Unfortunately, Graves' Opthalmopathy (more commonly known lately as Thyroid Eye Disease, or TED) has its own course, and there's really not a whole lot we can do to interrupt it. The one thing that may help as you go through this is to incorporate any kind of relaxation techniques that are helpful to you ~ I know it's the hardest possible time to think of relaxing, because TED makes everyone anxious. There is so much wrapped up in our image of ourselves, in how we see, in how the world sees US, that it's incredibly frustrating, and I understand that. Still, it's an autoimmune disease (related to Graves' thyroid disease, but not the same disease), and when we are stressed, it prompts responses from the immune system, which (in this particular case) "amps up" the autoantibodies that are attacking the tissues behind your eyes. Anything you can do to keep the stress level down will help to minimize the effects of the antibodies.
For the most part, TED takes 2-3 years to "finish." What happens is that we have a period of 12-18 months where the eyes fluctuate often. People who smoke experience the longer period, typically. After the period of frequent fluctuations (what we call the "hot phase"), there is a period of time where things just stay the same. After that, there is typically a short period of time where some improvements occur, and finally the patient enters the "cold phase" where no further changes occur.
During the hot phase, surgery is not a good idea, for several reasons. First, it can stimulate the antibodies and begin another phase of fluctuating. Secondly, you can overcorrect ~ the improvement phase will come later on, and that creates an entirely new set of issues. Finally, it can take away options you may have for correcting everything after the process has finished.
If your swelling is particularly severe, or the optic nerve is in danger of being compressed (once that happens, it's irreversible and you lose sight), steroids and/or directed radiation (a beam of radiation to the orbit of the eye) are possible treatments to keep the damage at a minimum. Steroids can be used several ways ~ oral ingestion, "pulse" IVs, or injections to the tissues behind the eyes. Steroids and radiation are only effective during the hot phase. You can explore using steroids AND radiation, in order to minimize the use and risks of either. If these things are not successful in keeping the pressure off of your optic nerve, then surgery may be indicated, even during the hot phase, because it will save your sight, but that is only in the most rare of cases.
For the most part, though, patients do not have the very worst symptoms of TED, and they are able to use the "wait and see" method of treatment. I know it'd be nicer to be done with it quickly, but it's just another lesson in patience for Graves' patients.
There are several things you can do to be more comfortable. You can raise the head of your bed in order to keep fluids from settling around your eyes as you sleep. You can use "wraparound" sunglasses to minimize the discomfort of wind/sun exposure. Use preservative-free artificial tears often to keep the eyes moist. You may want to explore punctal plugs (these were talked about in a recent post), which help keep tears on the eyes and minimize dryness. Buy a pair of lightly tinted glasses to wear around the office ~ it helps keep down irritation from flourescent lights and forced air, and it also helps to hide your eyes from view. If your eyes do not close all the way while you sleep, you should use either night-time gel products or a mask (or both) because corneal damage is also irreversible and can threaten sight.
Once you're confirmed to be in the "cold phase," you and your doctor can evaluate the state of your eyes and decide whether you want to pursue surgical correction. The thing that you're correcting, at that point, is the scar tissue that remains. Most people are very happy with the results of surgery, if they need it. Some don't need surgery after all ~ for some, the changes revert almost to normal.
It's no fun, we're sorry you're going through this. But you'll make it! Hot baths, yoga, whatever you LOVE, whatever nourishes your soul, that's important for you to do.
GDATF Online Facilitator