[Anonymous]

#1104029

Hello bobo,

Just a couple of comments for you — first, the eye disease follows its own path. The doctor at the last conference called it “capricious,” I believe, meaning that it can start at any time, and the thyroid levels are irrelevant. It is actually a separate disease with similar (but difference) antibodies, so treating the thyroid does not do away with the possibility of the eye disease. Go see an opthalmologist and they can tell you what’s going on (as Bobbi notes, hyperthyroidism can cause SOME eye symptoms, so telling the difference is best left to a professional).

As far as being normalized on Synthroid, it is always possible that circumstances will change and your dose will need to be adjusted from time to time. And sure, a small dose change can cause a big change in your blood levels. Also, changes in activity, stress and age can make a difference in how much thyroid hormone you need to have to feel normal, so I don’t think any of us can say “that’s it, I’m done, this is my dose for life.” We will all be checked regularly, even if it’s just once a year, to make sure our dose is still effective for us.

Hope this helps! Good luck to you!

-Ski
NGDF Assistant Online Facilitator

[Anonymous]

#1104030

Ski – thank you for the reply. I realize changes happen with aging etc, I just hadn’t pictured that they could be acute or as frequently as 6-8 weeks down the road. More patience is in order apparently as well as more dollars to the medical establishment. Its a shame there’s no “home” TSH test to at least eliminate concern and racing off to the doctors office.

As to the eyes, is TED technically not Graves disease? Thanks for taking the time to answer.

[Anonymous]

#1104031

The eye disease is caused by antibodies, not by levels of thyroid hormone. And antibody levels are not affected by thyroid hormone levels. I recommend that you go to an opthamologist if you have concerns about your eyes. They are a good source of support and information, as well as being able to watch for dangerous types of changes that might (but usually do not) occur.

Bobbi — NGDF Online Facilitator

[Anonymous]

#1104032

Right, TED (Thyroid Eye Disease) has been renamed because it does not occur only with Graves’ disease patients (it used to be known as Graves’ Eye Disease, and some doctors even still refer to it as such). It does seem to be associated with thyroid conditions in general, but thyroid levels have no effect on its progression.

I know it’s confusing…..

There are some great bulletins from the NGDF on the eye disease — information is power!

-Ski
NGDF Assistant Online Facilitator

[Anonymous]

#1029839

I had RAI in Feb. and went hypo 12 weeks thereafter. Initially I was at .100 which got me to 5.9 TSH and that was then changed to .112 dose about 6 weeks ago. It seems to me now that my eyes are beginning to bulge on the upper lids again. I had assumed that with normal thyroid that my eyes would be normal also. Is this not so?

Also, just for curiosity, would a change from .100 to .112 make one go all the way from 5.9 to lower than .32 hyper again?

Any feedback is (and always has been!) appreciated. I really thought I was out of the woods and settled into permanent normalcy with synthroid, but perhaps not.
Thanks.

[Author]

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