Hi Maglady, I have TED, not everyone gets it, you can be hypo and hyper and have it or not even have graves or signs of hypo or hyper and get the TED, it can occur later or even after you have rai or have your thyroid removed and get TED,.. it's a pain. I had 1 eye buldge for a month and then it was fine. I had slight headaches and watery eyes (most people have dry eyes). My vision was messed up for about 6 months, but ok now. I am going to the eye doctor tomorrow but should go to a specialist to look behind the eyes. my isn't that bad.. THere is a group for TED: http://www.dailystrength.org/groups/thyroideyedisease

No thankfully, everyone doesn't get the eye disease but this is my biggest fear as well. The good thing is it's usually temporary and once eye symptoms calm down, you can have the issues corrected through surgery. Check out the pics "dairytech" put on her personal page- that will help you understand what can happen. Believe me, I'm just as scared as you are!

No thankfully, everyone doesn't get the eye disease but this is my biggest fear as well. The good thing is it's usually temporary and once eye symptoms calm down, you can have the issues corrected through surgery. Check out the pics "dairytech" put on her personal page- that will help you understand what can happen. Believe me, I'm just as scared as you are!

I've had Graves' Disease since October, 2003. I do not reallu have TED. I just have dry eyes that seems to go hand-in-hand with my cycles every month.

{{{hugs}}}

OK, thanks. I've knoen people who had it terrible.

How do I find dairytech's personal page?

Maglady, just click on dairytech's profile (such as a response from her, then go to her personal page) and you'll find all of the photos. I just love her- she is soooo brave to help the rest of us.

Maglady, I am going to look this up but I think that less people DO GET TED than DO NOT. In other words: There is less chance that you do get it.

Also, dairytech, I think, had a severe case. Not all symptoms are that severe.

I do not have TED and I have not really looked into it in depth. Mostly what I know is what I know from this board. And there is a lot of wisdom here to reduce your chance that you do get TED or worsen it.

Hey, did you know that factors playing a potential role in aggravating/inducing GD is stress? Physical or emotional? What worked/works for me to reduce stress in the GD context is to not worry about what can be. First try to get a handle on what is current for you: First, understanding the basics and your meds. Try to find out about symptoms that you already have and how they are part of the GD. Second, but also very important: try to understand your lab values and what they really mean and expand your knowledge to what other labs could be useful and which ones are sort of useless or old fashioned.

It's like our jobs: first when we start on a new specialty, we are overwhelmed. But we will first learn how to read a basic EKG before we can recognize complex cardiac issues. It's the same for your new disease: understand the basics and slowly you will automatically run into other stuff. Try not to worry about the TED if it isn't an issue yet. You can also get hit by a bus tomorrow but you do not let that possibility take the best of you either. I absolutely not try to minimize your fear (gosh, been there done that) just try to tell you what works for me.

And I would say: Do NOT check out the pictures at Dairytechs profile LOL. Just look at her avatar and what a beautiful pretty lady she is!

Nathalie

I don't think it's necessarily inevitable, but it is something that you don't really have control over.

I have eye problems whenever my levels fluctuate too quickly or whenever I'm feeling hypo. For me, this pretty much means dry, watery eyes, and sensitivity to light. Both problems can be mended with a little bit of extra TLC-- eye drops, more rest, and a good pair of sunglasses.

Other than that, I've had really mild proptosis in one eye-- its slightly more raised than the other-- but people really don't notice it and it doesn't inconvenience me much. It was a pretty big blow to my self esteem once I noticed it, but I looked at pictures from last year and noticed that I had it even then. When several months passed and it didn't get worse, I figured it really wasn't anything to stress about. Btw~ no double vision here.

I really wouldn't worry too much, its more important to concentrate on healing.

Maglady...I just went through corrective surgery in March. I now dont have double vision. I still have one more surgery to go. Since they had to cut and adjust my eye muscles...the reconnection has pulled my lower lids down farther than they were. I'm waiting to have my lower lids raised.

I had an accute case of TED. Mine happened all within a month...my pics show the dates. This is very rare. Not everyone gets TED. The thing to remember about TED is...it has a beginning a middle and an end. Its a process and eventually works itself out. It burns itself out. Intervention is reserved for the sever and like in my case..the accute. If you have TED...having a good Opth as part of your team is a wise move. I highly recommend getting the book of TED by Elaine Moore...I followed her advise in the book and got great results. I credit her for my remission. Even if you dont have the signs of TED it would be a great read because...you just never know. If you have Graves you are susceptable.

