The T4 wars - Part 6 - Words mean nothing

I told my pleasant, new endo, the Happy Nigerian, that I felt fine, though I was suffering. My previous Endo, C Kurt Alexander of Muncie IN, had threatened to let me die before he would change my treatment. My GP showed me that she would play along with the Endo. I felt trapped with no choices: I had to comply and that meant stop telling them I had no hypo symptoms. I would then get the hormone I needed to live.

So I said I was fine and the new endo took another TSH test.

This time, the TSH test, taken one month after my 'normal' test, showed that I was hypo.

I laughed to myself when the doctor's nurse called up with the test results. She said the new endo was raising my dose of T4. Surely a patient's words do mean nothing. Telling a doc I was sick meant nothing. Telling a doc I was well meant nothing. Only the TSH test, which had proved to be something of a moving target, was to be believed.

I started to feel as if I were running out of time. I might not survive another six months in search of a perfect dose. I took the new dose of T4, but every day I also added another sliver of a leftover pill, adding what I guessed to be about 25 mgs more T4 than prescribed.

After two weeks on the new (and padded) dose of T4, my muscle pain was nearly gone. I was still in a fog and still felt as if I were walking through and breathing syrup. And now I started to be fearful about my next doctor's appointment. I had put myself at the high end of the accepted T4 dose. If my next TSH test showed a dip into the normal range, my T4 dose would be cut again. I would again be in agony, not just fog.

Now I had to ask: Is there anywhere else for me to go? Any other choices? Could I doctor shop or was there an alternative.

The T4 wars - Part 5 - How are you feeling?

My new doctor - whom I named in my head 'The Happy Nigerian' - looked at my old blood test results and made noises of understanding. While examining me, he said casually, 'How are you feeling?"

How was I feeling? I had barely dragged myself to the appointment. My husband drove; I slept as much as I could. The air was syrup and I was trying to breath it. I had suddenly developed double vision. I was freezing cold. I was fragile... that was a very strange part. Subtle changes in my body and environment made me anxious and panicked. FRAGILE? ME? Impossible! No one, meeting me for the first time, at least PRE-surgery would EVER think I was fragile. And yet I was so fragile I couldn't choose between three options (two I might have a chance); could not drive; could not bear emotion in the people around me. Suddenly I was incompetent in my own world.

A couple weeks earlier, I told the Endocrinologist C Kurt Alexander of Muncie IN how I felt and he raged at me: How you feel has nothing to do with me! You have a symptom, go see your GP! You will die before I prescribe (another treatment)!

And I did go see my GP who, to my astonishment, played along with the Endo, pretending that I had suddenly become mentally ill or, as an alternative, I had a brain tumor. To my doctors, I realized with real revulsion, nothing I was feeling was acceptable to them. To my doctors, I was cured and functioning normally. The TSH tests said I was 'in normal range' and my doctors now embarked on a mission to convince me that the way I was feeling had nothing whatsoever to do with my thyroid hormone levels.

On these doctors, I was dependent for my very life, a reality Alexander had put a fine point on. I would die without their treatment, however ineffective it was or how sick it left me.

So now, when I heard my nice new doctor ask me " How are you feeling? " I played along.

"I am fine."

The Happy Nigerian gave me a satisfied 'Good' and ordered a TSH test.

The T4 wars - Part 4 - Standard (and cruel) therapy

After the Endocrinologist C Kurt Alexander told me I would die (and he would presumably let me) before he prescribed another thyroid therapy, I went home to suffer -- but also search for answers.

In desperation, I searched the Internet for information on thyroid treatment, for any glimmer of hope that I would ever feel better. I learned that there are two main thyroid hormones T4, the hormone that stays in the body for a long time, and T3, a short-lasting hormone that is actually created by the T4 hormone. It is the T3 hormone that has much to do with metabolism and energy.

Patients suffer, that's the way it works

Like all patients, I was being give synthetic T4, in low doses that the doctor would raise ever-so-slowly, until finally I would fit inside a 'normal range' on a test called TSH. Patient suffering is understood to be a part of this treatment, a medically approved cruelty probably unequalled among modern medical practices. While doctors raise the dosages (and some docs take years to raise the dosage), patients suffer a plethora of profoundly disturbing symptoms: agonizing muscle pain, extreme fatigue and disinterest, cognitive changes, loss of hair and skin tone that makes their appearance age rapidly, breathing difficulties, digestive disruption, and more.

The idea is that, since synthetic T4 can be administered in very low increments, doctors can get the patient to test in the center of the TSH test range. Thus, a patient in the middle of the 'normal' TSH range is assumed to feel well. If the patient claims otherwise, they are lying or something unrelated to thyroid is wrong with them.

An implicit assumption of this treatment is that each patient's body takes the T4 and converts the appropriate amounts into T3, the active hormone. Another assumption: That the T4 dose is always sufficient if in range. Since 'symptoms' can't be taken into consideration, doctors rarely have these assumptions challenged.

Despite his protestation that 'everyone feels great' on thyroid therapy, Alexander's hostile response made me suspect everyone did not feel great on T4 therapy. I suspected that he, along with most Endocrinologists, were being inundated with unhappy thyroid patients, who were difficult to manage and who insisted they felt badly when his test, the TSH test, suggested otherwise.

