[Hannah]

in reply to: Thyroid Eye Disease #1061966

Taking substances that "boost" the immune system will also increase symptoms, so be very careful about taking anything like that.

@ Ski

Hi Ski, could you elaborate more on this?
I grew up taking a lot of supplements and vitamins…and still continue to do so (on days when I remember).
Could this be affecting my TED as well?

[Hannah]

in reply to: Help. RAI an option? I have thyroid eye disease too. #1061685

Every visit with the Dr, he wants me to get something (RAI or surgery) done to "control" the thyroid problem.
My Dr emphasized that Tapazole is not favourable for long term therapy. He said the side effects of liver failure, and bone marrow damage. Also he didn’t want me to be "in a situation where you’re cornered" and would rather have me do something now when I have options.

I wonder if it’s because he works with cancer/research? (perhaps my condition is something that might be seen as something that could be controlled easily???)

If RAI is most likely to worsen my TED, it’s making me steer away from that option — which is the only option my dr is giving me.

However, you mentioned that steroids with RAI prevents the eye problem 100% — sounds good to me?
What are the risks/side effects of steroids?

Also.. you mentioned that after RAI, my eye problem MIGHT be fine if I don’t remain HYPO.
(from reading these posts, most people seem to become hypo after RAI/SURGERY)
What is the chances of becoming hypo after treatment (RAI/Surgery) ? — or How long does it take to figure out the correct dosage of meds to NOT be hypo?

[Author]

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