Tuesday, December 07, 2010

The T4 wars - Part 2 - The cruel TSH test

Seven months after Total Thyroidectomy, I was suffering.

Compared to how I felt then, PRE-surgery life seemed pretty good. It had been nearly 10 years since the doctors told me thyroid removal was the only treatment that would restore me to health. Although I felt very well for most of those years, by the time I considered surgery, I was suffering symptoms that caused concern. My thyroid (goiter) had grown so much that it was an obvious lump on the side of my neck, barely covered by my hair. My legs were covered in bumps and so itchy that scratching seemed the only relief, and yet that made them more inflamed. By this time, my legs were scarred from scratching and embarrassing to look at. My quality of thought was problematic. I tended to have racing thoughts, unable to concentrate. I was taking more anti-thyroid meds than ever and, I thought, perhaps they were doing less good. Certainly they were not stopping my goiter from growing. Finally I opted for surgery since less invasive techniques (like Radioactive Iodine to kill the thyroid) would not sufficiently shrink the huge gland.

All of these symptoms were real, the doctors assured me, and would go away with a thyroidectomy.

But all these symptoms, as troubling as they were, could not prepare me for the life-killing treatment that followed, a treatment governed by the cruel medical standard, a measure of thyroid health, called the 'TSH test'

TSH (thyroid stimulating hormone) is a hormone secreted by the pituitary. When the pituitary senses that the body lacks the thyroid hormones, it sends out a chemical message to the thyroid to produce more hormone. Thus, a high TSH reading supposedly suggests that the body is in need of hormone. A very low TSH supposedly suggests the body has enough or even too much hormone.

Key to the interpretation of TSH, is the normal range determined by the lab doing the testing. Doctors believe that, to be normal, patients must fall in the center of the lab's manufactured range.

Before surgery, my TSH was very low. My thyroid was pumping out too much hormone, causing my racing thoughts. Surgery stopped the pumping and for the first few months, I was put on very low doses of replacement thyroid hormone.

At first I felt great. I have heard others say that their brains went on vacation post surgery and that was exactly how I felt: Calm and composed. That didn't last.

By the third month, I had double vision. My hair was coming out in clumps. I was in constant, severe muscle pain. Painfully constipated. Extreme fatigue and exhaustion characterized all of my days and I felt that I was swimming through a dream world. I lost the ability to spell. I lost the ability to use complicated software. Indeed, I lost the ability to make a to-do list or think ahead to the next step in a project. I lost all interest in my appearance, my home, and my work. I was gaining weight (an expected side effect). I frequently felt I could not breathe, though I felt air going to my lungs. I suffered from heartburn. I was freezing cold and I lived with gloves that still could not stop the biting cold in my fingers and toes. I was dizzy and unbalanced. I started to panic at small changes in my environment. I wondered if I had lost my sanity along with my ability to think. And my legs were still itchy.

I was about to discover that, no matter how miserable my post-thyroidectomy world, no doctor would take my misery seriously.


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