[Ski]

#1066649

So sorry to hear you’re going through this ~ as far as whether to call it Graves’, I think that’s just a misunderstanding among doctors. The eye disease is actually a separate disease ~ once upon a time it was routinely referred to as Graves’ Eye Disease, but lately it’s more commonly called Thyroid Eye Disease (we refer to it as "TED"). It may come from the same antibodies, or just similar antibodies, but it commonly occurs in people who have had Graves’ thyroid disease at some point. Your ophthalmologist is the right doctor to treat TED. The one you’re seeing sounds like they know what they’re talking about.

TED antibodies invade the tissues (fat and muscles) behind your eyes and cause swelling, which then causes the discomfort and difficulty of movement and bulging. It’s very common to have one eye more affected than the other.

Radiation can help keep your swelling down. Typically the effect lasts as long as you are still doing radiation, though you can also use prednisone (oral steroids) to reduce swelling. Steroids and radiation do carry some risk, so you should have a frank discussion with your doctor about the risks and benefits, and make some decisions together. TED has a pretty standard disease curve where you have a period of changes, followed by some stability, then a bit of improvement, and finally everything quiets down. At the very end (cold phase) you can pursue surgical remedies to the symptoms that remain. That can take time, and it’s hard to wait. Until then, it’s wisest to avoid surgery, because it can cause a re-invigoration of all the worst symptoms. During that period of time, if your vision is threatened, radiation and steroids are the most common remedies.

Search on the board for "TED" and I’ll bet you find a GREAT deal of information. Glad you found us. ” title=”Wink” />

[sunshine]

#1018714

HI I’m new I came across this web site while I was looking for any information I could find and it has been a great help.
My story I was dignosed with Hyper back in Aug of 08, I had RAI in Sept 08, where I quickly went to Hypo, at which time I started taking synthroid, I have blood work every three months and the synthroid has been adjusted back and forth, just when I thought I was becoming some what normal (Oct 09) my left eye started swelling and watering, well I had just had cataract surgery and thought this was the reason even my eye doctor stated I now had dry eyes from surgery, well I went to another eye doctor for a second opionon who sent me to a oculoplastic doctor,by this time I am now seeing double when looking up or down and having pain in the left eye, he took one look at me and said you have graves. Last week I had MRI and a eye field test, the doctor recommend that I have radiation treatment which I start on Monday. Has anyone else been through this and what can I expect. I had a mask made of my face yesterday. Oh by the way when I called and told my thryoid Doctor about the graves she said no way because you have had the RAI. I’m so confused and hate looking at my face lots of tears

[sunshine]

#1066650

Thank you so much for your reply this wed-site is a life saver so much information

[Bobbi]

#1066651

Hi, sunshine:

I know just how awful it is to have the eye disease diagnosed. I didn’t have a very bad case of it, because I never needed surgery. But I got double vision, and a bit of protrusion, and the fat pocket swelling, etc. At the time this happened (about 10 years ago or so), the docs were not routinely doing radiation to try to contain the swelling of the eye muscles. It was being studied at Mayo, and I tried to get into the study but was not able to. Anyway, my doctors took a wait and see approach, watching for problems with the optic nerve but not prescribing anything. I was in a panic for a lot of months.

But as Ski said, the eye disease does remit. After the so-called "hot phase" where symptoms come and grow, the disease goes quiet, and over time, some of the symptoms go away. I now only have doubling of my vision when I’m tired, and the appearance of my eyes has improved significantly, even though they don’t look pre-disease "normal." So, if you can hang onto that information, it may help you to keep a bit calmer during your hot phase.

I do wish you good luck,

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