Low T: A Tale of Two Hormones (Gender Analysis 01)

Hi, welcome to Gender Analysis. In recent years, prescription testosterone has become a booming industry around the world. From 2001 to 2011, the percentage of men over 40 in the US who were prescribed testosterone replacement grew from about 0.8% to 2.9% – more than a threefold increase. And data from 41 nations shows that yearly testosterone sales have increased from $150 million in 2000 to $1.8 billion in 2011. Meanwhile, chains of “low T clinics” focusing on testosterone therapy have opened dozens of locations across the country.

So what’s behind this growth? Let’s take a look at one commercial for prescription testosterone gel:

“I have low testosterone. There, I said it. See, I knew testosterone could affect sex drive, but not energy or even my mood. That’s when I talked with my doctor. He gave me some blood tests – showed it was low T. That’s it. It was a number.”

Companies selling these medications increased their spending on testosterone ads from $14 million in 2011 to $107 million in 2012, using a snappy new name like “low T” and the promise of a quick and easy pick-me-up for older men. If your T is low, you feel bad; if your T is higher, you feel good – right? This is the approach that’s fueled an explosion in testosterone usage. The problem is, it’s not just a number. In reality, “low T” levels are uncertain, the symptoms are vague, and the relationship between levels and symptoms really isn’t so direct.

 

How do you define “low” T?

The concept of “low testosterone” implies there’s a level that’s considered low. Interestingly, there isn’t really a medical consensus on what that level is. A report by the American Urological Association described hypogonadism as a total testosterone level lower than 300 ng/dL. However, that same report also defined “true hypogonadism” as less than 150-200, and later said that levels from 200-346 are in a “gray zone”. Other studies and sources have defined low testosterone as less than 230, 250, 280, 319, 325, or 350. One laboratory test considers levels as low as 132 to be normal. The Endocrine Society actually acknowledged that their panelists couldn’t agree on 200 or 300 as a lower limit when deciding whether to treat older men who have low testosterone symptoms.

According to one article in the Cleveland Clinic Journal of Medicine:

There is no general agreement on the acceptable normal range of testosterone…

Another article adds:

There are no absolute testosterone levels below which a man can unambiguously be stated to be hypogonadal.

This is not a merely theoretical dispute. As Dr. Lisa Schwartz pointed out, defining low testosterone levels as below 230 ng/dL would classify 7% of men aged 50 or older as having low T. But moving the cutoff to below 350 would expand this to 26% of that population.

Meanwhile, there’s a substantial gap between the testosterone levels that most medical authorities aim for during treatment, and the levels that “low T clinics” aim for. The Endocrine Society suggests that levels of 350-750 ng/dL are best, while the Cleveland Clinic recommends levels of 400-600. However, Dr. Jeffrey Life of Cenegenics Elite Health prefers to aim for 800-1000, the Apex Clinic in Oklahoma City lists a goal of 800, the New Jersey Virility Center recommends 600-800, and the Total Male Medical Center describes 800-1100 as “optimal levels”. More T Clinics claims that levels over 700 “can profoundly improve your quality of life by increasing your energy, mental clarity, sex drive, sleep quality, muscle mass, and overall health.”

So, one test might show that a man has low testosterone, while a different test indicates his levels are normal. Another man might have levels that are firmly within all these “normal” ranges, but a “low T clinic” would think he still needs more.

 

Symptoms of low T, or something else?

But low T levels are only half the story. What about the condition itself, and its symptoms? Hypogonadism – the insufficient production of testosterone in men – is a real condition. It can be caused by injuries, infections, certain medications, pituitary disorders, cancer treatment, inflammation, autoimmune disease, genetic disorders, or just normal aging. Its symptoms can include lowered sex drive, erectile dysfunction, infertility, loss of muscle, decreased body hair, osteoporosis, tiredness, difficulty concentrating, and even breast growth. For men with hypogonadism, this is a serious issue.

