TED SUFFER FACING RAI OR SURGERY, WHICH TO HAVE PLEASE HELP

[Vampire2013]

hi ive got TED and i am facing the choice of surgery or RAI and i am told the RAI will possibly make my TED worse , and also do not like the fact of putting in my body a radioactive substance but the other option is surgery has anyone out there had to face the same decision whilst suffering from thyroid eye disease who can offer their experiences please so i can make the right decision for me.

[shambles]

Sorry to hear.

Firstly, I am surprised they are offering you RAI if you have thyroid eye disease as this is not usually offered as it is well documented that RAI will likely aggravate your eye disease. I wanted RAI but due to my eye disease they would not even discuss the option.

Radioactive iodine can worsen active Graves’ orbitopathy,

especially if the patient is a smoker, but the worsening can

be prevented by the use of steroids. Using a “block and

replace” approach to treat the hyperthyroidism until the

eye disease becomes inactive may allow radioactive iodine

to be used to treat recurrent hyperthyroidism without

concern that it will worsen the eye problems. Further

studies are needed to confirm this very interesting study.

thyroid.org/documents/ctfp/...

Are you seeing an ophthalmologist for your eyes as they should be advising against RAI. They should also be your primary care and not your endocrinologist. They should suggest what meds you are on prior to and after any thyroid ablation. It would be likely that you should be on steroids prior to any thyroid operation to minmize the effect of surgery.

Finally, are you sure that you do need your thyroid distroyed or remove. Have they done everything for you to help you achieve remission?

[Keeleye]

I have graves & TED, I have just had a TT as I wouldn’t have RAI because of the TED, it’s a bit early days but I feel so much better already & my bad TED eye has gone down a little I think.. no shooting pains since surgery.

I wouldn’t have RAI treatment with TED but that’s just my opinion

Best wishes

[Keeleye in reply to Keeleye]

Ps. I am taking selenium 200 that the eye doctor told me to since my 1st appointment