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For people living with HIV, testosterone replacement therapy (TRT)—injections, gels and patches that boost blood levels of the potent hormone—was, for many years, an imperfect but necessary tool for fighting debilitating AIDS-wasting syndrome. Although wasting, by which a person becomes skeletally thin and weak from loss of fat and muscle mass, is far less a threat today due to the widespread use of antiretroviral (ARV) therapy, studies reveal that as many as 17 percent of HIV-positive men remain testosterone deficient.
Testosterone deficiency, or hypogonadism, occurs when a man loses his ability to produce enough testosterone, potentially resulting in loss of muscle mass, bone loss, fatigue, depression and sexual dysfunction. HIV-negative men typically don’t become hypogonadal until their 60s and 70s. Among HIV-positive men, however, the condition can occur at any age.
While screening HIV-positive men for low testosterone seems like an obvious recommendation, diagnosing hypogonadism can be tricky. First, the “normal” range of testosterone in the blood is broad—any reading between 250 to 1100 nanograms per deciliter of blood is normal, according to one of the nation’s largest laboratories Quest Diagnostics. Therefore, people with an average testosterone level on the high end of normal can see their testosterone levels drop to the lower end of normal—and exhibit symptoms of testosterone deficiency—but still not qualify for a treatable diagnosis of hypogonadism. Second, testosterone levels can fluctuate wildly from morning to night and over successive days, so a single test result that falls below normal doesn’t necessarily mean a person is hypogonadal. What’s more, people with low testosterone may not display symptoms, raising the question of whether treatment is either useful or necessary in these individuals.
While most hormone specialists, known as endocrinologists, agree that men with exceptionally low testosterone should be given replacement therapy, the treatment can have side effects. Most troublesome: It can fuel the growth of abnormal prostate cells, potentially leading to cancer. Also, long-term use of high-dose oral steroids has been linked to liver cancer. This is a growing concern for men living with HIV, many of whom are entering their 50s and are at increased risk for both liver disease and a number of non-AIDS-related cancers.
Given these risks, when is testosterone therapy appropriate for use in HIV-positive men? Jim Scott, PharmD, an associate professor of pharmacy practice at Western University of Health Sciences in Pomona, California, has conducted testosterone replacement research in HIV-positive men. Scott feels that testosterone replacement for hypogonadism is medically sound and relatively safe, but encourages people with HIV and their health care providers to weigh the potential risks as well as the rewards. What follows is a guide to the possible benefits and side effects of TRT to help you make an informed decision.
Testing Testosterone
If you’re experiencing fatigue, depression or problems in the sex department, talk to your health care provider about checking your testosterone levels. In fact, ask about making it routine—check your levels while you’re feeling good so that you can check future numbers against what is healthy for you. But keep in mind:
• Reference ranges—the range of what’s normal—can vary from one lab company to another, and this range is massive. The normal range for the total amount of circulating testosterone is below 250 ng/dL to well over 1,000 ng/dL. If you have a normal-high level and it drops to normal-low, you might not have hypogonadism, but the decrease may be significant enough to warrant replacement therapy, especially if you have symptoms.
• Testosterone is typically highest in the morning, making it the best time to test. Repeated tests, using the same lab, should involve samples taken at the same time, every time.
• Some doctors prefer to look at your level of “free” testosterone, which is the proportion of testosterone that is not bound to proteins and is thus available to go to work where needed. Free testosterone generally makes up 2 to 3 percent of the total testosterone level.
Hormones 101
Testosterone is a sex hormone, also known as androgen, found in both men and women. In females it is typically produced at very low levels by the ovaries and adrenal glands and helps regulate muscle and bone development. In men, it is produced by the testes and adrenal glands at much higher levels and helps maintain sex drive, the production of sperm cells, male hair patterns, and muscle and bone mass.
In the years before the introduction of combination ARV treatment, AIDS-wasting syndrome was quite common. Scientists eventually learned that more than half of all men with the syndrome also had hypogonadism, and they began experimenting with synthetic testosterone and its chemical cousins, anabolic steroids, as a way to counteract wasting. Early studies showed significant success with TRT in helping people regain muscle mass, and the use of this therapy became highly prevalent.
Research on testosterone continued into the late 1990s—testing ranged from daily applications of gels and patches to potentially painful weekly or biweekly injections—but eventually stopped because the number of people with wasting syndrome had diminished to the extent that study enrollment became very difficult.
Treatment Benefits and Risks
Judith Rabkin, PhD, MPH, a professor of clinical psychology at Columbia University’s College of Physicians and Surgeons, has spearheaded several studies of TRT in hypogonadal HIV-positive men. Her research has focused on fighting the more common symptoms of hypogonadism, including depression, fatigue, decreased libido and erectile dysfunction.
In one study, which compared injections of 400 milligrams of testosterone cypionate every other week with a placebo, Rabkin found that men who received testosterone were more than twice as likely as placebo recipients to report improvements in physical energy, mood and sexual function.
In 2006, the Endocrine Society, the leading group representing hormone-specializing endocrinologists in the United States, issued guidelines on testosterone replacement in hypogonadal men. Because of the potential for side effects with TRT, and the fact that plenty of men do not display symptoms of hypogonadism despite low testosterone levels, the group recommended against routine screening of the general male population. They did, however, acknowledge that HIV-positive men are at increased risk for hypogonadism and recommend short-term TRT for those found to be testosterone-deficient, just to bring testosterone levels back within the normal range. Rabkin agrees with these recommendations, saying, “When [testosterone levels] are below the reference range, there’s no question that, medically, [TRT is] indicated.”
