[npatterson]

#1075516

Dear Candace,

You have learned some things the hard way, and you are quite correct: Graves’ eye disease is completely unrelated to one’s thyroid status. This is confusing, because most of the time, they occur simultaneously. A person can have only thyroid eye disease (a very confusing name), and may develop Graves’ many years later; or the other way around, Graves’ first, and years later the eye disease.

"Your levels are fine” is a perfectly valid statement, but wouldn’t it be nice if it were followed with "Let’s see what else may be going on" OR "I don’t know what is wrong, but let me refer you to a thyroid specialist, or someone with more experience".

The standard of care for Graves’ Disease is TSH, Free T3 and Free T4. You may not get a lot of cooperation with having antibodies monitored (but having them measured is reasonable). Two reasons: one is financial (insurance companies will not be willing to reimburse for them), and the other is practical (you are working with the results of higher antibodies, as opposed to the effects of them).

Neuro Ophthalmologists probably have the most experience with the problems that thyroid eye disease presents, although there are good Ophthalmologists that can take care of us quite well. Probably the main factor there is experience.

I hope you find folks here that do care, and understand, and empathize with you. In fact, I know you will be hearing from them.

[candace3310]

#1019993

After having Graves’ Disease, Hyperthyroidism, RAI TWICE, and YEARS of this insane rollercoaster of medical "treatment", I have FINALLY found the Dr. I should have been seeing all along, and I’m just so greatful that I want to pass along some information, just in case it may help someone else, too. Just because your thyroid is "dead" has NOTHING to do with Graves’ Eye Disease, you still have to get much more blood work than just your TSH to monitor your status! See an Endocrinologist, have your TSH, Free T4 (Thyroxine), T3 Total, Thyroid Stimulating AB, AND ESPECIALLY IF YOU HAVE EYE SYMPTOMS, Have your Thyrotropin Receptor Autoantibody (TRAB) monitored. If you’re having Eye symptoms, you not only need to see an opthalmologist, but a NEURO-OPTHALMOLOGIST!! After having problems for 10 years, and finally getting fed up with "well, your levels are normal", but my eyeball fell out in my hand and noone seemed to care, I got very scared, very angry, then very determined and finally got somewhere with my medical treatment. Again, I hope this helps someone out there from the trouble I’ve had, or just to encourage you all. Thank you for your time.

[candace3310]

#1075517

my eye did literally fall out in my hand, i was rubbing it, funny thing is the first dr. i went to said, "well, don’t do that". now i’m being evaluated for treatment and hopefully some repair. I also forgot to add that the new endo. I’m seeing told me something else important, that if you’re taking synthroid, make sure you’re not being swiched between the name brand and generic, as this can affect the levels of medication you are taking. i had no idea there was any difference, but i am monitoring it now! synthroid has to be taken on an empty stomach, and preferably at the same time each day, and not with any vitamins, calcium affects the absorbtion of synthroid and vice versa, i’m told, so i take my synthroid first thing in the morning, wait an hour, eat, then take my steroids, and 12 hours after my synthroid, i take my vitamins.

[npatterson]

#1075518

It is called "spontaneous globe subluxation", and means the turning inward of the lower eyelid (it can be the upper eyelid), such that it positions itself behind and/or below your eye rather that in front of your eye. It is a strange feeling at best, and frightening at worse. When it happened to me, it was the only time I have called my eye surgeon at home! Like you, I was just rubbing my eye. Lots of warm compresses, and stretching the lower eyelid while it was "relaxed" got it back in place. I don’t think I touched my eyes for a month. It doesn’t actually come out of your head, because it is attached to all the muscles and your optic nerve. BTW, I don’t have that phrase at the tip of my tongue. I had to contact Jake to get it!

Does anyone else hate all the "eyes" that we have to see at Hallowe’en?

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