Post count: 1569

    Hi Sue,

    Catching up with a question back up the thread a bit — your regular eye doctor may not be able to see signs of TED in a regular eye exam, unless your eyes had changed radically since you saw them last. The changes from TED are most easily spotted using imaging technology where you can see the soft tissues around the outside of the eyes, that’s where the changes happen (the muscles controlling the eyes swell).

    I know it’s not particularly comforting, but autopsy evidence shows that nearly every Graves’ Disease patient has SOME level of TED — it’s just that, in most patients, the symptoms are so minimal that it’s not clear what’s happening. The comforting part is that only about 5% of patients end up suffering the very worst symptoms, so your odds are good for being one of the people who are not affected very much.

    Hypothyroid levels can bring out the symptoms, and bodily stress (like recovering from surgery) could also bring on a little “oddness.” The symptoms you were suffering when you went to the eye doctor are possible with TED, though of course I couldn’t say whether it was or wasn’t, in your particular case. It is common for TED to affect one muscle more than the others, so it’s more swollen, which can make one eye track differently, maybe more slowly than the other eye, then you’d get that sense that they weren’t working together.

    I had some period of time where I felt like my eyes were affected – my eyes protruded more than they normally did, and they were gritty and uncomfortable for a few months, and I could feel them being “pushed” from behind when things got REALLY bad. That may have lasted a few years. Then things started getting better, and now I’m pretty much back to normal, though my eyes are definitely affected when I’m tired.

    I realize you’re talking about “sunken” eyes rather than bulging eyes, but I think there are rare cases where that can be the result — it’s been a little while since I’ve seen a TED presentation at a conference, but that seems familiar. No harm in getting to know an ophthalmologist just to have a relationship developed, in case.