Medicine's dirty little secret

Indeed, thanks to the Internet, the agony of thyroid patients is no longer medicine's dirty little secret. There are hundreds of Internet groups all dedicated to finding a solution to their very bad outcomes from thyroid removal. One quickly suspects that millions of patients, if not all of them, do not feel well on T4 therapy, suffering sometimes for decades at the hands of doctors who have one pill (synthetic T4) and one test (TSH) and contempt for the words of their patients.

It was easy for C Kurt Alexander of Muncie IN to be a petty bully to a hypothyroid patient. Not all docs have that particular bedside manner, but then not all of them are quite so honest as Alexander, either. You see a lot of patients online saying their doctor listens so well, but still the patients are so very ill. My theory is that all mainstream Endos do the exact same thing whether they 'listen' or not: They prescribe one pill and test it with the TSH test. They listen but they do nothing as their patients slowly die. At least C Kurt Alexander stated for the record that he was going to let me die. You have to give him that.

I went in search of a new doctor and my theory was quickly proved.

The T4 wars - Part 3 - You will die

My Endocrinologist C Kurt Alexander of Muncie Indiana was probably showing off for his young Physician's Assistant when he first started yelling at me:

"I am an ENDOCRINOLOGIST. If you have some kind of symptom, go see your GP! It's not this treatment. Everyone feels great on this treatment."

My treatment was standard: Levoxyl, which I knew to be the synthetic thyroid hormone known as T4.

"BUT my hair is falling out. I'm in pain. I can't think. Surely this has something to do with thyroid treatment?"

At the top of his voice he denied it and repeated that how I was *feeling* was not his concern.

"I'm losing my business. I can't work. What about T3?" I asked, still thinking there had to be possibilities other than me going home to suffer.

C Kurt Alexander of Muncie Indiana said simply: "You will die before I prescribe T3 without the numbers."

In that moment we both knew I would have to find another doctor and Alexander could go back to lazily prescribing insulin and getting to lunch on time. No doubt Alexander was relieved to be rid of another sick thyroid patient; I was alarmed, confused, and in hypothyroid tears.

But later, as I struggled to understand what happened through my thick hypothyroid fog, his statement came back to me. Why was he so against T3 that it would take my very death before he prescribed it?

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.

The T4 wars - Part 1 - Total Thyroidectomy

I'll confess at the beginning of this as to my biases. I have little respect for doctors. I think they are narrow minded and uncreative, always preferring to cling to the great truths they learned in medical school even in the presence of evidence to the contrary.

This is a story of evidence to the contrary: The long cruel treatment that robbed me for months of any quality of life, all at the hands of physicians.

It wasn't that long ago in medical history that physicians regarded leeches and bleeding as the standard treatment of disease of all kinds, though they knew from observation the treatment seemed to kill patients more often, if ever, than cure them.

Today doctors similarly distrust the evidence of their eyes and, like the fictional Dr House, assume all patients are at best lying or at worst neurotic.

Physicians are useful insofar as they can accurately report what they observe in similar patients, which rarely happens, and offer information on treatments, assuming they actually keep up with treatments.

Unlike most of the non-compliant patients I know, I respect Big Pharma. Whatever 'cures' are ours today, come from pharmaceutical companies. I would merely prefer not to have doctors between me and pharmaceuticals.

I have no use for 'natural' cures: herbs, vitamins and the like. I think they are stuff and nonsense. If herbs cured anything, Big Pharma would have long ago packaged them into a pill (or I guess they HAVE packaged effective herbs into pills).

Recently I was, after a span of nearly a decade, finally persuaded to have my thyroid removed. I knew at the beginning this was going to deliver me into the hands of the doctors I so little respect. The thyroid is the engine of the body. Without it, you MUST have replacement hormone or you will die. Simple as that. Doctors are the purveyors of thyroid hormone. One has little choice but to visit doctors after a thyroidectomy. They hold life in their hands.

I resolved early on to adopt a benign attitude toward doctors and give their treatment a chance. When I consented to this surgery, my GP, frustrated by years of dealing with me, the non-compliant patient, sent little love notes to my surgeon in the form of background informing the surgeon of my resistant ways. The surgeon apparently told the nurses (who so wonderfully cared for me in recovery) about my heresy and one said to me: If you will simply TRUST US...

Nurses are creatures of healing and if you have ever been in the hands of one you will agree to anything they say and I resolved to TRUST.

For a while.

Today, having been misused and aggressively abused by doctors, I apologize to the great nurses who healed me from surgery for no longer trusting, but, as you will see, this is the only lucid course for a patient who wishes to be well.

In the next few posts, I want to discuss how the Internet and the Doctor Culture have collided to create huge groups of noncompliant patients ( I am one) who know a lot about their illness, but also fall into unscientific traps that are harmful to themselves and others. The Doctor Culture has miserably failed to meet the information age and, in effect, has created and helped grow these 'noncompliant groups.'

If you are a woman (most often woman but sometimes man, too) who is facing a thyroidectomy, the total removal of the thyroid, this is the story you will live, although you soon won't think you will live through it.