I've probably posted this before, but wanted to put this out again just in case it can help someone else. About eight years ago, I started having problems with severe fatigue, increasing migraines, and some (mild) neurological symptoms, especially my balance. I also noticed some trouble with memory, concentration, and word-finding. I also had some of the symptoms one would associate with low thyroid function (constipation, hair loss, dry skin, puffy eyelids, hoarseness, elevated cholesterol and triglycerides, hearing loss, etc).
After being worked up several times for MS and other neurological disorders, but with negative results, my symptoms were attributed to depression and stress. Because my TSH and other thyroid hormones were normal, I was reassured over and over that my thyroid gland was healthy...
The fatigue continued to worsen to the point where I thought I needed to start saving up money for a motorized wheelchair, as I felt too weak to get a regular one and wheel myself around. The balance problems led me to use a cane. The migraines were almost daily. Before I got sick, I used to be someone who could hike 8-12 miles and feel exhilarated. Now, just going out to the mailbox wiped me out. Most of my doctors were still calling it depression and stress. They kept insisting that I just needed the correct antidepressant, and therapy. They wrote down in my chart that my symptoms should be treated as "hearsay".
But I suspected that the weakness in my legs was too severe to be just depression, and I knew I wasn't making up my symptoms or exagerating them. One neurologist convinced me that I was neurologically ill, but with what, she could not say. She convinced me to pursue a diagnosis and finally, my 8th neurologist diagnosed me with a rare complication of autoimmune thyroiditis called Hashimoto's Encephalopathy.
HE is diagnosed by checking thyroid antibodies, even if your hormones are normal. Most HE patients have normal hormone levels. I had an ultrasound of my thyroid gland after my diagnosis, and it was full of tiny nodules from the autoimmune destruction. I was floored.
HE is treatable with steroids. After one pulse, the profound weakness in my legs lifted. I still have some residual fatigue and headaches, but am drastically improved. The earlier HE is caught, the better. It can produce more serious symptoms such as coma, psychosis, stroke-like episodes, and seizures. Each case looks different.
I don't know if this will help anyone, but I thought I'd throw it out there. Hopefully it won't take anyone else 8 years and a lot of humiliation to get diagnosed correctly.
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