Graves' Disease Support Group

Graves-Basedow disease is a medical disorder that may manifest several different conditions including hyperthyroidism (over activity of thyroid hormone production), infiltrative exophthalmos (protruberance of one or both eyes and associated problems) and infiltrative dermopathy (a skin condition usually of the lower extremities). This disorder is the most common cause of...

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/ Graves' Disease Support Group

After thyroid ablation

littlemart
littlemart
I've never understood this one. I had my thyroid killed about 7 years ago and am doing well on Synthroid. My question is: do I still have Graves Disease?? I've read that ablation does NOT "cure" us of Graves and that we still have the disease after ablation. And what about surgery? Do we still have Graves if we have surgery?
mmztcass
mmztcass
Hi:

Most likely yes. The TSI thyroid antibodies can stay high for many years for some people who went the RAI route. Elaine Moore, the thyroid expert I refer to many times, is something like 28+ years post RAI and still has positive thyroid antibodies. Having an RAI makes one hypO taking replacement meds and still have GD antibodies.

As for the surgery, it depends on the TSI, if there were some present prior the surgery, getting a TT does not guarantee a complete zero antibodies as some thyroid tissues are still present. Thyroid tissues are impossible to get it all out.

Elaine Moore can be researched at: elaine-moore.com

{{{hugs}}}
mmztcass
mmztcass
P.S. Elaine mentioned somewhere in her forum (in response to a poster's Q) that studies show it can take 30 years to get the TSI antibodies to come down from the RAI.
littlemart
littlemart
mmztcass Thanks. I think I've read some of Elaine's things on the net. So how do we know if we have these antibodies? Which test should we ask for? And really... does it matter?

I'm doing well on Synthroid, but I have many autoimmune diseases which cause a lot of the same symptoms as Graves or hypothyroidism. So being fatigued could be because I have MS ( most likely ) and might not be thyroid related. Very confusing.

Didn't you and I meet in the Gastritis group? How are you doing?
mmztcass
mmztcass
Hi:

Nope, never have been to the gastritis group. :-) I am doing as well as I can be.

As for the thyroid antibodies, yes it does matter which ones are ordered for the type of autoimmune thyroid disorder one has presently.

I would ask for the TSI and TRAb to see how these are doing for having had GD.

What kind of MS symptoms do you have? I have other autoimmune diseases as well.

{{{hugs}}}
littlemart
littlemart
mmztcass I don't think I could begin to list all my symptoms of MS. I've had this for a lot of years and was recently taken off meds because they stopped being effective and were giving me some strange side effects. When I finally was diagnosed back in 2001 I was having trouble with a numb face, dizziness all the time, leg pain and the most extreme fatigue I could imagine. The fatigue has never stopped. Also had insomnia non stop and still have that. I've had bouts of pins and needles, balance problems and some cognitive problems. There are a lot of "invisible" symptoms and tons of strange phenomenon that goes along with MS. I am still walking, which is good. But the fatigue really slows me down and limits me. Now I have many autoimmune diseases, including Graves. Try to get a MRI and be done with the mystery. Although some people never get a real diagnosis. MRI's can be tricky. For me that was all it took. One MRI and I was sent directly to a neurologist who dx it right away. But I was having problems for 15 years prior to that. Hope you do NOT have MS, but it's kind of a relief to finally know what's going on.