[Kimberly]

#1066025

Hello – I picked up a great book on the eye disease at last year’s GDF conference. The authors cited a study that found that antibody levels "could be used in at least some patients to indicate prognosis." Since this doesn’t sound very certain, you might check with your doc on his/her opinion of whether the predictive value would be worth the expense of the test.

The authors do state that cigarette smoking and hypOthyroidism increase one’s chances of having more severe eye symptoms — and patients who smoke are less likely to respond favorably to treatments like radiotherapy or steroids.

[snelsen]

#1066026

Hi, thank you for your response. I don’t smoke, and I am not hypo. I would LOVE to take an action that would limit the course of TED, but I know everyone would like that. I have been receiving too much levothyroxine for many years. But of course I began taking it in the first place after a subtotal thyroidectomy for hyperthyroidism. After many years of being euthyroid, labs said I needed a bit of the med. But I was kept in a hyperthyroid state for many years, probably cause too much med. TSH always .003, .02, area. Curerntly reducing the med, also take cytomel. I really don’t think it makes any difference.
I am always cold, always tired, but this does not fit with my labs.
On top of all of that, I have TED. I find TED almost too much right now. Being so photophobic, having acute double vision, feeling almost spacey when I walk b/c of vision issues, is a lot of stuff. I sure appreciate this site. I wonder if two years from now, I will have been in the cold phase, had my strabismus surgery and the eyelid surgery? Seems like hot phase is going on FOREVER!!!!

[snelsen]

#1018615

My TED was formally diagnosed a year ago. I am sure i was in an active phase before that, but I kept getting a new RX for glasses, thinking that was the problem.
This is a discouraging time, for my eyes were a bit "better" meaning that my double vision had improved, and I did not have to throw my head back to see one object. Now it is worse again.
If I had another antibody test, would it give a hint if I am getting better or worse, ie. if the lab result is higher (bad news)
or lower ( good news?)

[Kimberly]

#1066027

Hello – Unfortunately, no one can predict how long your active progression will last. I’ve seen one study that said that 18 months was an *average* amount of time for the symptoms to continue worsening…although the study was fairly dated, so someone else might have more current information. Again, keep in mind that this was an average…your experience might be different.

As for the surgeries, one of the docs at last year’s conference says that he prefers the patient to have one year of stability (i.e. symptoms not worsening or improving) before doing the decompression surgery. Then he preferred to wait another 3-4 months between the decompression surgery and the eye muscle surgery.

I’m sorry you are having to deal with all of this. Do you have a support group in your area…or have you had a chance to attend one of the GDF conferences? It’s always inspiring to see people who have been through the full cycle of TED — and now look and feel fabulous!

[Kimberly]

#1066028

Just an additional note on smoking as a follow-up to my previous comments:

I had an off-line discussion with another member about the fact that there are no studies that have *specifically* evalutated the link between smoking cessation and improvement of Thyroid Eye Disease. It’s true that the studies generally focus on smokers vs. non-smokers rather than FORMER smokers vs. CURRENT smokers. However, a 2009 article in "Clinical Ophthalmology" stated that, "Smoking cessation is mandatory in all phases because it worsens outcome and represents a modifiable risk factor."

So smoking cessation is recommended, even though there isn’t a *guarantee* that quitting smoking will improve one’s outcome with Thyroid Eye Disease. (Of course, as we all know, there really aren’t ANY guarantees with Graves! ” title=”Very Happy” /> )

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