't listen to one doctor, especially when they don't tell you what you want to hear, dismiss your preferences, and aren't interested in addressing the issues you're having right now. And ten years is a long time. Have your endo recommend a new TED specialist.

Also, as you have both Grave's and Hashimoto's, maybe you're cycling through the hyper/hypo faster than your medications can deal with and need more intensive monitoring of your levels? And that with a different approach to monitoring, the opthalmopathy and the pain would improve somewhat? I am totally not a doctor, though, and have no clear idea of how the two diseases interact.
posted by syanna at 9:50 PM on May 31, 2011

Thanks for your input.

guster4lovers, I'm glad the opiates are working for you. I'm remembering the awful nausea and itching I always had when taking opiates after surgery, so much so that I always quit taking them when the pain was still pretty bad. That was when Motrin was still an option for me, though.

I think you're right, syanna, that keeping the thyroid levels under control is the key. Getting thyroid issues treated properly can be so difficult. My worst times with my TED were when I had endocrinologists who intentionally undertreated my hypothyroidism, because they were more concerned about the TSH test than about my health and symptoms. My eyes have been feeling better since increasing my dosage of Cytomel a couple weeks ago.

I'll ask my current endo (who is much better than the ones I used to see) to recommend a TED specialist. I'll also ask her about whether another condition I have will allow me to use a diuretic when necessary. That appears to be another option in treating TED.
posted by artistic verisimilitude at 2:00 PM on June 3, 2011

The facts that you have migraines-- some visual effects of which are caused by the occipital cortex pressing against the skull-- and that you find "sleeping propped up on a slant pillow (surprisingly helpful)" makes me think brain swelling could be a significant part of your TED.

Brain swelling is also a cause of mountain sickness, and the treatment of choice happens to be a diuretic: Diamox.

If your doctor is willing to let you use a diuretic, that's the one I think you should try.
posted by jamjam at 11:58 AM on August 12, 2011