Did anyone have RAI with TED?

[cbread]

I have mild Thyroid Eye Disease and after two years on methimazole am going to kill this damn thyroid. I have heard RAI makes TED worse, but my very well respected eye doctor said if I am a non-smoker RAI is possible. It could result in a temporary flare up, but no long term worsening.  Has anyone with TED had RAI and can you give me your input.  Mild TED is bad enough, there is no way I would risk making it worse...but full on surgery is also quite an ordeal.  So trying to weigh the pro's and cons of RAI vs TT.

[Smilerdeb]

What are yr levels?
And are you on any meds?
It would help a lot if you post this info.
It took me 5 weeks to go Hypo.
Post here and maybe I can help you.

I have Graves, was hyper, had RAI, then TT due to thyca 2008

[pmsou]

My endo told me she would have never recommended the RAI if I had any symptoms of TED because it makes them worse.  She didn't go into detail and I am a smoker so I don't know if it only applies to smokers.  I told her I had slight symptoms of TED but no bulging.  My eyes were watering excessively and they hurt all the time.  She didn't beleive this to be associated with TED.  I know.  I had the RAI on april 1.  I'm still showing signs of hyperthyroidism.

[Ericamegan]

The Opthamologist called me back after discussing this more with a few other drs. and gave me the choice to go on prednesone before the treatment. I will take them for 2-3 months. He said it's a somewhat high dose & will have side effects, I think I am going to take them anyway.  

[Ericamegan]

I have mild TED and my Dr. & eye Dr. told me to wait and see if the RAI treatment makes my eyes better!  If not, then they will give me something. I've read so much online about having it treated beforehand. I get RAI next week.  Hopefully my eyes don't freak out. I don't understand why there are so many dr.s that no so little about TED.  I called 10 Opthamologists and none specializes in TED. ugg...

[penguingal]

I have the same problem. The 5 doctors I've talked to said RAI is safe even though I kept telling them all the scary risks I've found out from the net. One told me not to believe too much on what you see online. Sigh..