A Life Recovered: I Fought The Medical Establishment And Won
Many stories [of critical medical problems] are so complex that they demonstrate both positive and negative aspects of [health] care. Hopefully all will serve as inspiration for either what needs to be changed or what is possible. – from Privileged Presence: Personal Stories of Connections in Health Care, p. 10, Liz Croker and Bev Johnson, Bull Publishing, 2006
My fight did not take place at a national level, with a medical college of physicians or a big pharmaceutical company, but with local doctors where most of us have to negotiate the welfare of our personal health. Standard blood test results, and the resulting drug prescription they suggested, made my life not worth living.
While I went along placidly with the prescription I had been given for nearly two decades, my pleas that “Something is wrong here” went unacknowledged. My blood test results were “normal” and that is what mattered.
When I committed to stop taking my prescription totally, and my test scores soared as a result, suddenly my personal welfare became of primary concern. The doctors thought I might die and they would be fingered for the blame (and expect litigation to follow). Only then would they refer me to a specialist.
My body is naturally hypothyroid (low production of thyroid hormone). A high TSH (Thyroid Stimulating Hormone) level on a blood test causes a doctor to prescribe thyroid hormone thyroxin (usually harvested from the thyroids of slaughtered pigs, as I understand it) to correct the level and bring it within standard bounds of acceptability. Fair enough, at one tiny pill per day it was not an inconvenience.
I was told to take the thyroxin pill first thing in the morning as taking it later in the day might affect my sleep. This increased metabolism effect is critical to the story. Eventually it became intolerable.
After several years at the same dose, with each blood test showing my TSH within acceptable bounds, I began to feel less and less comfortable in my own skin. In 2010 I realized that I was suffering from symptoms of hyperthyroidism, too much thyroid hormone. Not conditions I would wish on anyone.
The most disturbing change in my composure was a marked decrease in patience and tolerance of petty actions by my wife. I became hard to live with. Over a period of three years I saw two family doctors, two psychologists and one psychiatrist (to see if he could prescribe something more effective at settling me down than standard beta blockers and downers offered by my doctors).
When I self diagnosed myself as hyperthyroid, I went to a doctor to see if my thyroxin prescription could be lowered. I was told, in no uncertain terms, that it could not be changed because that would put my test results outside the normal range. “I could lose my licence,” one doctor said, if she prescribed something that caused my test results to be outside the normal range.
Out of frustration and concern that I was putting a huge burden on my wife, making her life miserable in the process, I made the decision to stop taking the thyroxin altogether. For a couple of months, I felt better than I had for years. And I acted better.
Then I took another blood test. In a panic, the doctor got me an appointment with an endocrinologist. My TSH was so high that the doctor feared my organs would stop functioning.
Over the next year, the endocrinologist started me on a very low dose of thyroxin, then raised it until the dose was just below what the previous dose had been when I stopped taking it. When the blood test results showed my TSH still too high, she wanted to raise the dose again. I swore that I would stop taking the thyroxin again if she force me to the higher dose. Standoff.
While discussing the situation with a friend who had been hyperthyroid, whose thyroid was subsequently killed by medication and whose hypothyroidism was now under control with thyroxin, he happened to mention that when I took my thyroid pill on the day of a blood test greatly affected the TSH results. He said I should take thyroxin six hours before the test, instead of the usual three hours on a normal day. He had gotten this tip from a thyroid guru in one of the top hospitals in Toronto.
Next blood test I took the pill earlier and my TSH results dropped dramatically into the normal range. No change of prescription, just a change of when I took a single small pill on the day of a blood test. My family doctor and endocrinologist were ecstatic, judging by their physical reactions when they discussed the situation with me.
More than a year after my dispute with the doctors, I still suffer unpleasant symptoms associated with my body adjusting to a changed dose of thyroxin. I have reason to believe that the symptoms will vanish when my body eventually adjusts.
My previous dose of thyroxin, that was too high and resulted in symptoms of hyperthyroidism: 150mg. My new dose that makes my TSH test results come out normal and my doctors happy: 137mg.
That tiny difference made a family doctor refuse to change my prescription for fear of losing her licence to practice medicine (due to TSH test results that would have been too high).
Why could a lower TSH result on a blood test result from a lower thyroxin level (normally the two should change inversely)? All that changed was that I took my thyroxin pill two hours earlier on the day of my bloodwork.
Considering how common thyroid problems are among people today, you might think that doctors would be on top of such matters of fine tuning. They are not.
As always, I am ultimately responsible for my own health. You are responsible for your own. Doctors are in the middle trying to figure it all out. They don’t have enough information to work with to make decisions that will benefit us most.
We may pay a price to fight the medical establishment, but if we are right our lives will be better for it.
My wife is much happier living with a calmer and more tolerant husband.
Bill Allin is the author of Turning It Around: Causes and Cures for Today’s Epidemic Social Problems, a guidebook for parents and teachers who want to help their children develop in all ways, to live well balanced lives.
Learn more at http://billallin.com