Graves Eye Disease, Swollen Eyelids

[dearthyroid]

I have Graves' eye disease, not bulging eyes. Mine is swollen eyelids. My vision is blurry and it has worsened over the course of three years. My thyroid eye specialist said that there is a thickening of my muscles behind the eyes. I get double vision and extreme sensitivity to light. If I'm in the sun too long, even with sunglasses, I see bright white spots. I'm wondering if anyone has the same Graves' eye disease I did, swollen eyelids and what the prognosis was?

[stella5349]

Just moving this up again for additional comments.

[Smilerdeb]

I think yr eye Doc has you pointed in the right direction. I wouldve done exactly what he/she says and yes I have heard of the eye drop vials though they are under another brand name here in Australia.
All the best and keep posting...after all, we are all here for each other.
Take Care
Debbie

[dearthyroid]

Thank you, my dear. I appreciate that a lot. I will keep you posted. I just might take you up on that.

I appreciate your advice, too.

[ChitChatNine]

You can even go one step further and use something that is preservative free if using on a long-term basis ... one-time use vials you toss .. I cannot, though, recall the name made by Baush & Lomb, etc.  They are very costly but wanted to throw that out if you have any issues with the inert ingredients.  

I had to use preserv. free once when I had a very bad viral keratitis!

I know the Comm Ldr of the eye care community if you need any other input in that regard, too .. she knows alot and the community has a certified Dr. on it, too!

C~

[dearthyroid]

Thank you for your insight and suggestions. I'm seeing my eye doctor on Monday or Tuesday. he's been measuring my eyelids for the past year and so far they are unchanged. We'll see what he says this time because my vision is worse.

much of what TM514 and smilerdeb wrote are things I'm experiencing. Tm514, my specialist said I might need orbital decompression surgery. I'm hoping I don't have to go that route. However, it is refreshing to hear that you've had no problems since having the surgery.

Truth: I'm so freaked out about losing my vision. It's less impaired than it was two years ago, but still impaired by blurriness and double vision.

Also, question: sometimes do you feel like you have to shake your head a few times to get your focus back? Does anyone's eyes hurt when they move them up/down/left/right?

My eye guy called me last night and suggested I get genteel eye drops (4x a day) and genteel eye gel to apply at night before I go to sleep. Has anyone tried this?

Thank you everyone for your input and advice. I really appreciate it a lot.

[ChitChatNine]

Welcome to the Thyroid Disorders Community!  This is a wonderful place to gain, get, give advice and lend a hand to those in need.  Our community is like a fence; it is built post by post and our fence will never be finished until we all are healed.   WELCOME!

Cheryl - Co-Community Ldr., Thyroid

[tm514]

I had a little bit of swollen eyelids, but more of the usual symptoms of Graves Eye disease - eyelid retraction, eye bulging, lots of tearing and a gritty feeling.  It is all caused by a fatty type substance being deposited in the muscles behind the eyes.  Sounds like you have a good ophthalmologist already, that is am important step in treatment.  Steroids like prednisone are prescribed by some doctors in an effort to shrink the muscle tissue, but my doctor didn't take that route.  I had orbital decompression surgery on both eyes, and another surgery to correct the eyelid retraction.  I am very pleased, and have had very few problems since.  

That's not saying you'll need surgery - everyone's Graves Eye disease takes a different track.  If your symptoms become worse, call your doctor so he can monitor the changes.  Good luck to you.

[Smilerdeb]

Hi

I have had the swollen eyes (i thought was hayfever first off) and dry eyes in the morning sometimes when I wake up.
The last few weeks I have noticed my eyes go pink for no reason.
I remember when I was very HypeR at diagnosis, I had the white 'flecks' in front of the eys thinking my blood pressure was too low or too high and an episode of double vison.
This settled over time (last 8 months) whilst on ATDS but the eyes still go pink every so often.
They reccommend that you get on predisone so I would see your Doctor for it to be checked and if needed, prescribed.
Hope thats some help to you.
But my eye problems havent worsened and I have had Graves and Hyperthyroidism for about 4 years and only diagnosed last year when it got severe and my FT3 and FT4 very high..

[stella5349]

bump up for response.

I unfortunately have no experience with TED - hopefully someone will shed more info with a bump.