Hashimoto's Encephalopathy
 

Anyone heard of this? My sister is very ill and is going to the Mayo clinic to be evaluated and discuss treatment .

I'm sorry. 😢 I did do a quick google and it sounds very serious. Prayers. 🙏🏻

Yes she is very ill

Jean, it's one of those diseases where you go through the entire list of what it might be, and find out it's not, and this is what's left.

It's a serious form of Hashimoto's thyroiditis, where the thyroid cycles back and forth between being hypo (low levels of thyroid hormone) and hyper (excess levels of hormone).

Except, in the case of the encephalopathy, the thyroid itself seems normal, but the antibodies to the thyroid are present, as with the usual symptoms.

Your sister has a very good chance of recovery, over 80% recover with steroid treatment. And, as with many other diseases, the majority of people who are struck with this disease are women.

You and your family are in my thoughts.

Yes they have pretty much ruled out other things. She has done so many steroids that they too are having a bad effect on her body. They want to consider some sort of immunotherapy. She has no thyroid it was removed.

It sounds like there are no easy answers to this one. High levels of steroids can result in a hormone resistance.

I suspect lower the inflammation would be key to getting things back in balance. My best to all of you.

My sister needs someone per the Mayo Dr. to fly out to the hospital with her. She and one non medical person is eligible for free airfare. Has anyone done something like this before, will we be able to sit together on the plane?