# Thyroid Eye Disease Help



## dlo1725 (Oct 30, 2011)

Have struggled with TED since October 2011. Eyelids are swollen, some under eye bags have developed and my eyes tear. I also have some double vision in one eye and the other eye is bulging slightly. I have utilized artificial tears to help dryness and was recently prescribed steroid eye drops.

The steroid eye drops have helped with grittiness but do nothing for the swelling. The eye doctor did discuss options such as prednisone and radiation treatments.

I am fearful of both the prednisone and radiation treatments but want to minimize the swelling.

Can anyone share their experiences and/or pro's and cons of treating this disease. I know that prednisone cause weight gain, brittle bones, moon face etc. I read that the radiation treatments have side effects as well but I know less about this treatment option.

Please help.


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## Prairie Rose (Nov 17, 2011)

Hello there,

Firstly, you are not alone.
Huge hug to you.

My journey with the exact same symptoms you are having began early last spring.

Numerous trips to my eye doctor and walk-in clinic doctors had me chalked up to having severe allergies.

Finally my regular md was back from being gone for a while and he knew within 3 minutes that this had to do with Graves. He set me up with a fantastic endo, who set me up with a fantastic opthamologist.

Are you seeing both an endo and an opthamolgist?

The optho put me on steroids--which helped a LOT! I was thrilled that my eyes were better! (this was a few months ago and I am still unable to get the steroid weight back off. Gah!)
Optho sent me to a neuro-optho in the big city.

I have been to the neuro optho twice now and go back again in June.

What they are telling me is this: 
Stay off the steroids. (they said the steroids make the eye disease drag out longer)
Let the disease run it's course and burn out. (can take from 1 to 7 years)
Then surgery to repair.

Meanwhile, I see my local optho monthly to keep testing the pressures to make sure my optic nerve is not in danger.

Now, I was not willing to settle for this diagnosis and lack of treatment at all on my first visit there. Neither was my local optho.

I just had my second visit with the neuro docs 2 weeks ago. I now better understand their course of non-treatment as treatment, and have the knowledge that they will not let my eyes become permanently damaged. I am under close surveillance by my local optho and frequent checks with the neuro docs to keep tabs on things.

They said studies are showing that the radiation is not necessarily actually helping and that exposing the head area to the radiation is not a good health move either.

I am told that things will get much worse before they can make them better.

I know how bad this sucks. If things get to the point of being so bad for me that I need to be rushed into a surgery to save my eyes, I will definitely let you know. But now at least I feel that I have several docs watching over me to ensure that my best interests are being cared for.

Do keep in touch and hey....be strong.


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## dlo1725 (Oct 30, 2011)

Prairie:

How bad were your eyes on a scale of 1 to 10? What were your initial symptoms and how long did it take for your eyes to worsen?

I have lid swelling, glassy red eyes and some pain. Eyes also tear alot yet they get very dry. The optho started me on steroid eye drops which provide some relief however I am have been told that these drops cannot be used long term due to side affects of the drops.

My eye disease kicked in October of 2011 and I had my first optho visit in December. The doctor said, on a scale of 1 to 10, I was a 1. In early February the doc stated my eyes were getting worse (especially the left eye) and I reported some double vision.

I am curious to know what I should expect going forward. I have had the eye disease for 6 months and understand this could last for a long time, or not.


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## Prairie Rose (Nov 17, 2011)

Hi there,

Me eye symptoms began (to the point of where I was noticing them), last spring.

Constant tearing, watering, irritation....like there was dust in them or something. 
My lids began to swell....the entire area around my eyes begain to swell.

I went to my regular eye doc and she said allergies.
Well, I bought that diagnosis at first because A), I live in the country on the prairie B), I have horses and ride C) we had major flooding of epic proportions in this part of the country last spring and there was a lot of water around creating mold

I could barely drive my 25 miles to work without wiping the tears continually streaming down my face.

The double vision started in the fall, right around September.

By then, my eye doc insisted I needed new glasses and that it was still allergies.

Then I went to the walk-in clinic on my lunch break. The medical doc said allergies.

I finally got in to my regular MD a few weeks later and he instantly knew it was NOT allergies.

My eyes ona scale of 1 to 10 are around a 5. Double vision is constant. 
Redness, irritation like sand, streaming and dry both. My son tells me my eyes are not closed all the way when I am asleep.

My eyes are slowly getting worse, as the neuro opthos tell me they will. They said until this goes into remission there is little that can be done.
I did get a stick-on prism lens for my glasses--and promptly removed it. HATED it. I got instantly motion sick with it on. I do better seeing double. 

Be sure your optho is keeping close watch on the pressure on the optic nerve. That is what needs to be watched.


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## Flywithcoffee (Sep 22, 2011)

Dlo1725,
I have had TED for over 2 years now. Mine started exactly how yours is. Luckily, I did not get double vision. I had mild protrusion of both eyes that is now back to normal. I still have some pain and some swelling around them and I experience some dizziness due to the muscles being tight around them sometimes,but they are a whole lot better now. They actually look almost normal again. I do have good days and bad ones though. It is a terrifying disease and I wouldn't wish it on anyone. It will get better, but will take some time.


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## dlo1725 (Oct 30, 2011)

Flywithcoffee:

Great user name by the way.

Were you treated for your eye disease in any way? Do you or did you smoke?
I have good days and bad days as well and I can't figure out what triggers cause the bad days. I do smoke but have cut back dramatically as my optho said that the healing process is slowed by this nasty habit.

I am deathly afraid of my eyes getting worse.


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## Flywithcoffee (Sep 22, 2011)

Dlo1725, thanks! I always fly with coffee! Lol! I have never smoked and I am very health conscious, I exercise a lot. I did have a terrible experience with the reformulation of Armour. I completely threw my thyroid off by switching medicines too much. Then, when I was over medicated with Cytomel is when the eye Disease came about. I could never figure out good days and bad days either. The one thing I have noticed lately is if I don't eat too much then my eyes get better, is that weird or what? Since I wrote that post, I have seen a huge improvement in my eyes. They are really looking normal and feeling normal again. This also seems to have happened about 2 and a half months since my last raise in Synthroid. Stay patient! It will get better! I would stop smoking though because everything I have read says it makes it worse. Take care!


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## hyperinnyc (Apr 18, 2012)

Hi All,

I've had HED for about 9 months now and hyperthyroidism for a year. My HED happend literally overnight. I woke up one morning with swollen eyes and have been dealing with it ever since. They are bad. I have heavy protruding eyelids and bags (which are my eyeballs poking thru my face) under my eyes. From the side I have 'circles of redness' or donuts as I call them around my eyes. I am miserable about my appearance.

My eyesight has rapidly deteriorated from 20/20 to 20/80 in just 3 months. I just got glasses.

On the brightside at least I can close my eyes and if I dont sleep it looks a little better lol!

The doctors cannot do anything for your eyes. 
They can give you things for them to feel better (steroids - which can make you gain weight or eye drops) but nothing cures it. There is no known cure or reason that your optic nerves swells and pushes your eyes forward. Doctors are grasping at straws to explain how it will get better. Either it goes away or you have to have eye socket surgery for your eyes to fall back into place.

Hyperthyroidism SUCKS.

Has anyone had a thyroidectomy? Is it true that it makes your eyes worse? Or anyone had orbital decompression surgery?


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## JellyB (Apr 18, 2012)

Hi hyper,

I am in the same position with my eyes. No idea whats happened, its mainly one eye and atm its a slight protrusion. I hear that having the thyroid removed or killed could help the eyes settle back to normal.... i think? I hope some of the more experienced members wont mind giving us valuable feedback and reassurance.

ty.


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