[Anonymous]

#1076509

Hi carolg,

First, if a doctor has measured your thyroid hormone levels and found you to be hypo, it behooves you to begin taking some supplemental thyroid hormone. No matter what the cause, if you are hypothyroid according to blood tests, you need more thyroid hormone. It can take a while to build up in the bloodstream, so the sooner the better to help you feel better.

Now, Graves’ Disease is one thing: a chronic, autoimmune thyroid disease. Thyroid Eye Disease (TED) is another thing: a chronic, autoimmune disease of the eye muscles. The antibodies are related, but not identical. The one does not control the other, and in fact, the name of the eye disease was changed from Graves’ Eye Disease to Thyroid Eye Disease specifically because there are patients with the eye condition that are NOT Graves’ patients, but are patients for other thyroid conditions. The whole relationship is as yet unclear, because autoimmune diseases are not well understood, but those things we do know. So it’s possible you have a hypothyroid condition, yet still have TED. Another possibility is that you’ve had Graves’ Disease (the thyroid condition) and you have had it for so long that your thyroid has burned itself out and is no longer functioning. An endo might be able to figure out which is going on with you, through more tests (antibody blood tests or an uptake/scan).

Your TED should be treated by an opthalmologist, preferably one who has experience treating TED patients.

There are many of us here who have “always been the healthy ones,” and yet here we are. I’m not sure what part that plays in everything, but someday maybe the big shots will figure it out. For now, make sure that you attain and maintain normal thyroid hormone levels. An imbalance either way (hypo or hyper) is very damaging to the body.

The eye disease can be tricky ~ an opthalmologist will be able to help you through it. One thing is certain: taking thyroid hormone will NOT make your eye condition worse. Stress *can* make it worse, so try and keep your cool as much as possible throughout. I know it’s hard, and TED specifically brings on a lot of emotional trauma ~ it’s very difficult to look different than you’re used to, and especially when it involves the eyes themselves. Do what you can to minimize your own emotional discomfort ~ wear tinted glasses, etc. ~ so you can continue to relate comfortably to those around you.

Come back often, there’s lots of good advice to be had here!

~Ski
NGDF Assistant Online Facilitator

[Anonymous]

#1020254

Hi, I am new to this site. I was diagnosed, once one eye started bulging, with graves disease- however my blood work shows that I am hypothyroid. My doctor says that I am a mystery which really concerns me. I was referred to an endo. doc who wants me to take thyroid medication. She prescribed a low dose of synthroid but I am so concerned about my eye and what taking thyroid could do. My neuroopthomologist that I saw said I definitely have Graves opthomalogy in both eyes after an MRI and tests. The left one is the bulging one. From what I read about Graves, I do not fit much of that profile, but I trust the doc who diagnosed it. For now all I have been doing is accupuncture, feeding my pituitary gland, lots of B vitamins. I have always eaten healthy, taken care of myself, very natural person. Help?????

I don’t know what to do. Has anyone had this same mystery?

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