Severe Eye Problems

[PA225]

For the past ten years I’ve been getting hit repeatedly with bouts of extra-ocular muscle paralysis and orbital swelling. It can take anywhere from two to ten months for me to recover from an attack, and during recovery my ability to drive, read or work will be marginally to severely impaired. I’ve seen 14 different doctors more than 50 times, had repeated MRIs, carotid ultrasound exams, sinus CT scans, full neurological tests, and more blood tests than I can recall. I still don’t have a diagnosis, and as a result have had no focused treatment. I’ve been unable to get any doctor to pay attention to the fact that, in addition to eye muscle paralysis, I’ve also had parallel problems with substantial unexplained weight gain, severe tinnitus, elevated blood pressure, edema, hoarseness, skin lesions (including large shin lesions), thinning hair (and lost outer eyebrows), carpal tunnel aggravations, and other signs and symptoms that suggest a hypothyroid condition. I saw a rheumatologist for tests for a possible auto-immune cause for both the ophthalmologic and thyroid problems, and he found nothing (the TSH  was 2.2 but he did not test fT3 or fT4).  The doctors gave me large amounts of prednisone (65 mg/day tapered over six months) for the obvious eye inflammation but it was only partially effective. I accidentally stumbled on the fact that a small amount of prednisone (10 mg every other day) combined with one or two ibuprofen tablets a day, left me completely free of eye symptoms and also completely free of hypothyroid symptoms. For some reason, those two drugs in combination shut down whatever was causing both the thyroid and eye problems. My guess is that it is a mild immuno-suppressant, and that it kind of puts a leash on an over aggressive immune response affecting both eye and thyroid functions.  Neither prednisone nor ibuprofen does much of anything when taken alone but taken together, even in a small dose, they were incredibly effective. Unable to explain what’s happening, no one will prescribe continued use of this combination even though I had all positive results and no apparent negative impacts. No one helps me. They just keep looking at it as some kind of neurological or ophthalmologic problem even though they never find a cause on that diagnostic track.  Where do I turn for help?

[Mark Lupo, M.D.]

Your TSH in and of itself is okay -- would test thyroid antibodies -- TSH-Receptor antibody and TPO/Tg anditbodies to make sure there is no autoimmune thyroid process that could possiblly explain the eye symptoms (remember, just b/c antibodies are there does not mean it's the cause of the problem -- but if they are negative, then it's reasonable to conclude its not the thyroid).

[msfergy]

Hello, I am not a Doctor but your TSH is kinda high actually around mine and I have problems, you need to tell them you want a full thyroid panel done and antibodies also checked with a ultra sound. We all have problems here, check out the forums. The thyroid can cause strange things, the books do not explain it to the doctors so some ignore it. I am not sure about that ibro. and prednisone combo, i am on hydrocortison for adrenal insuff. but I am not sure if i should be taking Ibro with it alot, I beleive it could cause stomache bleeding. And skin lesions not sure about that one, what do they look like? Also do you get throat pain? I have thyroiditis and I have many symptoms and pain all the time and so do alot of others here.
msfergy