# Graves' Eye Disease??



## flygirl (Sep 1, 2009)

Hi
New to the message board because i am at a loss.
I was treated 2 years ago for Graves' with the radioative iodine. All went well. I gained weight as my endo told me i would....lost that after several months. Then my hair started to thin out....that has stopped and is growing back. Now i have classic Graves' eyes. This just started 4 months ago. More in my right eye then in my left. It is so noticable and i am so self concsious about it. Not to mention my eyes are watery and itchy with lid retraction. 
I have seen a Graves' optamologist and she recommended the surgery (bletherplasty to remove the fat and correct the lid retraction). I am not sure i want to go down that road. 
I also have to add that i recently had blood work done and my thyroid levels are too high...i have adjusted the dosage. Will this help my eyes???
If anyone is currently experiencing these problems and can help, i would apprectiate it.


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## Andros (Aug 26, 2009)

flygirl said:


> Hi
> New to the message board because i am at a loss.
> I was treated 2 years ago for Graves' with the radioative iodine. All went well. I gained weight as my endo told me i would....lost that after several months. Then my hair started to thin out....that has stopped and is growing back. Now i have classic Graves' eyes. This just started 4 months ago. More in my right eye then in my left. It is so noticable and i am so self concsious about it. Not to mention my eyes are watery and itchy with lid retraction.
> I have seen a Graves' optamologist and she recommended the surgery (bletherplasty to remove the fat and correct the lid retraction). I am not sure i want to go down that road.
> ...


Hi and welcome to the board. I am so sorry to hear that you have GED (Graves' Eye Disease.)

Straight out; the concensous of opinion is to not have any surgery until the antibodies quit attacking the orbits of the eyes. There is much to be done in the meantime. I personally had radiation to both eyes, 2000 RADS, 3 times a week for 6 weeks concurrent w/ Prednisone. That stopped the infiltration in it's tracks. I then had to wait 18 months to be "sure" all was well and also so the surgeon could get a correct assessment as to what needed to be done for by that time a lot of swelling had abated. One would not want to hurry into surgery w/ the eyes. Many many have had to have these surgeries more than once; alas. And that is not a good thing. Your eyes can only take so much.

The above is my humble opinion based on experience and also from talking to many others w/ GED.

What medicine are you taking? Are you taking an antithyroid medication for hyperthyroid/Graves'? How much?

Treating the thyroid does little to treat the eyes. I am glad you are seeing an Ophthalmologist.

What is the treatment for thyroid eye disease?
Medical control of the thyroid disorder often does not eliminate the eye problems, which may last one or two years longer.

http://tinyurl.com/muo469


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## flygirl (Sep 1, 2009)

Thanks for the information.
I have never heard of radiation for the eyes. Why didn't my opto. suggest that? Do your eyes look like they did before GED??
Yes, i am currenty taking synthroid .137 6 days a week. It is a generic brand by Mylan. I do question generic drugs.
Any suggestions on reducing the swelling around the eye?
I wonder if allergies or certain foods affect this condition.
Thanks again for your input.


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## Andros (Aug 26, 2009)

flygirl said:


> Thanks for the information.
> I have never heard of radiation for the eyes. Why didn't my opto. suggest that? Do your eyes look like they did before GED??
> Yes, i am currenty taking synthroid .137 6 days a week. It is a generic brand by Mylan. I do question generic drugs.
> Any suggestions on reducing the swelling around the eye?
> ...


Hi! Hope your day is going well and you are welcome. If I can help, I will.

I am happy w/ my eyes. The proptosis was so bad that the corneas of both eyes were bulged and they also touched the lens of my glasses. I also went blind in the left eye due to optic nerve compression which gratefully was restored to me w/the radiation and subsequent orbital decompressions. I had to have some eye lid muscle surgery also (Meuhlerectomy) and one eyelid is a bit slanted but that is all okay. Trust me. I am one very very grateful person. The left eye is still out a bit but not so that anyone would notice except for me. That also is okay. Like I say, I am grateful. I had a wonderful and very caring surgeon.

Here is some info on the orbital radiation. From what I read, it is good to do the radiation concurrent with Prednisone for best results.

http://tinyurl.com/lc9fhl

Straight on answer? No, my eyes do not look like they did before Graves'. Nor does my face and other body parts. Graves' is devastating. But there are other worse things to have and I know this so once again, I remain grateful.

Icepacks help reduce periorbital edema. Sleeping with the head slightly elevated helps also. Allergies definitely affect the eyes; after all, allergy problems most usually are autoimmune in nature also.

You could also try Kenalog injections. That is the new kid on the block. Some say it works great; some say not.


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## flygirl (Sep 1, 2009)

Thanks so much.
I am glad you are doing better.
There are worse things to have but this is no cake walk either. It seems it's one thing after another. I thought it would all end with the radiation.
thanks again........


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## Andros (Aug 26, 2009)

flygirl said:


> Thanks so much.
> I am glad you are doing better.
> There are worse things to have but this is no cake walk either. It seems it's one thing after another. I thought it would all end with the radiation.
> thanks again........


No, it's not a cake walk. Don't despair; I and the others are here for you!

"The pendulum always swings the other way!"

Sooner or later, it does get better. Fight for your health. You "can" do this.


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