But when low testosterone is simply the result of aging, the symptoms are often nonspecific. For instance, fatigue, loss of libido, and difficulty concentrating could be caused by low T, but this can also be caused by depression. And companies selling prescription testosterone frequently offer symptom-based screening online. Websites for AndroGel and Testopel ask questions like, “Do you have a lack of energy?”, “Have you noticed a decrease in your enjoyment of life?”, “Are you sad and/or grumpy?”, “Are your erections less strong?”, and “Are you falling asleep after dinner?”

These screeners are based on the Androgen Deficiency in Aging Males questionnaire, designed to detect low testosterone levels in older men. But the ADAM questionnaire has some performance issues of its own. In the first study of the ADAM screener’s accuracy, it was given to Canadian doctors aged 40-62, and it was found to have a sensitivity of 88% and a specificity of 60%.

A test’s sensitivity refers to how likely it is that someone with a condition will receive a positive result, and specificity refers to how likely it is that someone without a condition will receive a negative result. So this study showed that out of 100 men who do have low testosterone levels, 88 will get a positive result from the ADAM screener, and the other 12 will receive false negatives – they’ll be told that they don’t have low testosterone, when they actually do. Meanwhile, because the specificity in this study was 60%, this means that out of 100 men without low testosterone, 60 will get a negative result from the screener – but 40 of them will get a false positive. The test is broad enough to encompass a lot of the men who do have low testosterone, but also some who don’t.

This is not an isolated finding from one study. In seven studies from 2004 to 2013 using the ADAM questionnaire (1, 2, 3, 4, 5, 6, 7), its sensitivity ranged from 66.7-88%, and its specificity ranged from 14.8-36.6%. When men without low testosterone take these online screeners, it’s possible that a majority will nevertheless be told that they do have low T. As one article explained:

…the ADAM questionnaire will rarely miss the diagnosis in hypogonadal individuals, but will also incorrectly identify many nonhypogonadal men. The lack of specificity is not only due to the fact that many positive responses in the questionnaire may be indicative of other conditions such as depression, but also because scores derived from these questionnaires do not predict or correlate well with measured free and total testosterone.

A story in the New York Times briefly touched on the origin of the ADAM questionnaire:

Dr. Morley recalls that he drafted the questionnaire in 20 minutes in the bathroom, scribbling the questions on toilet paper and giving them to his secretary the next day to type up. He agrees that it is hardly a perfect screening tool.

Yet this is the tool that sellers of prescription testosterone are using to encourage men to see a doctor – a tool that could be telling up to 85 out of 100 healthy men that they might have low T. Surprisingly, other screeners don’t do much better. In various studies (1, 2, 3), the Aging Males’ Symptoms scale was shown to have a sensitivity ranging from 54%-96%, and a specificity ranging from 30%-48.1%. A screener used by the Massachusetts Male Aging Study had a sensitivity of 76% and a specificity of 49%. Ultimately, the symptoms of low T don’t seem to be so strongly associated with, well, low T. This is especially concerning given that only 51% of men on testosterone therapy have actually been diagnosed with hypogonadism, and only 75% have had a blood test to check their T levels within the past 12 months.

 

Low T, without the symptoms

But what about men who do have low testosterone? Oddly enough, low T levels can often be asymptomatic – men with low T might not show any signs of it. For instance, in a study of hundreds of elite athletes, 16.5% of men were found to have testosterone levels below normal. Another study focused on 1,475 men in the Boston area aged 30-79. 24% of them had total testosterone levels below 300 ng/dL, but only 5.6% had low T levels along with symptoms. So, of all the men whose testosterone levels might be considered low, three out of four did not have significant symptoms of low T.

