[Alysonrn34]

#1059669

I have extreme paranoia regarding TED. I’m just wondering how it started for everyone? I have had a sinus infection and headache and I’m freaking out. I go to the endocrinologist tomorrow.

Thanks!

[jaqeinquotation]

#1176654

Hi when you say you have extreme paranoia regarding TED. Do you mean about getting it? Or do you have symptoms now?

I’ll share a bit of my experience.
For me it started about 18 months ago(July 2011), I noticed that the creases of my eyes started to swell. By December it was getting out of control and by March(2012) I was wearing prescription glasses and by May, I was wearing sunglasses at work every day (we were actually on strike for 10weeks so I’m sure that the stress and loss of income made my eyes worse) and I started seeing an ophthalmologist by I think August because my eyes have become so sensitive to bright lights, vision seems to be deteriorating and not only were my eyes swollen (specialist “claims” it won’t go away without surgery) but here came the bulging. I’m 2 weeks post TT and the surgeon tried to assure me that my eyes will improve-RAI wasn’t an option for me because I’ve heard and read that it can irritate the eyes anymore and believe I can take anymore irritation. I see the ophthalmologist in 2 wks and we are supposed to discuss surgery options at that time however, I’m a stickler for 2nd opinion- so I’ll be requesting another referral.

I wish I could tell you what to do to avoid this from happening but I can say that not everyone suffers from TED the same way. You may never get as bad as I am but I’m confident that I won;t look like this forever:)

Be encouraged!

[Kimberly]

#1176655

@Alysonrn34 – Mild symptoms of Thyroid Eye Disease can include dryness, swelling, excessive tearing, and a gritty sensation in the eyes. More serious issues can include a “bulging” of the eyes (proptosis) and double vision. If you are having issues, your endo can hopefully refer you to an experienced ophthalmologist in your area, or this site has a good search engine for eye docs:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.asoprs.org/custom/directory/?pageid=3657&showTitle=1

The good news is that most patients will *not* experience the worst of the eye issues, but it certainly won’t hurt to get a baseline evaluation done.

Take care!

[linzyyyy]

#1176656

Alyson,
I am also extremely paranoid about getting TED, and I also have a sinus infection and cold, which is freaking me out! My eyes have been so watery and puffy. This morning I had to put a cold rag on them. Yesterday I used hemorrhoid cream haha! (Whatever it worked.) It’s probably just this creeping crud.

A few weeks after RAI my eyes started to bother me (it was like I could feel them in my head, and they were dry and sensitive to light. Occasionally very puffy in the morning.) One thing that made me feel a little better – I made an appointment with an opthalmologist just as a baseline checkup so we can keep an “eye” on things. He said he didn’t see any signs of TED and that only a very small percentage get the worst of it. When I started feeling better post-RAI, my eyes started feeling better too.

Lindsay

[linzyyyy]

#1176657

Also, it seems every time I have a morning of super-puffy eyes, I remember that I had eaten something super salty the night before! (Usually Chinese food or popcorn) I just remembered that I had the “house” soup from the Japanese steakhouse down the street (like just broth, a few mushrooms and some green onions… that kind of thing.) which I asked my hubs to get for me since I was sick. Duh.

Lindsay

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