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Hi. I'm online and happy to answer your question today.
You can have thyroid eye disease even with a completely normal thyroid function tests, so even though you test normal that really does not rule out Graves Disease.
MRI is also a better way to evaluate the conditions of the eye muscles then CT scan. Also, a test in the ophthalmologists office, called a hertel exophthalmometer, is very useful in evaluating for this issue.
On the other hand, your endocrinologist is right....in the vast majority of patients exophthalmia from thyroid eye issues does not significantly change from moment to moment.
Have you had an ophthalmologist examine you when your eyes were "normal" and when they were "popping out and being fatigued"? If not, this would be something important to do.
The symptoms you have posted are very unusual and interesting. Perhaps it might be time for you to seek another opinion at a Large University Medical Center.
At an institution like that you could be evaluated and treated by a team of sub-specialists who are at the cutting edge of their respective fields. The best thing about these large teaching hospitals is that consultations are available with Professors and leaders in their field by just walking a few steps down the hall.
The Mayo Clinic in Rochester, Minnesota is an excellent example of just such a place as this. That being said there are many excellent teaching hospitals all across the country and I am sure that there is one near you.
If you could tell me what large city you live near and how far it would be possible for you to travel in seeking treatment I would be happy to give you some names. Of course, you could also ask friends and associates or check the internet yourself. Let me know what you would like to do.
Is there anything else you would like to discuss at this point or have all your questions been answered to your satisfaction?
I hope this information was helpful for you. But I do work for tips so I want to make sure you are happy with me before rating me. If you have another question on this or a related issue feel free to fire away. And please let me know if the rating system gives you any troubles. Thanks in advance, Dr. Rick MD FACS
Dear Dr. Rick
thank you so much for the detailed reply!
I live in NYC (10029 zip) and work in NJ (07059) and I'd gladly follow up with your idea to get examined by a university professor at a teaching facility. Would you please suggest teaching hospitals in my areas?
Also thank you for reinforcing the idea of seeing an ophthalmologist at the time when the eye is popped out, that has also been brought out before but it's hard to time with scheduling appointment systems most vision centers have given the precarious eye popping "mood". Do you think it is possible to "strike a deal" with my eye-doc (or any eye doc for that matter) where I would just show up when it's popped and he'd drop everything on his schedule for my visit? I guess I'd need one visit just to arrange the unscheduled visit if they'd ever agree to that - please help if you have better ideas.
Is it a good idea to start using perforating glasses in order to straighten the eye muscles?
And the last question: Is it better for eyes to look at the lowest brightness monitor for the looooong hours, vs brighter monitor screen settings?