Some studies have revealed that non-injectable TRT may offer safer results without the pain of a needle stick. Scott’s research focused on testosterone gel, which is rubbed into the skin daily and can do a better job of keeping testosterone levels steady, as opposed to the “peaks and valleys” frequently seen with injections. “When we give somebody injectable testosterone they get really high levels…and then they crash lower than they should be, and they feel bad. The gel levels that out,” says Scott.
But long-term research on the safety, tolerability and efficacy of TRT in older HIV-positive men is lacking. Indeed, Rabkin acknowledges that most of the research on testosterone in HIV-positive men has involved men in their thirties.
Additionally, as most men pass the age of 50, their risk for developing problems with their prostate gland, including prostate cancer, increases—and TRT can increase this risk and exacerbate prostate problems. According to Rabkin, “Testosterone becomes a little risky for older men, and the age of our patients has increased over time.” The Endocrine Society guidelines recommend that men be carefully screened and monitored for prostate problems before and after being given testosterone therapy.
Prostate troubles aren’t the only concern with testosterone. Other side effects can include worsening of a sleep disorder called sleep apnea, growth of breast tissue, acne, mood volatility, testicular atrophy, reduced sperm count and male-pattern baldness.
Though the guidelines recommend at least short-term use of testosterone in HIV-positive men to augment ARV treatment in reducing muscle wasting, Rabkin found that men’s testosterone levels plummeted within days after stopping treatment to the same levels they were before treatment started. She asserts that most men with hypogonadism cannot sustain normal hormone ranges after initial TRT and will probably require life-long testosterone augmentation.
People with HIV should consult with their physician and weigh all the potential risks and benefits of TRT. If they’re found to have testosterone levels lower than the normal reference range on at least two tests and are experiencing symptoms, therapy may be warranted. For people without symptoms, the data are less clear, and safety concerns may weigh more heavily.
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Previous Comments:
comments 1 - 9 (of 9 total)
Mr Rob, West Palm, Florida, 2008-07-18 21:33:27
I have been on testosterone therapy for over 5 years now. The shots injections are better but you do have a tendency to peak and then crash. My problem is that recently my rcb was too high.The choice was a"bleed" once a month or risk a heart attack or stroke. Plus I have a double negitiave against me I have had a pitutary tumor removed 2 years ago so I don't produce any hormones. I do reccomend this form of treatment. The gels are a hassel but they are stable and keep a constant level.
Tim Sanders, Reno, NV., 2008-07-03 01:56:19
Go to Steroid Encyclopaedia.com for medications on how to avoid testosterone crash and associated side affects. Pretty easy but because of negative press on steroids thanks to our athletes and the tattle tails, steroids and associated meds need to be purchased in Europe. SE.com helps with quality products sources and lots of great info. Good Luck.
Lloyd Allan Thompson, Toronto, 2008-07-02 11:29:29
Ulong, get a grip.. Your assertion that the folks at POZ are uncaring is unfair and totally without merit. POZ prints many articles about many issues concerning HIV/AIDS. Try posing a question about a subject of concern and I'm confident they will respond. Keep up the GREAT work POZ folks...
John, , 2008-06-26 15:42:15
How do i come off test therapy and return to normal? I have been on TT for 5 yrs.
Ulong, , 2008-06-26 15:41:15
"For people living with HIV...." Is this opening intentionally ironic? It's MEN that are the sole subject of this story. We don't know *&% about hormone levels in women. For years I have watched HIV + men prop themselves up with testosterone while women have no option for loss of muscle mass, depression or fatigue. Not that anyone at POZ apparently cares. Nice. Thanks, guys!
Rob, San Diego, 2008-06-26 12:19:51
Been using testosterone gel for the past couple of years and ill be the first to say that it has had a profound change in my life, sexually, work, socially. being involved with a negative person has made the effects of the gel even more important. strongly encourage anyone to get on it
thumper, Dallas, 2008-06-25 20:08:57
Have been on T-replacement therapy for a couple of years.. HIV+ T4-380 VL 54k and not on meds... have been using sub-cutaneous implants, 3x200mg every 6 months or so. GREAT results and less mess than gels, less arduous than injections... Why on earth is it so difficult to source this here in the USA? Easier to have it sent from home (Australia) than try to obtain here. Hardly a single practice - including endocrinologists - use them in the Dallas Metroplex!
Erin Stevenson, Eureka, 2008-06-25 18:01:37
I've been on bi-weekly testosterone shots for ten years now (I'm 60) and it has been able to keep my levels either at the middle of the normal range, or in the lower 1/3 of the normal range. I've seen no loss in energy, symptoms of fatique, or ED. I do have to deal with a loss of appetite, so am always vigilant about eating a really balanced meal, if only twice a day and using both the Immune Probiotic drink from DanActive and insuring that I consume at least 1300-1600 calories a day.
Bill Pronto, Royal Oak, Michigan, 2008-06-25 12:43:00
Thanks for the insightful article about testosterone - low levels and side effects.
I have spoken to my Doctor about this since I was experiencing fatigue and depression and in fact my testoserone levels were low.
I appreciate you continuing on keeping issues like this available to readers like me!