Hugs Von Von

The medical community really dont know why some get TED while others dont. They do know that certain triggers are common with those that do have it. I had read recently that they are working at identifying the antibody responsible for it...if they do...a simple blood test will tell if you are a candidate to develope it. Thats very exciting. Big Hugs...Kathy

ps..I'm not on my own comp and this one dosnt have spell check so I'll appologise now for any mistakes...lol

My eyes have been dry at times (I wear contacts though) This happens more to me if I am more hypo, not hyper. I asked my doc about TED and she said it's when your levels go up very high, very fast, usually. I think mine went up gradually at first.I also think like dairy said, it depends on the antibodies.I think if you don't have it at the beginning it's not as likely later on. Sometimes people that go hypo get swollen looking puffy eyes,but not really protruding. Also smoking can really make it worse and smokers have more of a chance of getting it so the info says.

only a small percentage of Graves patients also get eye disease. I have it . I didn't have surgery, My dr. put prisms in my glasses and all is rosy again. I have been dealing with this since 1991. I watch for updates and don't worry. I deal with the symptom and hope for the best. good luck to you

Last night I spoke with a very nice and encouraging woman in KY. A friend of my mother in laws, who didn't mind if I called her. She was diagnosed with GD in 1985, and immediately underwent RAI. She didn't have any problems until 1991 when she said her eyes kept getting bigger and bigger. She had to deal with it for 2 years until they decided the inflammation had stopped. She then underwent occular decompression, and is very happy with the results. She says people often comment on how beautifull her eyes were. So I thought wow, even in the worst case scenario there's hope.

Yes..mine wasnt bad enough to have to get decompression surgery. From what my Opth said...if the drip and Prednisone hadnt worked it may have gotten to the point where that could have very well happened. I'm very grateful that combination worked.

I never had my thyroid tested before so I didnt know what normal was for me. When I had my thyroid storm and my eyes protruded I was only 6 points over the high end of my range. The docs were really confused about it all...I was just scared. Most people wouldnt even know they were sick let alone have a thyroid storm. Everyone is sooooo different. I have a very fine line that I have to balance on to stay well.

As Brans said being hypo also effects your eyes. Since I need my FT4 on the upper part of my range...even mid range effects my eye's negatively...I get all kinds of hypo symptoms. My eye's develop watery bags under them and it takes forever for them to go away once my levels get right. I just hated that. Since I've been in remission and my thyroid has been working properly on its own I havnt had to many problems.

Getting diagnosed with TED is very scary. For me...dealing with TED was far worse than the Graves. TED alters your looks...for me it disfigured me. I felt very self conscious. My eyes were my best feature...or so I was told. But now that I'm on the other side of it I can assure you it is manageable. It does heal on its own to a large degree. There's many things you can do to aid spontaneous healing. Although I was left with double vision at the end of my healing...it was a rather simple operation to fix it. I used paste on prisims for a few years but since the surgery was taken care of by my medical...I decided to go for it and I'm very pleased I did.

For those of you dealing with TED...hang in there...do all you can to promote healing and just know...TED has a beginning a middle and an end...it will burn itself out and you will come out the other end. For me it took 3 years...some may be sooner and some may take longer...but...the sooner you find your best level in your ranges and maintain that spot...the sooner your recovery...Big Hugs...Kathy

So what do you do to keep your levels? Adjust meds, eat only organic vegies? I live in crapdirt Wyoming. Nothing grows here..I'm doomed..if I buy food from Wholepaycheck, then how am I going to afford my big eye surgery..LOL..My eyes are gonna stick out so far I'll be able to see Texas...two times with my double vision...Sorry, I've spent the last month so anxious I could hardly function..I guess I need to make light of this somehow..You seem like a really nice, normal lady, and a valid source of info. So I'm going to follow your lead. Also, how do you mean it affects your eyes if you go hypo? With pain, dryness, Or protrussion?.. I once had a patient in her 60's she had just been diagnosed with Chrone's, and was really sick. I'll never forget, she said "My God, this is the D@#ndest S%^t I ever got into." That's how I feel about this right now.