Hi dvogler,
There are a couple of things I think I can help you with.
First, the RAI that they give you to do a scan is *not* the same isotope as they use to destroy the thyroid. It’s not that they just give you “more” as a treatment, it’s actually a completely different thing. The scan RAI is not destructive at all, and has not been shown to aggravate eye problems.
The puffiness over the eyes is the symptom that finally sent me to the doctor to see what was going on. I can tell you for a certain fact that NOTHING helped the puffiness except raising the head of my bed. I tried cucumbers, ice, tea bags, everything. If it is caused by TED, it is not “swelling” as you think of it, it’s actually the fluid from behind the eye being pushed into your eyelids for lack of anywhere else to go. So no treatment would “make room” for it to return.
The right doctor to see about your eyes is an opthalmologist. They can see if what you are experiencing is related to thyroid eye disease (TED), or not.
Some few eye symptoms can be attributed to being hyperthyroid — the “stare” can either be caused by TED pushing the eyes out, or by “hyperthyroid spasms” in the eyelids causing them to stay artificially “open.” This is something the opthalmologist (NOT optometrist, NOT optician) will be able to sort out for you.
Raising the head of the bed is preferable to adding a pillow, because it’s easy to fall off a pillow in the night (or sink through). If the head of the bed is raised, you can’t “undo” that in any way and it really does help. As an extra bonus, my husband’s middle-of-the-night heartburn was also cured!
My eyes are, for the most part, back to normal. It’s been a few years since my initial diagnosis, but I believe my story is perhaps more common than not. It is VERY rare for people to get the very worst of the eye disease.
I hope this helps a little!
~Ski
NGDF Assistant Online Facilitator
