# thyroid stare what is it really?



## Mojito (Jul 18, 2014)

I have some thyroid eye symptoms and have been seen by some ophthalmologists/experts. They've told me pretty much that I'm lucky it's not worse and they don't really step in and do anything unless it is severe anyway. So what do I pay them for? Anyway I have a very minor amount of proptosis in both eyes though there is the tiniest bit of white showing below the iris but not above. This bit of white was not there until this last month as I seem to be having a flare up. Still it's not that bad right??? Yet, I can see when I look at my eyes in the mirror I do look like I'm staring and my eyes have this glassy look to them. I've been getting odd reactions from strangers in public for a long time now like there's something odd about my appearance, but everyone is too polite to say what it is.... The whites of my eyes are reddish all the time like I have a hangover and I have puffiness like I've been crying, so maybe that's it? I wear glasses now when I don't have to to try to hide it, whatever "it" is that people are reacting to. Anybody got ideas?

Edited to add - changed the bit about the white under the iris after looking again.


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## Andros (Aug 26, 2009)

It would appear that you may officially have Grave's Disease! Are you being treated for a thyroid problem and if so, how?


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## Mojito (Jul 18, 2014)

Hi Andros, yes unfortunately I do have officially have Graves disease - diagnosed three years ago. Guess I should put that in into the post or my sig. I'm stable on methimazole still hoping for remission but I didn't expect to still be affected by the eye problems this far into treatment. I'm always between two reactions, one thanking God it's not worse and the other being so frustrated that I have the problem at all. The thing that nags at me is wondering whether the changes in my eyes are enough to affect others perception of me negatively.


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## hyperinnyc (Apr 18, 2012)

Hi Mojito, sounds like Thyroid Eye Disease to me. Did the opthamologist suggest steriods or anything to 'stop it in its tracks'? I've read about this as a measure to help TED not get worse. My TED came on literally overnight so I couldn't 'stop it'. I woke up one morning looking like I had been crying - puffiness, redness. Then full blown STARE. Suprised, scared, excited, crazy eyed, shocked whatever you call it lol. Three years later they are still puffy on the top lid and you can see the white above my iris even though I've had one fat decompression surgery already on my lower lid and tried every natural remedy out there. The redness has gone away as I've calmed down - no longer hyper due to a TT and 'relatively' stable on my replacement med.

Opthamologists can't do anything. The only thing that changes TED is surgery or a miracle spontaneous retraction, they just won't say that cause they want your money again when they reschedule you to come in in a couple of months 

Good luck to you!


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## Mojito (Jul 18, 2014)

Hi Hyperinnyc, I'm so sorry you've had to deal with this too. I've had trouble getting straight answers out of these docs - like how fast can it come on? What you describe is pretty darn fast! You must have been so freaked out. So it sounds like "the stare" is defined by having upper lid retraction and one can't have the stare without that? Then why are people lookin' at me weird.....

I also wonder about thyroid antibodies and TED. I know they are supposed to fall fast after a TT - have you had yours tested since then? I recently saw my endo and asked for a TSI test and got turned down cold, not sure how hard i want to push it though.

Anyway, I sure hope as more time passes from your TT that your eyes will improve. You've paid your dues!


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## Andros (Aug 26, 2009)

I hate to hear about your eyes. The only way to stop the progression of the antibodies attacking the eyes is thyroid ablation. This means surgical removal, not RAI. RAI can make the eyes worse.

Let us know how you are doing and what you are doing regarding medical help. I cannot say I am happy that your doc "refused" to run TSI.

And do see a Board Certified Ophthalmologist about your eyes if you have not done so.


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## JasonJay (Oct 27, 2013)

i had really bad TED when i let my graves get completely out of control, i looked like a completely different person. But thankfully mine has calmed down and retraced back to almost normal. Im very thankful for that. My eyes are still a bit bigger than they once were but i would say only maybe 5% bigger than they were originally where as when they were full blown TED they looked about 30% bigger, i kid you not! my right upper eyelid was barely visible and my left under eye was completely swollen on the outer edge.

I never had TT or RAI and never will, just got my numbers down to a normal level finally and im on a low dose maintenance dose of Methimazole and my TSI is near normal.

What i did take was flaxseed oil, and i also used MSM eye drops several times a day. Perhaps this helped? not sure but worth a try. But i do know that it takes years for eyes to go back to normal from these extreme changes and damage done by graves.antibodies once the initial attack phase has passed.


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## Lovlkn (Dec 20, 2009)

Mojito



> stable on methimazole


I'm curious as to what dosage keeps you stabilized?

Can you share some recent labs?

I had the "wide eye" with white all around the iris and avoided having my photo taken for several yerars. Once I went onto anti thyroid medications ( and was kept hypo) my eyes went back to almost normal. Since my total thyroidectomy I have not had any issues with my eyes.


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