# Surgery & Eye Disease



## hyperinnyc (Apr 18, 2012)

Hi All,

I'm sure I asked something similar to this before but...

Who has had eye disease and how has it been remedied? Yes, I know, get your thyroid under control. Ok, then what? Have you had eye surgery? Has it 'burnt out' and gone away without having to have eye surgery? Have steroids worked for you? Has the TED gone away after having your thyroid removed? I'm probably getting a TT in a month or so I am interested to know if this will help at all.

I'm tired of being ugly AND sick :sad0049:

Thanks!


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## msmanatee (Jul 12, 2011)

I have eye disease. My thyroid is not under control, though. I'm taking no med except for glaucoma (acquired by having TED, but fortunately that's rare!). I went on four months of steroids shortly after diagnosis. During that time, docs battled with some recommending TT, others RAI, while the ophthal suggested I do neither. So I tapered off steroids and my eyes did not get worse. They have actually been pretty stable and at my last ophthal appointment I learned that one of them is improving. It had "seemed" as if the other was getting worse. My ophthal is kind of excited about it as the prognosis a year ago was grim. I am fine with having no eye surgery until they have been stable for a year. That's my own personal arbitrary cut off date. I know some people don't wait that long but from what I've read, it's best to be certain your eyes are as stable as possible. You can avoid extra surgeries that way.

I may have to have TT after all. If you do or will have TT, please keep in frequent contact with your ophthal. Eyes can react to TT. Sorry I don't remember more than that. I have been on autopilot most of the past year, just came back to get up to speed.


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## hyperinnyc (Apr 18, 2012)

Thanks so much for responding! I never hear from many people about TED.

Why aren't you on thyroid blocking meds? How are you even making it without them?

I would like to think my eyes are stable. Sorta. One seems to be poking farther out than the other but I hope that is because the other one is going back in lol.

The opthos aren't even recommending steroids or surgery to me. I've seen two 'experts' who look at me, poke me, run all these tests then say 'your eyes will calm down'. I know they may never. Next spring makes 2 years for. If they are not better by then, I'm going to plead for surgery. I'd like to salvage what social life may be left.

I am scheduled for a TT the first week in Nov. I will most likely have to cancel it - my insurance company is trying to get me for pre-existing condition. Damned if I do, damned if I don't.


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## Lovlkn (Dec 20, 2009)

Removing your thyroid and getting stable on replacement can sometimes quiet down TED.

Surgery is recommended over RAI if you have eye involvement.


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