Alex shares her experience with Hashimoto’s Encephalitis

May 4, 2018

My name is Alex and I live in Toronto, Canada. I was diagnosed with Hashimoto’s Encephalitis in April, 2017.

It’s hard to pinpoint a specific moment when my symptoms started because the onset was very gradual. In late 2012, I was working on my master’s degree. One evening in November I stayed alone at my boyfriend’s apartment when he left to attend a friend’s party. I did not join him, saying that I had to study. The main reason was really something else: I chose not to go because I sensed that he would be ashamed of me in front of others.

This thought about my inferiority became quite obsessive. I stayed alone and tried to continue reading a textbook, starting to feel lightheaded. The concepts discussed in the book were slipping away. The room seemed too dim and I turned on a table lamp, but a sense of darkness continued. Suddenly a sentiment of dread and claustrophobia came over me. Time had stopped and everything outside the room had ceased to exist. The space of existence was becoming smaller. There was also a tremendous sense of loneliness. It was a primal fear of being isolated from the tribe; it was paralyzing. I did not know how to explain what happened and I thought that it was due to staying alone.

As I continued with the graduate program, I started to have episodes where I would feel very overwhelmed, with a loss of identity. Panic would creep in as I would become convinced that others were not aware of my existence. Also, I was experiencing abdominal and muscle pain, dizziness, inability to concentrate, and ‘brain fog’. My face had visibly swelled and I was rapidly gaining weight. I had so many symptoms that it was very difficult to describe them and visits to the doctor did not result in answers.

In the summer of 2015 I was still in graduate school. At that point I was quite confused about what I was doing there and started to have frequent episodes of intense crying for hours. Everything seemed wrong – the university program, my relationship, living in another city. I would become quite violent, throwing things around the room in rage. Sometimes I would become extremely agitated and collapse on the floor, unresponsive. Eventually I left the graduate program and my boyfriend convinced me to go to a hospital. For three days I was a patient in a psychiatric unit and then was referred to a psychiatrist.

First, I was diagnosed with major depression and took mirtazapine. I managed to find a job but had continuous terrifying experiences of thinking no one knew that I exist, disassociation, and complete brain fog where I could not make any decisions or comprehend information, with episodes of rage. Also haunting me were delusions where I felt extreme emotional pain upon seeing older women; I thought they were telling me that they wanted to die but the society was forcing them to live. I continued to have episodes of tremors and going into an unresponsive state. Later I also had a seizure.

Even though I had the above-mentioned physical symptoms, the psychiatrist was set on the diagnosis of schizophrenia and treated me with antipsychotics. Antidepressants were also continued and at some point, I was on 5 medications. This combination clearly did not help because soon I lost my job.

My mom was very upset with the service of the psychiatrist. She started to do some research herself and came across articles about psychosis in patients with elevated thyroid antibodies. I had a blood test done and turned out that my antibody levels were high. Given these results, I was able to refer myself to a neurologist. I also started the autoimmune protocol diet. I did improve and was able to go back to working full-time. Once examined by a neurologist, I was diagnosed with Hashimoto’s Encephalitis in April 2017, and finally treated with IV steroids in December 2017. I have not experienced any seizures or tremors since the treatment and I don’t think I have had any violent outbursts.

There is still a long way to go but I am very happy to have received a proper diagnosis!

Many thanks to Alex for sharing her story from Canada.