[gemini52]

in reply to: What Services Would You Like to See the Foundation Provide? #1170850

Does anyone know if there is an existing support group in San Antonio, TX?

[gemini52]

in reply to: Graves Opthalmopathy #1072660

Thank you to those of you participating in this forum; I already consider you friends.

True to her word, my ophthalmologist put in a referral for me to see an endocrinologist. That appointment is scheduled for May 17th. In the last 2 years, I have used steroid bursts twice and found relief – but not lasting relief – from the upper and lower eyelid swelling. I will talk with the endo about this, as well as use of selenium – primarily to assist the lower eyelid/orbital area swelling. Also want to say to snelson, that, yes, the wording on my orbital CT scan was “unremarkable” vice “normal.” Ditto to whomever gave the thumbs up to frozen peas!

To belldandy112 (et al). I have the upper and lower lid swelling (primarily lower right eye at this time) but limited eye strain. I have no compression of the optic nerve, dry eyes, nor noticeable protrusion. Thyroid function is normal and CT scan “unremarkable.” I do have retracted upper eyelids which make my brows/brow bones seem especially noticeable. My eyelashes have all but disappeared.

It’s quite maddening. More thanks to all of you.

[gemini52]

in reply to: Graves Opthalmopathy #1072654

All,
After 2+ years of eye issues (upper lid retraction; significant upper lid laxity; upper eyelid swelling and discoloration; edema), I have recently been diagnosed with Graves’ ophthalmopathy – TED. This came about as I was exploring options for cosmetic upper and lower eyelid surgery; one of the docs took one look at me, asked me about the upper eyelid retraction which I must have been blind to until that day (!), and then sent me to a specialist because of his concern that I had TED. Interestingly, all thyroid function tests report normal range, as does orbital CT scan. Nevertheless, I accept the diagnosis and will see my ophthalmologist every few months to monitor changes. At this time, I don’t have much evidence of proptosis. According to Wikipedia, I am in Class 2: which includes upper lid retraction and stare, soft tissue involvement (edema).

The TED diagnosis has taken a toll on how I view myself. It is hard to look at myself much less anyone else in the eyes. I seem to be withdrawing from social situations; I also feel very sad. I have decided to buy softly tinted glasses (without correction) to wear with my contact lenses when I have a flare up – which is more often than not anymore.

Lots running through my head but will stop now. I’m new to the forum and am grateful to have a place to go, to feel like there are others who “get it.”

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