March 27, 2019 |  Juliet Jimenez
 

I found a local endocrinologist at the request of my neuroimmunologist, Dr. Vernino at UT Southwestern. (The FP holistic nurse practitioner I was seeing seemed to be confused about my medications, and they weren’t working at all. My TSH (thyroid stimulating hormone) was extremely high on T3 with T4, so she said she would change them, but didn’t.)

My first visit with the endocrinologist was discouraging. He wrote the whole time I was there and rarely looked at me. He appeared to be skeptical and disinterested in hearing about the idea of autoimmune encephalitis. When he asked me about my seizures, and I explained that they seemed to be temporal lobe seizures, he interrupted me and told me to just tell him in ‘my own words’.  (I was doing this — I forgot that some doctors get irritated when the patient has some medical background!)

I told him I was seeing Dr. Vernino, a specialist in the field of autoimmune encephalitis, and he said mockingly, ‘I’m gonna have to talk to THIS guy.’ He said my TSH was high, and that he was going to give me a higher dose of synthroid than what I was currently taking to see if we could drop it down. He was brisk and impersonal, but I hoped the medications would help.

Fast forward to the next visit. The endocrinologist was warm and attentive. He asked lots of questions about my symptoms, said the higher dose of synthroid was working a little too well, and decreased it some. He made eye contact when he spoke.

He then confided in me that he had a patient with thyroid disease who had become practically comatose, and they hadn’t been able to find out why. He didn’t elaborate, but from the change in his attitude, and the fact that he took the time to tell me about his other patient, I suspected that he HAD called Dr. Vernino, and had learned a few things about AE. He had obviously seen a connection with the patient he mentioned, and his eyes had been opened to possibilities of treatment that he had never considered before.

It was a rare and amazing experience, and I think I’m in good hands now.

 

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Driven by the knowledge that “Education is Power”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.

 

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