[curious]

in reply to: graves eye disease #1075685

Hi Sarah,
I was diagnosed with TED 4 months ago, think I’ve had it for about 10 months now, and my thyroid’s normal too.
It’s in both of my eyes, the most significant symptoms I have are dry, red, irritated eyes (have to constantly use lubricating eyedrops) and swollen upper eyelids, and sometimes my eyes hurt as well.
I hear you on the self consciousness and self esteem stuff, and especially on the hating looking in the mirror.
Just wanted to say hi. Reading your post was like reading my own thoughts.

[curious]

in reply to: Just diagnosed with TED and have some questions #1070003

Thanks Ski, i’ll look into that, would be nice to not pay full price. Interesting that you say you’re now able to wear your contacts for a while – the ophthalmologist said that wearing my contacts was probably the best thing for me since the swelling of my lids causes my lashes to rub my eyes, so the contacts actually provide my eyes with some protection. When I first went to my optometrist in November with irritated eyes, she said my corneas were scratched (she eventually referred me to an ophthalmologist when there was no improvement, who then referred me to another ophthalmologist who specializes in thyroid disorders). I went back another time when my eyes were hurting and the optometrist actually pulled out some of the lashes that were scraping. Anyway, I’ve always worn my contacts from when I wake until when I go to bed, so I’m just keeping that up to avoid scratching up my corneas again.

Wondering if anyone out there developed TED first, well before ever being diagnosed with Graves? As mentioned, I have some other symptoms which lead me to think I’m on my way to developing Graves (or maybe some other thyroid disease) even though nothing shows up in blood tests yet. Would like to hear from anyone else whose first symptoms were TED prior to any Graves diagnosis.

[curious]

in reply to: Just diagnosed with TED and have some questions #1070001

Paloma and Jake,
Thanks so much for your replies. The ophthalmologist had told me that almost 20% of his patients with TED show up as "normal" in their blood tests, but then he also said that most go on to eventually develop thyroid disease. So I guess it’s ‘wait and see’ for now, and hope that the eye symptoms resolve themselves. Have to say that I feel kind of like a time bomb, wondering if every weird sign or symptom is an indication that I’m developing thyroid disease.

Does anyone know what the actual percentages are for people with TED in terms of how many have Graves, how many are hypo, how many are euthyroid, etc? Most of what I’ve read so far associates TED with Graves almost exclusively – in most cases I find that it’s still referred to as Graves’ eye disease, not thyroid eye disease. Wondering what all the different possibilities are in terms of what I’ll most likely develop.

Paloma, That’s a bummer about the eye drops, the preservative-free ones aren’t cheap and I blow through them pretty quickly, pumping them into my eyes all day long! Good luck at the endo.

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