[snelsen]

#1064235

Hi Susan, if you are reading about this, the name used is TED, thyroid eye disease, not GED. If you use the search engine, and enter TED, you will see lots of posts about it, including many of mine. Briefly, there are two stages of TED. The inflammatory stage, which is the first one, and it can last 1-2 years. It is sometimes called the "hot phase." Next is the fibrotic stage, sometimes called the "cold phase." I totally understand your discouragement. I have had the first stage for about 1.5 years now,and it occurred many, many decades after my hyperthyroid state. I did not have RAI, I wanted surgery. Like you, I was fine for over thirty years. My eye situation did get worse, with double vision, extreme light sensitivity, dry eyes, eye drops, lubricant, all the rest. I was so so discouraged. The first doc who diagnosed it, held up two fingers on one hand, and five on the others.
He said that this was a long haul illness, and that the whole course of the disease would take as much as two years, and there was a POSSIBILITY of five surgeries. Of course, this is related to if you do/don’t have double vision, if there are complications by having swelling on your optic nerve, and if eyes bulge so much that they require or patients prefer to have the surgery which makes them not have bulging eyes, look like they are staring.
From my own experience, I saw a neuro-ophthamologist, who tested visual fields and color vision, and since my double vision was so bad at the very beginning, was also going to a pediatric ophthamologist, for more measurements. After a year and one half, on 9/22,I will have eye muscle, or strabismus surgery, to move the muscles in an effort to help the double vision. My eye shape has changed so much, that after that I need to have eyelid surgery.
I KNOW that this is discouraging right now. Do you have further appointments with the two docs?
The facilitators will be writing to you, and they are better than I am at providing information that will be helpful to you.
I am in the middle of TED, and everything I have said here, represents my experience with TED. I hate it. But it WILL end.
The reason I go to the neuro-eye doc is that he moniters my optic nerve, and vision in general. There are very very rare instances when people with TED begin to lose vision, one of the first signs is not seeing the color red as well as you used to.
This can be serious, requiring a surgery to relieve the pressure on the optic nerve. That is caused by the swollen muscles in the eye (if you have it) and increased orbital fat (if it is there.) I am one of the extremely small percentages of people who did have to have an emergency orbital decompression to make more room in my eye for all the nerves, especially the optic nerve. It worked fine, but I sure was glad I had someone monitering me carefully.
Shirley

I

[Kimberly]

#1064236

Hi Susan – Shirley gave you some great info on the course of the eye disease. Most of us with Graves’ will experience *some* level of eye involvement during the course of our disease. However, the good news is that most patients do NOT have to deal with the *worst* of the symptoms, such as double vision, proptosis (‘bulging"), and potential nerve compression.

It’s great that you found an opthalmologist who is familiar with TED, as this person will be a key member of your team for the next couple of years. For now, the best thing to do is to follow your doctors’ advice in terms of keeping your eyes lubricated. You might also invest in some wrap-around sunglasses to protect your eyes from further irritation. Finally, you might consider using blocks to elevate the head of your bed a bit, as this can be helpful in keeping the swelling from getting too bad at night.

Best of luck!

[susandemarco]

#1018358

I had RAI in January of 2010. Up until the end of June everything seemed to be going very well. Then my eyes
started to get puffy. I went to see my endo and an opthamologist who deals with Graves Eye Disease. They both
said that I had a mild case of GED. Since then they have gotten puffier, but they are not buldging. The only
thing they told be to do is put rewetting drops in and my endo told me to put lacri-lube ointment in at night. I feel
so helpless and depressed because noone can tell me how long this is going to take to burn itself out. Both doctors
told me that it will go back to normal, but cannot say when.

Has anyone out there had this problem, and if so how long did it take to return normal.

Thanks,
Susan

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