Hashimoto's Encephalopathy is a very rare condition associated with Hashimoto's Thyroiditis.
I am part of some Facebook HE groups and just happened to find this group while doing some reading. I don't have a formal dx but I fit the "diagnostic" criteria with 10 years of elevated TPO (never in range), 10 years of abnormal EEGs showing diffuse slowing, an LP positive for protein (clean catch, no blood), and a lot of the characteristic symptoms of relapsing/remitting HE. Just wondering if this site is active?! Anyone out there?
My 11 yr old daughter was diagnosed July 09 with HE, after 3 seizure like activities; 1 in April 09, 1 in May 09, 1 in June 09- each putting her into a coma for 3-4 days and needed to be put on a ventilator. Her diagnoses came from a Fellow at the Cleveland Clinic. In June her TSH and Microsomal antibodies levels were elevated and she went through the IVIG treatment for 5 days with another 5 day tapper of the Prednisone. Today we learned her TSH is at 5.55 and Microsomal antibodies are 808. Both of these numbers are higher than when she was diagnosed however the doctor is not going to do anything except increase her synthoid (not sure if I spelled that right) . I am very confused by this. Wondering if that is what is typically done? Or should I be looking for a different doctor? Any advise will be deeply appropriated. Thank you , Luddie
Hello, I am 55 and have been diagnosed with HE for about 4 years. I seem to have the relapsing remitting type which has given me 4 major flare ups. I am currently in the midst of the 4 th. My symptums are mostly cognitve. I get lost in familiar places, can't organize my thooughts ect. I also become incontient, have mini strokes and. Lose my balance and sometimes can't walk at all. I get jerks all over my body and drop, knock things over and throw things. I am being treated at Ohio State University Medical Center, neurology felt in Columbus, Ohio mostly with high doses of Prednisone and have started on Imuran this tar also. I am Registered Nurse working in home care (when I can work) and have done and continue to research this nasty little disease as much as I can. There is a little bit out there you just have to get on the net. If I can help in any way I will be happy to share what I know.
I m trying to find out as much as I can about this sickness , my mother in low has it for last five years and has a very slow progress and if she gets any kind of a virus as flu it takes her back so far that we all cant undersand it!she is on heavy antydepressives and on PRONISON for last 5 years and since a year ago she got major problems with urinary infekcions!I m trying to reach somebody with simular problem so we can exchange our informations and experiences in order to help eachother fighteing this teribille disase!
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