[Amanda]

in reply to: More Eye Questions – driving me crazy… #1073684

Hi Kaicee,
Addressing your work question: I work in sales so I understand the suffering of working in front of a computer and having to make eye contact with people all day long when you have TED. The most helpful thing you can do is keep your eyes wet. I did not understand this until I joined this board. My ophthamologist never explained to me about having dry eyes or what to do about it (I think I was her first TED case). Get good prescription eye drops. Lots of people on this board have recommended Opitvar. I have tried Patanol and like it too. Both work much better than any OTC drops. The other thing that has helped me with working in front of a computer under flourescent lights is wearing a baseball cap, or any hat with a brim that helps cut out the light.
Best,
Amanda

[Amanda]

in reply to: Question About Eye Problems #1073736

I’m glad your son’s eyes aren’t being affected. That’s was my biggest fear when I was first diagnosed with Grave’s, back then I had no idea about the varying degrees of TED severity and I just assumed that I was going to have severly bulging eyes.

A question for Ski: I have been told that once TED resolves it rarely reocurrs, is this true for the most part?
Amanda

[Amanda]

in reply to: Life Situations, Emotions, and Graves’ Disease #1073878

My mother was hyperthyroid in the 1970’s. My father remembers coming home from work and finding my sister and I shivering with blue lips because even though it was winter our poor mother was BROILING! She says she could actually see her heart pounding under her chest. Her doctor’s never called her condtion Graves disease. They just told her she had to nuke her thyroid without trying any other options. Nonetheless, my mother felt better and my sister and I had a happier childhood after that ” title=”Wink” />
Amanda

[Amanda]

in reply to: Will this always be a roller coaster ride? #1074363

Amy,
It only took six months of being on methimazole before my GD went into remission. I remember my endo telling me I had about a 20-30 percent chance of it giong into remission. My experience with Graves wasn’t as severe as it is for some people, so for me it made sense to try the meds first before destroying my thyroid and I’m glad I did.
My thyroid levels have been normal for the past eight years, but I have recently acquired the eye disease which has been more difficult for me to deal with than the abnormal thyroid levels ever were. I’m waiting to see what happens with all this and will probably reconsider disabling my thyroid if goes wacky again.
Best, Amanda

[Amanda]

in reply to: Omega3’s for TED #1074863

Susan, I have tried lots of different drops most of which seemed to make my eyes more dry. I have been using Genteal ointment at night, it works, but it’s a bugger to put in. I will try what you are using. Thanks!

[Amanda]

in reply to: Omega3’s for TED #1074861

Thanks Cathy!I knew to watch out for mercury in the fish oil, but I didn’t know that about the vitamin A in the fish oil.
I will make sure to check the labels and manufacturer for which part of the fish the oil comes from.
Amanda

[Amanda]

in reply to: TED Triggers? #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.

[Amanda]

in reply to: TED Triggers? #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

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