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Give it to me straight, doc.

What happened to me?

Well, that's a long story. In fact it's long enough to write a book . . .

But today I want to give you a glimpse at what Hashimoto’s Encephalitis did to me.

I started experiencing psychiatric symptoms in late 2020, long before all hell broke loose, but looking at those symptoms alone, no one would have jumped to the conclusion that my brain was inflamed.

I had my first seizure-like episode in the fall of 2021. It came in waves: unresponsiveness, weakness, slurred speech . . . I felt like I was in a dream. When all my test results came back normal, I decided it must have been an isolated event, something I could write off as a “weird day.” Months went by without answers or any more seizures. Over time, though, my thyroid began to swell, putting uncomfortable pressure on my throat. But I had no time to see a doctor for it — I was busy finishing up nursing school, getting a job in the neonatal intensive care unit, passing my exams, and starting orientation as a new nurse.

June 2022: I had an all-too-familiar seizure. And then another one. And another one . . .

I could not ignore these, no matter how hard I tried. This time, when the seizures stopped, I wasn't my old self. My head constantly jerked back, and tremors ran throughout my body.

Suddenly, the hospital became familiar from a point of view unfamiliar to me: the patient’s perspective.

In the simplest words possible: my thyroid tanked. It wasn’t producing nearly enough thyroid hormone for me to function properly. My body tried to compensate by releasing a thyroid-stimulating hormone called TSH. In a healthy person, TSH should be less than 4. Mine was 140.

Since I was a kid, we'd known I had an underactive thyroid, or hypothyroidism. To make up for the lack of thyroid hormones in my body, I had to be on a medication called Synthroid for the rest of my life. Despite steadily taking my Synthroid, though, the doctors said I was now experiencing a myxedema crisis — a life-threatening form of hypothyroidism. They finally diagnosed me with Hashimoto's Disease. We aren't entirely sure when this developed, but my immune system had started to attack my thyroid, driving my thyroid peroxidase antibodies over 900. In a healthy person, TPO AB should be less than 8.

Otherwise, they couldn’t find anything neurologically wrong with me. All my brain scans — CT, EEG, MRI — were normal. The thought was that my neurological symptoms might calm down when my thyroid hormones were replaced by a higher dose of Synthroid. So I waited . . . and I waited . . . relying on a simple dose adjustment and a singular pill to get my life back.

You may have guessed it, but my symptoms did not go away. My thyroid numbers were slowly — very slowly — improving, but my seizure-like episodes got worse and more frequent.

I developed more and more neurological symptoms until I became entirely dependent. On the outside I looked like an entirely different person, but inside I was still there. I may not have been able to control my body, but I was there.

My voice became slurred, my language broken. I experienced foreign accent syndrome and expressive aphasia. I’m a native English speaker, but it sounded like English was my second language, both accent-wise and grammar-wise. This progressed until I could no longer talk at all.

I could not handle much stimulus. Noise, light, talking — all of it was too much for me. I couldn't leave my apartment for months, excluding doctor visits, which really took a toll on me. I didn't see many people besides my boyfriend and my mom, who had become my caretakers. I tried to keep myself occupied with simple things like drawing or television, but eventually everything became too much.

I slowly lost my ability to walk. It felt as if there was a literal disconnect between my brain and my body. Someone had cut the wires. They called my walking stiff, but that doesn’t begin to describe it. Sometimes my steps were exaggerated, and sometimes my feet wouldn’t move at all. My boyfriend had to lift and carry me when I simply became "stuck." I went from walker to wheelchair to gurney . . .

Eventually I failed my neuro exams. My hands wouldn’t squeeze when I told them to, and my feet wouldn’t move as I commanded them. My eyes couldn’t follow a finger waved in front of my face. Sometimes, my facial expressions became asymmetrical, resembling a stroke victim. There were plenty of moments when I couldn’t respond at all.

So, we ran more tests, all of which came back normal. My disease was hiding from the physicians. My diagnosis and treatment seemed entirely out of reach.

Stay tuned for a comprehensive list of symptoms and stories of my diagnosis and treatment.

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