People who know me well know that I have a deep and enduring distrust of medical practitioners. It doesn’t matter whether they are conventional or not, I question the motives and quality of data behind the “scientific studies” and the actual knowledge of the practitioners. In every case I’m aware of, there is a strong profit or other motivation to identify “conditions” for which there is a magic pill and convince you, or even better, your insurance company to pay for the magic potion indefinitely. Several years ago I was dealing with some unexplained and fairly scary symptoms. Over the course of about a year and a half, I bounced from specialist to specialist, each one prescribing their preferred magic potion for each symptom. As time wore on, my collection of pills started to look like the kind you see in the hands of hypochondriac old men who need a small truck to haul all their stuff home from the pharmacy. My symptoms didn’t improve either. In fact, new ones started creeping in.
At one point, I was in a neurologist’s office and mentioned that my nose had been itching a lot for several weeks. Consistent with established routine, he prescribed a magic pill. However, this time he cautioned me to come see him first if I decided to quit taking it. That caution, combined with growing unease with the number of medications I was on, prompted me to look closer at the information on this drug. The results were frightening… Side effects of use were fairly significant, but withdrawal looked terrible. One of the more common results of quitting was suicide, and 100% of users experienced the feeling of burning knives stuck in their brains. The problem this pill was supposed to help was an itchy nose… I couldn’t find a single argument that would justify the risks and side effects just so my nose would quit tingling. I decided to throw the prescription away. At that point, I went through the rest of my stash and one by one considered the risk/benefit calculus, ultimately opting to get rid of all but one — including the heartburn and cholesterol pills I’d been taking for years.
Within a few months, the more frightening symptoms had subsided. I still had residual issues, but those were there from the start and had never been addressed by all that the doctors had tried to do in the first place. A few years later I was diagnosed with and treated for sleep apnea, ultimately resolving most of the remaining issues. At this point, I’m convinced that most of the problem started out as a result of untreated sleep apnea or as side effects from the cholesterol and/or heartburn drugs. Ever since then, I’ve been what the doctors would call a non-compliant patient on the rare occasions I end up in their office. They tell me to take a drug, I ask why, how does it work, what are the risks, who did the research, what are the demonstrated benefits, how long has it been on the market, what have longer-term follow-up studies shown, why can’t my body take care of this itself, etc… And then I decide if it’s worth the risks. Generally, they either can’t answer those questions, won’t answer them in a form other than what you might tell a six year old, or the answers aren’t satisfactory. As a result, I generally refuse to comply since the doctors rarely provide me with enough information to understand sufficiently.
Aside from a broadly broken body for which the only options are long-term pain medications I won’t take, all I’m left treating medically at this point is apnea and low T. Courtesy of unfortunate circumstances, I’ve had to experiment with dropping treatment for sleep apnea — with profoundly disappointing results. I am medically dependent on treatment, and the only alternative is highly invasive surgery. I have accepted this fact, and fear power outages and going off grid as a result. However, I’ve long been suspicious of the testosterone I’ve been on for over a decade now.
A few weeks ago, I decided to let the prescription expire and see what my body would do if I left it alone. Today, I went in for lab work to see what happened, but I don’t think I need the results to know. I feel awful. I ache all over (including shooting pains in my chest and arms), have had a terrible headache for a week, have no energy or drive, am cranky beyond justification, am not sleeping well, and am having trouble concentrating among other things. In stopping testosterone, I was trying to reduce the risk of negative side effects, and encountered substantial new ones. The question remains as to whether or not the trade is worth it.
When I started testosterone over ten years ago, the belief was that it increased the odds of heart attack due to higher cholesterol and other factors. This was on my mind when I decided to quit. However, when I started to experience withdrawal symptoms, I started to do some research to find out how long I would have to live through them. The results were disappointing. For someone like me who’s been on testosterone for over a decade, the odds are that my endocrine system is so screwed up it will never recover even to the marginal level of function it had when I started treatment. If it wasn’t hard-broke back then, it almost certainly is now. Even if it will come back online, it’ll likely take years to get back to where I was when all this started — and I was miserable back then. Two years of this is an unbearable prospect if the payoff in the end is only marginally better that the pain along the way.
There is a bright side though… According to a 2009 cross sectional analysis of a large number of studies, the long term risks of testosterone replacement to clinically normal levels by transdermal or injection routes appear to be truly minimal, and are dwarfed by the positive benefits (including reduced mortality from heart disease). So while I still would rather not take any medication, it seems this one is worth the cost.
Had I been more sceptical back when I first started talking it, I may have been able to successfully try alternative approaches including lifestyle and diet changes. I might never have been in the position I’m in now. I want to be rid of the leash tying me to a doctor’s office and pharmacy, but actions taken years ago with the best of intentions have resulted in a situation where I have to choose between long term health risks like osteoporosis, frailty and a quality of life so bad that suicide looks viable; and taking a medication for the rest of my life.
Unless my lab work comes back different from what I expect, and everything I’m experiencing is in my head, I’m pretty sure I’ll just suck it up and continue taking testosterone for the foreseeable future. Even if the risks are greater than currently believed, I’d rather have a good 20 or 30 years followed by a heart attack than be miserable for 30-40 years.
Damn this sucks! I’ll know for sure in a few days, but I’m pretty sure this is the last time I try to quit testosterone.