Hi, I think the most important thing for you to do is to have eye docs familiar with TED, managing your care. Not the endo. If you are having mild symptoms, scratchy eyes, dry eyes, I suggest that you get an appointment with a neuro opthalmologist for a baseline evaluation of your eyes. TED ranges from a spectrum of the symptoms I mentioned above, to more life altering changes, such as double vision. proptosis (eyes bulging out from the orbit) and in some cases, optic neuropathy, which is serious, but can be treated. I suggest you take it a step at a time, beginning here by learning that there are two phases to TED, the active or hot phase, which can last around 9 months to between 1, 1 1/2 years. During this phase, eyes are changing all the time. During the active phase, no surgery is done, because the measurements and symptoms are not stable. The exception is the optic neuropathy, which I mentioned above. That is when there is pressure (from the increased bulk of the eye muscles, and increased orbital fat) push on the optic nerve. Then an orbital decompression must be done to save vision. Few people have this problem. (but I did.)
When you get to the inactive phase, or cold phase. everything is stable, and if surgical interventions need to be done, it is at this time they are done. There is an order, or progression of surgeries than can be performed at this time if needed.
As you said, in the whole scheme of things, having good care for your eyes is the thing that matters. Whether your antibodies are up or down, makes no difference in the treatment and management of TED. So you are doing it
the best way you can.
Shirley
. Still wondering if anyone else out there has experienced this.
