A Life Recovered: I Fought The Medical Establishment And Won

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

I Could Have Killed Someone

I Could Have Killed Someone

If you want to know your past, examine your present conditions. 

If you want to know your future, examine your present actions.

- Buddhist saying

I woke up this morning ready for a fight. The slightest provocation might have set me off. More than that may have resulted in such rage that I would not have hesitated to do anything--absolutely anything--to end the irritation. I felt ready with every fibre of my being. I was in control of my emotions, or so I thought, but only because nothing came along to provoke me.

Not long after, I had fed our cats, made coffee and was sitting sipping and chatting with my wife when my strange mood vanished as quickly as it had come.

My life testifies to my devotion to non-violence, even to the extent of allowing myself to be beaten up psychologically and emotionally sometimes because I refused to fight back. I won't even fight back with words because: (a) you can never win an argument with an irrational person; and (b) I will never have a battle of wits with an unarmed opponent. In this case, I didn't have an opponent, to my great relief, after the fact.

Why, I wondered, had I experienced this sudden rage with the potential for violence? As a student of human behaviour, I required some introspection. Does a devil hide within me, as some religions might claim? Did I experience a moment of temporary insanity, a defence argument used in some murder cases in courts in the USA? I didn't care for either explanation. Something else was going on inside me.

Something had made me, in effect, a different person for a short period of time. What could do that? And why? As I pride myself in my ability at mind control (over my own body), why had that ability failed me when I needed it most? I really didn't like that other person. That other person would have been a social pariah. That person was dangerous. That other person was me, but not me. I was, briefly, my own anti-me.

The explanation for my temporary antisocial behaviour revolves around imbalances in brain chemistry. In my case, perhaps in untold others who are behind bars or in psychological confinement facilities today, has to do with my adjustment to a new level of thyroxine supplement for my hypothyroidism. Under the careful watch of an endocrinologist (a specialist in hormones), I hasten to add. (Those inside institutions may not have been so lucky.)

Each of us has a thyroid gland which produces a hormone that somehow affects (gives orders to) almost every organ of the body, even including the skin and the brain. As a thyroid ages, it may produce less hormone than it used to, or it may produce more if it gets out of whack. Producing too much hormone is called hyperthyroidism, which is not pretty, not comfortable, in fact it can be terrifying.

Family doctors have an "average" range of acceptability (as "normal") in results of blood tests of the thyroid stimulating hormone. In general, a patient's TSH level may be brought within range by prescription medication. Low thyroid prescription is nothing more than a supplement of what the thyroid should produce itself.

What I learned the hard way is that a supplement that brings my TSH level into the normal range causes my body to react as if I am hyperthyroid, the opposite of what I am naturally. As I said, that's terrifying because it messes with brain chemistry. My family doctors for years had said "You must test within the normal range, if I give you a supplement that is too low my medical certificate could be at risk."

When I could no longer stand the symptoms of hyperthyroidism (Google it to see what they are, grit your teeth and hang on when you find out) and my doctor refused to back off my prescription, I refused to take any supplement. I quit cold turkey. A few weeks later my doctor became so upset (this guy's going to kill himself this way) that she hurriedly secured me an appointment with the specialist.

The specialist said "It's okay to not be normal." The heavens rumbled, the earth moved, the sun finally dawned. Not being normal is okay? Every doctor I had met before this said that I must be made (with medication) to conform to the norms. Now this expert was telling me it was okay to not be normal, that we are each different in how we react to things such as medications.

The specialist started me on a low dose of thyroxine supplement and raised it each week for a month, then let it level off. It was still well below what a family doctor would have prescribed. Adjusting to a new level of thyroid medication can take from six to eight weeks because so many parts of the body have to agree to not misbehave, to react inappropriately. That includes the brain, which counts on signals from the thyroid before secreting its own proteins which affect many parts of the body.

The brain also controls itself. My "not normal chemically" brain has fought the change in thyroid messages kicking and screaming. In practice that meant the equivalent of waking nightmares or anxiety attacks in the second half of my time in bed each night. By morning my wife might have coffee with the normal sweet husband she knows or she might wish I was still a bachelor in transit to Mars. Neither of us had any way to know what I would be like each morning.

In my bad state I had a hair-trigger temper, flying into a rage over the most insignificant matters. They even included errors or oversights I had made myself. My "stupidity" at something insignificant I had done caused me to be angry with myself (and none too quiet about it either). Sometimes I wished I would not have to live out the rest of my day. That's serious.

I won't bore you (or over-excite you) with details that deserve to be confidential. Let's just say I never became physically aggressive or violent, nor did I become verbally abusive. Loud and nasty, yes. Let's also say that the bad moods never lasted more than a few hours at most. Let's add that I hated myself every second I suffered with the bad mood because I was incapable of acting like the me I knew myself to be. I knew I was out of control, but lacked any ability to change myself.

People with faulty thyroids do not carry around flags advertising the fact so others can see them and recognize a person with a problem. Many with a thyroid problem may know nothing about their problem. What's worse, even a person whose blood tests show their thyroid level to be in the average or normal range may be anything but, in the real world. Medical tests are guides, not laws by which we all must live.

As my endocrinologist said, "We will find the right level for you, for your life." Good. The adjustment was hard. Too bad it didn't come 20 years ago when I was first identified as hypothyroid.

Norms and averages in medicine are for textbooks, not for people. In real flesh-and-blood cases such as you and me and those we know and love, each of us is very different. "Unique" would not be an out-of-place descriptor.

If you believe you are different from the norm from a health standpoint, speak up to your doctor. You don't live in a textbook. You live inside your own skin (your doctor doesn't). You want to continue to do so for as long as possible.

That may mean you have to tell your doctor you believe he is wrong, that you need different diagnosis and treatment. The doctor may need to see the same things, but differently. It may mean seeking other medical opinions. It may make you somewhat unpopular with your doctors, who have their own biases to cherish and dogma to follow. Too bad for them, not you.

Remember, your doctor does not live inside your skin. You do. Try to keep it that way.

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 grow children who develop socially and emotionally in healthy ways, as schools rarely address those developmental needs.

Learn more at http://billallin.com/