An anonymous reader writes "Right now I have a serious, even potential life-threatening medical situation, but that's not my real problem. My real problem is that my lab results for a key indicator are in the reference range, and nothing I've tried in the past decade has ever worked to convince my doctor to prescribe a different dose when my indicator is in the reference range. [I haven't tried to explain why a 'reference range' is called a 'reference range', i.e. "Most people fitting your demographic profile would be expected to fall in the following range", and not a 'normal range', i.e. "This range is normative for you."]
I was treated for cancer a bit over a decade ago. During treatment I was told my thyroid would be irradiated and that could cause eventual thyroid failure, but that was "easily treatable." [The thyroid gland is tied to energy level, with hypothyroidism causing lack of energy (and hyperthyroidism, for different reasons), and when a diagnosis of depression is being considered, standard advice is "Get your thyroid checked even if it takes a bite out of your wallet."] I started feeling fatigue a year or two after and over roughly the decade since, there have been several times I've been positive my cancer had returned on grounds of fatigue alone. I have been experiencing a debilitating fatigue since then; I've usually been unemployed (other issues too, but it doesn't help if you interview for a position you really want, and are falling asleep in the interview despite being well-rested and having taken 1000mg of caffeine to be alert), and am presently on food stamps. Not necessarily that I'm the only person unemployed today, but since my thyroid started failing, I have gotten medical treatment which has consisted of thyroxine doses set based on blood levels for the indicator (TSH), and every single time I've been up for review on my dose, I've told my doctor that I've been severely fatigued and requested an increase in dose. The doses have increased as my thyroid has slowly failed, but I'm not aware of a doctor ever saying, "Your TSH levels in themselves don't indicate a change, but on clinical grounds I want to address your very real fatigue." Before treatment, I successfully earned advanced degrees at UIUC and Cambridge; after treatment I washed out of an advanced degree at Fordham. I've felt tired and hazy since I've began treatment about ten years ago.
Meanwhile, a week ago I committed the ultimate sin. I dug up an old prescription, began crudely cutting what are already small tablets, and tried an unauthorized increase in medication level, and the results have been dramatic. For the first time since I began treatment for my thyroid, I have felt like myself again. I've began projects, and tackled creative works. I've been able to focus on doing things instead of fighting a feeling of sleep. I've remembered pleasant memories from before treatment, memories I hadn't thought about in years. I've wanted things instead of simply reading to pass the time and hoping to die. (And I've started to think about how to communicate to a physician so that I can be myself again.)
For what it's worth, I had higher thyroid levels when I was young, and I believe I'm wired to function at some semblance of these levels. (I ate like a horse and was thin as a rail, and in the swimming pool I didn't float; I sunk at what I measured at a rate of two feet per second.) There's more that could be mentioned, but in a nutshell, I believe that I function best when my thyroid levels are what they were before they were being replaced, not what is necessarily typical of someone with my demographic profile.
There is a story about denial that mentioned a story of a young woman who approached a doctor about some symptoms and was told, "Good news! You have diabetes. With a few simple lifestyle choices, you can live a fairly normal life." She asked for a second opinion. The second doctor said, "Diabetes." She went from one doctor to another, and they kept on trying to tell her she had diabetes. Eventually, she died, and the medical examiner's report said, "Diabetes." The storyteller wrote, "It should have said, 'Denial.'" And I'm in something of a similar condition. I've made something like a decade's effort to get clinically appropriate treatment for what has been debilitating fatigue, and increasing my Levothyroxine dose very slightly makes worlds of difference, but my doctors haven't been willing to take that step because my lab results have been in the reference range and close to it, and so I get patient education when I try to say there has been a mistake with my doctor reducing my dosage. If I were to die, which came close to happening recently, the medical examiner's report shouldn't say, "Hypo-thyroidism;" it would be better to say, "TSH in reference range," or, better, "PEBKAC on part of physician."
Is there any effective way to ask for different treatment? Would it help if I asked permission to sign a waiver for dosing on clinical rather than TSH basis?
I would really like to pick up my life after this decade I have lost, and start living again instead of wasting away in my parent's house accomplishing nothing. How do I treat my physician's PEBKAC?"