[scanders]

#1060439

So, my eyes have flared up horribly. Swollen, red, looking more “bulgy” than usual, and sore. Per the eye doctor last week, OD is back on the table as a strong possibility. Vision isn’t worse as far as acuity, but the double vision, of course, is still there. Since I can only rely on occlusion or blurring now to stay in single vision of any kind, I don’t know if that’s worsened. My thyroid levels are within the normal range, but at the very, very bottom, per labs from yesterday.(I would say hypo for me.) 5 weeks ago my FT3 was slightly elevated, and my FT4 was about mid-range.

What I don’t quite understand is how, if eye changes don’t necessarily parallel what happens with the thyroid levels, why do I seem to have big eye changes every time my thyroid levels move more than a point or so up or down, but especially down? I think the eye changes have something to do with the antibodies, but this is where I get lost. (Did I mention I’m struggling mightily with brain fog at the moment, too?) What causes the antibodies to increase? The low thyroid levels? Even if they’re not technically “hypo”? Is it just random? Or is it some other process altogether? And, any suggestions how to stop this roller coaster? The MMI was reduced again, although minimally as the endo is worried I’ll quickly return to hyper. I do think the thyroid levels need to stabilize for my eyes to stabilize? Or not, if thyroid and eyes run separate paths? Can anyone direct me to any articles to explain this? I think if I understand it better I can deal with it better, rather than getting all depressed about something I probably can’t change.

Thanks,

Christy

[Kimberly]

#1182627

Hello – These are all good questions, but there are unfortunately no easy answers.

Antibodies do play a role in TED; some (but not all) docs believe that TSI is correlated with the activity and severity of TED. However, it’s not a perfect correlation. You can have patients with high antibodies and few signs of TED, and others with lower levels, but significant TED.

Thyroid hormone levels also play a role, but again, not a perfect correlation. Patients who are hyper or hypo are at greater risk for TED, but some patients with TED have normal thyroid levels – and some have *never* had thyroid issues prior to the TED diagnosis.

Some patients also find a correlation between foods/beverages consumed and severity of symptoms. If I eat a high sodium meal (for example, at a chain restaurant), I’m guaranteed to wake up with extra swollen eyes the next morning. Others have reported this same effect with alcohol.

The GDATF’s YouTube channel is a great resource on thyroid eye disease; there are a number of videos from ophthalmologists:

(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).

https://www.youtube.com/user/GravesAndThyroid/videos

The International Thyroid Eye Disease Society also has good info on the “What Is TED” tab of their website:

http://thyroideyedisease.org/

Hope this helps!

[snelsen]

#1182628

All good questions, I guess. But TED is pretty much managed by treating the symptoms.

And I did not care about any of the questions or the answers. Not about antibodies, not about thyroid levels, not about meds. To me, they are different processes, with a different path.

I think the main thing is that YOU ARE MISERABLE! The strabismus surgery will help you so , so much.

This is really condensing it down to the here and now, but you might as well have another opinion to go with your thoughts and Kimberly’s good references. The bottom line is, nobody really knows. And if they did, I’d still go with my symptoms, be so so glad to get rid of my double vision. It is hell.
Shirley

[scanders]

#1182629

Thanks, Ladies! I’ll check those links out. It sounds as if this is all clear as mud. But, it gives me something to thing about other than how miserable how I am. (Yep, no getting around the fact that I am absolutely miserable at the moment. Ever overhear someone comment that “she looks like a bug-eyed frog”? While it might be true at the moment, it was still hard to hear.) But still, not sight-threatening, just comfort and appearance are affected.
I think what’s also difficult is that no matter what I learn, there’s no way to speed up the process toward the fix. I just have to wait. The symptoms are treated as well as they can be at the moment. But for me, learning as much as I can makes me feel as if I’m doing something, even if it can’t/won’t change anything.

[Kimberly]

#1182630

scanders wrote:

Ever overhear someone comment that “she looks like a bug-eyed frog”? While it might be true at the moment, it was still hard to hear.)

Wow, that was a truly hateful comment. Hopefully, you were able to explain to the person what you are dealing with. I remember that a doc from Shiley Eye Center mentioned at one of our educational events that TED gives whole new meaning to the terms “Patients” and “Patience”!

[Author]

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