The Massachusetts Male Aging Study went into further detail, grouping men aged 40-70 into three different ranges of testosterone levels. At baseline, in the group with total testosterone levels greater than 400, 40% had 3 or more symptoms of low T. Of the men with levels of 200-400, 42% had 3 or more symptoms. Even among men with levels below 200, only 53% had 3 or more signs of low T. So, a substantial number of men with these symptoms don’t actually have low T levels – and many men with low T levels don’t have these symptoms. Dr. Ronald Swerdloff points out that men’s low T thresholds can be diverse:

“One man might get low libido at 325 milligrams per deciliter, while another might not get low libido until 450”

All of these factors – vaguely defined levels, vaguely defined symptoms, and a vague relationship between the two – have come together to create a fertile environment for the overprescribing of testosterone.

 

What if you’re not a cis man?

As a trans woman, witnessing the rise of the “low T” industry has been fascinating – and more than a little frustrating. The complex that’s emerged here is seemingly designed to ensure that as many men as possible will be on prescription testosterone. A man might feel tired, and he happens to see a commercial about how this could be “low T”. He’ll go to a site like IsItLowT.com, and a quiz that might be no more accurate than a coin flip will tell him to see his doctor. And he’ll make an appointment at his local “low T clinic”, where even normal ranges aren’t considered high enough. Before you know it, we’ve got a billion-dollar market on our hands.

But many trans people require treatment involving sex hormones as well. As Dr. Abraham Morgentaler writes, “It could be said that testosterone is what makes men, men. It gives them their characteristic deep voices, large muscles, and facial and body hair, distinguishing them from women.” So it’s no surprise that trans men would often want more testosterone, and trans women would often want to get rid of theirs and replace it with estrogen.

Yet our experiences of engaging with the medical system could not be more different from that of cis men seeking treatment for low T. A spokesman for AbbVie described campaigns like IsItLowT.com as “disease state awareness initiatives”. But there are no major marketing initiatives raising awareness of transition treatments, or running commercials suggesting that if you’re tired and depressed, you might be transgender. None of these businesses are promoting websites about gender dysphoria, or offering unhelpful quizzes that tell a significant fraction of cis people to talk to their doctor about transitioning. And there are no multi-state chains of clinics focusing exclusively on transition treatments – let alone telling cis people that even if they’re healthy, transitioning can make them feel even better.

There is no overbroad promotion of trans medications – because most of the time, we don’t even have access to the basics. Medical transition is recognized as effective and necessary by the American Psychological Association, the American Psychiatric Association, the American Medical Association, and the World Professional Association for Transgender Health. Unlike “low T”, transitioning isn’t the subject of any real medical controversy. But if you haven’t yet realized you’re trans, you’re not going to learn about it from a commercial break during Monday Night Football.

Basic awareness – what it feels like, what you can do about it, and where to find treatment – is mostly provided by the community via ad hoc resources like internet forums and personal websites. There is no organized promotion, just everyday people trying to help each other and offering what they know. It’s entirely possible that the current best way to find a clinic is to go to Reddit, find one of the trans sections, and ask if anyone in your area knows a doctor who’ll see you. That’s how little institutional and corporate support we have.

 

Waiting times for transition treatments

And if you do manage to find a clinic, it’s often very difficult to be seen or receive treatment in a timely manner. After the day I first made an appointment with a therapist, it was 3 months before I had my prescriptions in hand. And in my experience, that’s on the lower end – one of my friends has been waiting 8 months just to get an appointment with an endocrinologist. Now, what if I had been looking for testosterone instead? I’ve had my baseline T levels checked, and depending on which “normal” range you choose to apply, they were potentially low even before hormones. Theoretically, I could have gone to the clinic a few miles from here that’s offering a month of free testosterone, told them about how little body hair and muscle mass I had to start with, and received my first injection within a matter of days.

Countries with universal healthcare seem to have similar issues with the availability of transition treatments. The NHS’s Interim Gender Protocol from 2013 states that receiving hormones will typically take 6 months after the first visit to a gender clinic. Before that, just waiting for the first consultation can take even longer. The Nottingham clinic reports a waiting time of about 6 months, the Sheffield clinic reports a wait of 49 weeks, and the Charing Cross clinic has a waiting list that’s 12 months long. A 2012 audit of Scotland’s Lothian clinic found a waiting time of 68 weeks. For perspective, 68 weeks after I made my first appointment, I had been on hormones for over a year. And a study by the NHS in 2013 found that patients in northwest England traveled a median of 214 miles for their gender clinic appointments. That’s about the same distance as driving from New York City to Boston.

