[Ski]

#1074880

Hi Amanda,

We are not extremely clear on triggers for TED ~ as with all autoimmune diseases, stress seems to play a part, but nothing is completely proven.

As far as trauma to the eye triggering an escalation of TED symptoms, that is known ~ the difference is that people with active TED can experience an escalation in symptoms after surgery, but people without TED don’t typically begin to have the disease after eye surgery.

That may just be semantics for Graves’ patients, because doctors have found that ALL Graves’ patients have some level of TED symptoms (tested post-mortem), whether we notice them or not.

The good news is that only a tiny percentage of TED patients end up with symptoms that require surgical correction down the line. For the most part, we suffer a period of symptoms that dissipate over time, and for the most part, the symptoms are mild. Let us know how things work out for you ~ your case is interesting.

[Amanda]

#1019898

Hi all,
I recently found out I have TED after being euthyroid for eight years (I was treated with meds) with no eye problems. My eye symptoms started happening after I had eyelid surgery. Does anyone know more about injury to the eye being a trigger for TED.
It’s been a really "interesting" experience healing from the surgery and having TED at the same time…trying to keep my sense of humor about this.
Thanks,
Amanda

[LynneB54]

#1074881

Good morning,

This post is really for Ski. I wanted to thank you for a previous response you sent about seeing an ophthalmologist rather than my regular optometrist. My eyes continued to get increasingly dry and I was having some weird pain in my left eye, so I went in last week for an appointment. Fortunately, the doctor couldn’t see any problems with my eyes, although he agreed they were very dry. He had no explaination for the pain I sometimes have, but was definate that he didn’t see any eye changes, and didn’t see any cause for concern. He’s actually a friend so I trust him when he tells me not to worry. This was a great relief, so thanks for the advice, Ski! I probably wouldn’t have gone without the post from you. The doc recommended some OTC eye drops and they are working very well. Relief at last!

I sure hope everyone feels as well as possible and stays safe and warm for Christmas.

Lynne

[Ski]

#1074882

Thanks Lynne,

For letting us know that we help. ” title=”Very Happy” /> I’m so glad you have found relief, physically and emotionally!!!

[Amanda]

#1074883

Ski,
Thank you for your reply and insight. Now I am wondering if I was one of those people who had TED without realizing it and the surgery aggrivated it to the point to make me painfully aware. Just wish I had been warned of the risk before the surgery.
Amanda

[npatterson]

#1074884

Amanda,
I don’t think there would have been any way to "warn" you. You apparantly didn’t have enough eye signs for the surgeon to suspect TED. Did he/she do a pre-screening on you and did they know you have Graves’? One point I frequently try to make is that once we have Graves’, we always have it, even if we think we are in complete remission. If you wrote that you take thyroid hormone (that is usually an anesthesia question), but didn’t say that you have Graves’, no one would suspect any problems.
Stay involved, and keep us posted.

[Amanda]

#1074885

Hi Nancy,
I did inform the surgeon about my medical history with Graves and how it was treated, etc. They had me do a blood test. My thyroid levels came back normal and he said I was good to go for surgery.
So a week after I was off the predisone prescribed for the recovery from the surgery I started having big trouble moving my eyes. Also one lid was lagging, one was retracted. The surgeon sent me right away to the ophthamolgist, he thought I may have been having a brain hemorage or tumor. I was pretty scared needless to say. The ophthmologist was perplexed by my problems until I told her my history of Graves and said I was having classic symptoms of TED. She sent me for an CT followed by an MRI. Had more bloodwork done. Found I had some elevated anitbodies but everything else was in normal range.
The radiologist didn’t see anything obvious on either scan and then we were all really confused. Went to my amazing endo who referred me to an ophthamolgist who had expertise in TED. He looked at my scans and said "yep, you have TED". He saw some muscle enlargement, probably not obvious to the radiologist.
I’m just trying to figure this out, while I’m waiting for things to get better and hopefully not worse. I can’t believe I could be the first person this has ever happened to,but then again the more I learn about TED the weirder it gets.

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