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6589573 tn?1382725642

Hashimoto's Encephalopathy Treatments

Hello! I am a 38 year old female who was diagnosed with hashimoto's encephalopathy in 2007. My first symptoms were severe insomnia, followed by uncontrollable convulsions/seizures. I also had hallucinations and aphasia. I could not speak a complete sentence and forgot many words.
I was admitted into the hospital and they thought I might have a mental disorder. Doctors & specialists preformed every test imaginable. They had to put me under anesthesia to do these test because of the myoclonus.
My question is how do I explain to a physician that I actually have this very rare disease?? The diagnosis is in my medical records, but there is no "code" for HE. So they file it under Hashimotos Thyroiditis, which is NOT what I have.  It is effecting any treatment a physician recommends and I do not believe I am on the right meds to help me live a semi-normal life.
Any help would be greatly appreciated! Thank you for your time :)  
2 Responses
Avatar universal
I understand your concern regarding Hashimoto's encephalopathy (HE),  a controversial neurological disorder that comprises a heterogenous group of neurological symptoms. Although it has been linked to cases of Hashimoto's thyroiditis or thyroid dysfunction, there is an immunological feature such as  presence of high titers of antithyroglobulin or anti-TPO (antimicrosomal) antibodies.  A certification from your attending physician may also help clear up the diagnosis in your records. Take care and regards. .
6589573 tn?1382725642
Thank you very much for the info :)  On my next doctor's appointment I will be sure to get these results in my most current files. I have already had all the tests to confirm the encephalopathy (which was every medical test invented & a few that were experimental).
Thanks again!  
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