The situation in Canada isn’t much better. In January 2013, the Centre for Addiction and Mental Health in Toronto stated there was a waiting time of one year for a first appointment. In August, the Centre actually published an open letter asking family doctors to start prescribing hormone therapy for trans people. And by October of 2013, The Star reported that their waiting list had grown to 16 months. That’s a long time to wait to see a doctor.

 

Trans prevalence and low T prevalence

Now, some people might think that this is simply a statistical inevitability – that trans people must be incredibly uncommon compared to cis men with low testosterone, so naturally there are fewer resources available. But if we’re really so rare, then in a world where even the private Low T Center already has 53 clinics in 12 states, it should be trivial to provide for what little we need. Yet in reality, we’re not that rare.

Let’s consider the prevalence of symptomatic low testosterone. Thanks to uncertainty surrounding the symptoms and levels, this can be interpreted somewhat freely. In 1999, the makers of AndroGel stated in marketing materials that hypogonadism affects about a million men in the US. In 2000, they estimated the potential market as 4-5 million men. And by 2003, they were claiming that up to 20 million men had hypogonadism. Meanwhile, a 2002 article in the Urologic Clinics of North America reported that hypogonadism affects about 1 in 200 men. An article in the Medical Journal of Australia repeats this number, as does the 6th edition of Practical General Practice. And a study of nearly 3,000 men aged 40-79 found that only 2.1% had low testosterone with symptoms.

Now, what about trans people? A report by the Williams Institute cites figures showing that 0.1-0.5% of the population is trans. Another report by the Gender Identity Research and Education Society in the UK estimated that 0.6% of people are trans, and an update showed that the number of trans people seeking treatment is doubling every 6 and a half years.

So, based on figures like 1 in 200 men, or 2.1% of men aged 40-79, men with symptomatic low testosterone could be 0.25% to about 0.5% of the population. Even a more generous figure of 5.6% of men aged 30-79 is still only about 1.6% of the population. And trans people are around 0.1-0.6% of the population. It may not be the same, but it’s not that far off.

 

Public health and marketing interests

From a public health perspective, the shortage of transition-related services makes little sense in light of the excessive promotion of testosterone for cis men. But from a marketing perspective, the reasons are obvious. Testosterone has been portrayed as affirming and enhancing masculinity. It offers the promise of youthful vigor, greater fitness, and better sex. If you’re a man, it’ll make you even more of a man. And it evidently hasn’t been difficult to find millions of men who want exactly that, even if they have no medical need for it. Basically, testosterone is sexy.

Transitioning is too, in my opinion, but it seems like most people don’t see it that way. If anything, they don’t really want to see us at all. Transitioning destabilizes the assumptions that are used to market prescription testosterone. From one direction, it demonstrates that testosterone and masculinity are for more than just cis men. From another direction, it represents the elimination of masculinity on a physical, cellular level. Rather than reinforcing common notions of masculinity, transitioning deconstructs them. And when people see someone who could have cultivated their masculinity, but instead chose the chemical opposite, they’re often uncomfortable with that. Convincing men to take more testosterone is easy. Selling transition? Not so much. It’s no coincidence that men with low T are asked to “step out of the shadows”, while trans people are left in the dark.

I’m Zinnia Jones. Thanks for watching, and tune in next time for more Gender Analysis.


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About Zinnia Jones

My work focuses on insights to be found across transgender sociology, public health, psychiatry, history of medicine, cognitive science, the social processes of science, transgender feminism, and human rights, taking an analytic approach that intersects these many perspectives and is guided by the lived experiences of transgender people. I live in Orlando with my family, and work mainly in technical writing.
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