[kaicee118]

#1019752

After more than a year of double vision, eye fatigue, droopy lids, etc, my ophthalmologist just called yesterday and said my recent eye orbits CT scan shows changes indicative of Thyroid Eye Disease. It’s mild, but it’s definitely there.

I don’t know why, but this rattled me more than anything else they’ve told me in relation to this disease. I guess I don’t know how and/or if I can stop my eyes from getting worse. I can live with them the way they are now, but I’m terrified that there will be deterioration. So – with the right doctors watching out for me, can things be stabilized and might they even be able to reverse what’s already there? I know these are questions for my doctor, and I will ask them – just curious what you all have experienced.

Thanks!

[DianneW]

#1073847

Was this your first CT scan? Do I understand correctly that you’ve had TED symptoms for over a year, but just now are receiving the official diagnosis?

If that is the case, then you may not have to worry too much about deterioration. Most of the time, eye changes occur for anywhere from 6-18 months and then stabilize into what’s known as the "cold phase". Stabilization of TED is more likely to occur if thyroid levels remain in the normal range, especially if hypothyroidism is avoided.

Other than keeping thyroid levels as normal as possible and avoiding all cigarette smoke, there’s nothing a person can do to affect the outcome of TED. It’s a disease with a life of its own. I understand how helpless this knowledge makes one feel. I handled it by deciding to cope with today’s trouble’s today, and not worrying about tomorrow’s (over which I have no control anyway).

There aren’t a lot of ways the ophthalmologists can tell when the hot phase is over except in retrospect, noticing that the eyes haven’t changed for six months or more. After that, for most people there is some degree of improvement over a period of time, but seldom a complete return to normal, except in very mild cases.

Some of the TED manifestations are more likely to improve without surgery than others are. Your doctors can give you an idea what to hope for in your case. It’s usually possible to reverse most of the problems one way or another, even if it takes surgery to do it.

[kaicee118]

#1073848

This is my second CT scan – the first was one year ago, and the eye doctor said for that one, he may have seen some very very slight abnormality, which he might not have even noted if he didn’t know I had Graves. This year, he said there were changes – still not severe by any means, but definitely consistent with TED.

I’m usually pretty good with my medical history, but I can’t say for sure when the eye symptoms started. I think I started noticing very subtle changes in spring/summer 2007, but everything really solidified in my mind when I saw a neurologist (they were working me up for myasthenia gravis) in early 2008 and he had me look in all directions, following his finger, and I realized how often I was seeing double when I did that.

I am going to see yet another specialist (!), an "orthoptist", regarding my double vision, soon. In the meantime, I have an appointment in March to see a surgeon about a thyroidectomy. Would having the thyroid removed have any effect, positive or negative, on my eyes?

Thanks.

[Ski]

#1073849

Having your thyroid removed won’t have any affect on your TED progression, but as Dianne mentioned at first, the fact that your symptoms have existed for some time is a good indicator that you’ve probably seen "the worst" of it. An extremely low percentage of TED patients have the worst possible symptoms, and they usually come on rather quickly.

If it’s any consolation, one of the doctors who spoke at a conference a few years ago indicated that through autopsy records they have determined that ALL Graves’ patients have some indications of TED, but not many have symptoms that show outwardly.

The overall path of the disease usually takes between 1 and 3 years to "finish," and so if you had "tiny" changes a year ago, and "slight" changes now, the likelihood is that you will NOT have the worst symptoms.

TED is an autoimmune disease, just like Graves’ (they’re separate, but connected), so reducing your stress levels can help you feel less symptoms. Whatever works for you is perfect ~ hot baths, funny movies, walks in the woods, yoga, etc. etc. etc. ~ just try to remember that you cannot remove ALL stress from your life (that would be so boring!), but you can choose to react with less…. severity, if you understand my meaning. It’s not always possible, so this is not about halting ALL possible stress reactions, it’s just to say that everything you do to TRY and relieve stress will be a help.

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