Hi Elaine,
I hope all is well.

Quick recap: Diagnosed w/ Graves July of 2008, had RAI July of 2008, started exhibiting mild eye symptoms approximately 8 months after RAI (minor lid lag in right eye, swelling of the right eye lid). Approximately 4-5 months after right eye exhibited symptoms, left eye began (same symptoms as right eye). I had to start wearing glasses too due to near-sidedness.

I’m currently stable on 88mcg of Levothroid. My most recent labs from December 27, 2011 are—
TSH: 1.60 (range: 0.10-5.50)
Free T4: 1.6 (range:0.8-1.7)

Up until recently, my right eye has improved dramatically. My left eye has never really improved even after almost 3 years, it’s basically stayed the same. Over the last couple of weeks, I’ve noticed that on some days even my right eye looks a little more swollen than usual, but again it’s only on certain days, and for the longest time, it seemed to have almost resolved. That change prompted me to make an Ophthalmology appointment, and the Ophthalmologist that I saw gave me some vague answers to the questions that I had. Since I’m a hypochondriac, this was not reassuring in the least. My regular Ophthalmologist is on Sabbatical until June, so I was stuck seeing a random Doctor. He measured my eyes and said that everything looked ok, when I asked him if the measurements had changed (I’ve always been normal), he said, “not really.” This was not reassuring to me, so I asked him what he meant about “not really.” His reply was, “Measuring eyes is an art, and not every Doctor does it the same way, but compared to last time it’s not gotten any worse.” He also mentioned that the lid lag seemed to improve by the notes that he read about my previous appointment. When I asked him if my eyes seemed stable, he said it’s hard to tell. So I asked him what the chances were of things getting worse (i.e. protrusion, etc), he said that that’s also hard to tell and that it could very well happen, especially if the hormones get out of control. Now, this really scared me. I know that there’s no way to tell if, how and when TED will/can occur, but I was under the impression that if eye symptoms were exhibited and things had been stable for years that would decrease the chances of things getting worse? So, my question for you is, is there a strong possibility that my eye symptom s will get worse over time? I really hate being vein about the situation, but it’s not me that I’m really concerned with (I’ve kind of prepared myself for an event like this, so I think that if things changed dramatically, I’d be able to handle it), it’s more my husband/family/etc. that I’m worried about, I’m not sure how easy it would be for them. It really isn’t about the protrusion; it’s about the mean things that people think/say/do when people don’t look “normal” to them. I know how mean people can be, and I don’t know if I’d be prepared to deal with that aspect of this process.

Any insight that you could provide is always greatly appreciated, and well respected.

Thanks in advance!

Best,

DG1979