[Ski]

#1062434

Hi Renee,

It’s very normal for TED to affect one eye more than the other ~ I know it’s no fun and it seems so capricious (and uncomfortable, and disturbing, and all those things), and we can tell you that there’s light at the end of the tunnel, but (as with all things Graves’), it is something you must be patient about. Typically TED has a very rigid disease course, with certain defined phases (I can’t go into them right now, but do a search on "hot phase" or "cold phase" in this BB, either should give you at least one post that defines them both), but it can take 1-3 years to completely finish its phases and leave you in a position to consider whether surgical repairs are necessary to bring your eyes back to normal. The surgical techniques have been refined over the years, and you definitely can pursue anything necessary after the TED is "done." People who smoke cigarettes have the longest period of time before they’re "finished," and quitting at any point along the way will result in a more positive ending (proven through multiple studies), so if you do smoke cigarettes, please try to quit.

Graves’ Disease, TED, and prebitial myxedema (the burning shins) are three aspects of one "syndrome," they’re beginning to say, meaning that these are three diseases that happen concurrently to a lot of people. They happen along with each other (though not every GD patient gets the other two in a noticeable way), but treatment for one does nothing to predict the disease course for either of the other two. They flare up and calm down at their own whim.

Sorry to say that your doctors are absolutely right ~ there’s no way to tell what’s in the future for any of us, no matter what treatment we choose for our thyroids. The one thing they can say for a PRETTY certain fact is that your thyroid is gone and can no longer render you hyperthyroid, but that’s about it.

Oh, and after you’ve gone through TED once and reached the cold phase, they can say for a PRETTY certain fact that you’re done with it, as far as changes occurring.

Stick around, I know lots of people will have supportive words for you!

[ReneeLee]

#1018053

Hi,

I had a total thyroidectomy in June of 2010, been diagnosed with TED and being monitored by a neuro-opthamologist, as well as an endocronologist. Every day my eyes are changing. One eye is much more effected than the other-is this a normal progression? My doc tells me every case is different??? Also, my endocronologist is still trying to find the best level for my thyroid meds. I’m so frustrated….it seems like everytime I turn around, more of the graves’ symptoms are returning-my shins have started burning again. It’s very concerning….seems like no one really knows how a person with graves’ will fair after a thryroidectomy-or am I just asking the wrong doctor?

Thanks in advance for your response.

[snelsen]

#1062435

Hi Renee,
I have TED, and written a lot of posts about it. Look up my name, snelsen. Also, as Ski said, put TED in the search box. You’ll have a lot to read! My TED happened many decades after Graves’.

It sounds like you are being followed by docs who know what they are doing, both endo and neuro-opth doc. Both TEd and Graves’ are terrible stressful, and both take a long time to see the light at the end of the tunnel. But all will get better.
TED is still ruling my world, and that is why this email will be short. i just had a surgical procedure today, and I am SO ready to go to bed, even though anesthesia was only local this time.

Happy to write more some other time. You will find this site is absolutely a lifesaver, as you are having these experiences.
And it has marvelous facilitators and reliable references. I am sorry that you ended up with Graves’ and TED, sorry that I did too! The good thing is that it does sound like you have excellent docs. A must.

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