NOTES FROM THE UNDERGROUND; PWA Health Group - November, 1997
Sally Cooper and Tim Horn
Testosterone, usually seen as a male hormone, is something we all have. How much depends upon a lot of things, including gender, time of day, age, menstrual cycle, menopause, stress, and medications. In men, testosterone is produced in the testes, or balls, in a daily cycle. In women, ovaries and the adrenal glands produce testosterone. For both, levels decline with age. Exactly how testosterone works is not well understood. It's strange that something so central to our sex lives would be so little understood, but like much of life, research on testosterone is pretty skewed by cultural beliefs about masculinity and femininity.
Studies have found that testosterone can get very low in men and women with HIV/AIDS. Doctors have started offering replacement therapy to men but not yet to women for treating weight loss and low levels. Here's a brief update. Testosterone is a hormone. Hormones are substances made in one place in the body, which travel around affecting how other parts work. In medical terms, we're talking the endocrine system, which, like the immune system, is really complicated, not well understood, and deeply affected by HIV. Testosterone plays at least four important roles in the body:
Studies suggest that testosterone directly affects muscle development, fat levels, bone mass, many different parts of the brain, moods, depression, energy levels, ability to have orgasms, and ability to sleep. Big stuff here - but bear in mind that other hormones, diet, exercise, medications, chemokines and much of life also affects most of these things.
Testosterone, Muscles and Weight Loss
Weight loss in people with HIV and AIDS is a serious problem, even with super-combo therapy. Much of AIDS weight loss is a specific shortage of muscle, and in women, fat as well. With low T cells, the body often burns up muscle, instead of the usual fat and carbohydrates. This is why some PWAs get skinny legs and bulging stomachs without losing weight.
Muscles need protein. Hormones, like testosterone, IGF (insulin-like growth factor) and HGH (human growth hormone), help proteins find their way to muscles and stay there. They also help maintain muscle once it has been made, and help the body burn fat instead of muscle. If it wasn't for these hormones, protein from food would not be used to make muscles, and existing muscles would get quickly burned up. Studies of low testosterone in HIV-negative people show that protein fails to build muscle, and old muscle is broken down by the body to fuel itself. Low testosterone levels lead to muscle loss.
Testosterone and HIV
Testosterone can get very low in men and women with HIV/AIDS, especially free testosterone. In the blood, testosterone exists in two forms, an active kind called free testosterone, and an inactive kind. "Total testosterone" is the total of both. Being HIV+ can increase SHBG, a protein in the blood. SHBG attaches to free testosterone and makes it inactive. The more SHBG you have, the less useful (free) testosterone you have. SHBG levels increase with AIDS and both men and women lose free testosterone. Some researchers suggest that HIV may directly damage the testes. Others believe that the immune system's response to HIV upsets all hormone production.
A 1988 study found that 25% of HIV+ men with no symptoms had low testosterone, and this increased among men with AIDS. Many studies in men have confirmed this. A study of 31 HIV+ women found low testosterone levels, even in women without any weight loss. Women with wasting had very low total testosterone. A different study of 54 HIV+ women found that almost half had low testosterone and 25% low DHEA (a testosterone precursor.)
In an 8-week study of 81 HIV+ men taking testosterone shots, 85% (of the 72 who finished) reported improvement in sexual desire and function. 64% of those with depression felt better. There were no significant changes in T-cells in any of the PWAs. There have been no testosterone replacement studies in women with HIV and AIDS. A number of studies involving a scrotal testosterone patch have been completed. The patch, which you place directly on shaved testicles (careful!), has been heavily marketed as a great, safe way to treat low testosterone and sex drive, and, possibly, reverse wasting. Two randomized studies in men using the patch found that the patch (called Testoderm) does not reverse wasting. The studies did show that testosterone became normal and that libido and energy levels (although not aspects of the study) improved.
Testosterone or Anabolics?
Testosterone contains two parts; an anabolic part (for building muscle), and an androgenic part (for developing masculine traits and libido). Anabolic steroids are prescription drugs that mimic testosterone's muscle-building properties. They're often better for building muscles than testosterone, with exercise. Taking testosterone is not the same as taking an anabolic, but it may help how they work and offer other benefits. Anabolics are used by some body-builders to look like Mr. Universe. Most physicians distrust them, and the federal government regulates them, thanks to some big-time Olympic fiascoes. Research on the use and safety of anabolics in AIDS is tiny, but promising.
There are lots of opinions about anabolics, making it difficult to figure out what and how much to take. PWAs usually take less than body-builders, so there's less risk of liver damage. Most are injection drugs. The one oral anabolic (overpriced!), Oxandrin, has been around since 1963 and may cause fewer masculine side effects in women. Studies are going on to figure out the best dose (20, 40 or 80 mg/day) for AIDS weight loss. Call us for referrals to community groups specializing in anabolics, and keep close track of your liver enzymes whether you're on testosterone or anabolics.
Taking testosterone
Low testosterone can be treated with prescription testosterone, available by shots, patches, cream or small micronized amounts in pills (1.5-3 mg/day) for women. A lozenge form for men and a patch for women are being studied. A big question is how much to take. As with most supplements, there are two strategies. You can take just enough to bring your level back to normal. This is called "physiologic replacement." This strategy causes less side effects since you're just taking what your body is already used to. Or you can take more, in order to have a therapeutic effect, just like some people take high doses of vitamins. This is called "pharmacologic replacement." Taking more means there's a greater chance of side effects.
For men, 50mg to 600mg a week has been shown to be safe for the liver. Many AIDS doctors report that 100mg or 200mg every week with intramuscular (IM) injections is enough for men to restore testosterone levels, achieve weight and muscle gain, and increase libido. If you take it with anabolic steroids (such as deca-durabolin or oxandrin), you may want to use a lower dose and spread out the injection times (i.e., testosterone injections on Monday and steroids on Thursday). For women, a useful replacement dose is unknown. A national testosterone trial (ACTG #313) is offering women 100 mg every two weeks, which seems high. Since no one has enrolled, it's difficult to evaluate this dose for safety or efficacy.
No one knows how long you should take testosterone. Some recommend that PWAs with very low levels (hypogonadism) stay on indefinitely. Others suggest "cycling off' every 12 weeks. Some PWAs can re-start their own testosterone production after stopping, especially with a booster shot of HCG (human chorionic gonadtropin). Others can't, and lose weight and libido soon after stopping. They may require prolonged therapy.
Patch or Injection?
There are several injectable forms (the generic is fine and much cheaper,) and two patches for men. Patches are time-release, so that blood levels stay consistent with normal, daily levels. They're very thin (like Saran Wrap), require changing every day, and are, of course, visible. One is applied directly to the scrotum. The other is a double patch system that is less well absorbed, but can be stuck on any part of your skin. Some argue that patches are safer, because they only raise testosterone levels back to normal.
Shots are taken once a week or every other week. To get an average daily dose, each shot is a high dose that gets lower in the blood as the days pass until the next shot. This means that right after the shot, blood levels of testosterone are pretty high. Some PWAs report that these high levels cause side effects: hair loss, irregular moods, and acne. Others believe that injections offer more bang for the buck - the initial high dose is better for building muscles than just replacing what's missing. An on-going study comparing the patch to injectable testosterone for weight loss will help sort this out.
Even though testosterone is available, getting it may take some work. Some physicians won't prescribe testosterone because of bad press from a few star athletes who used high doses of hormones for long periods, and then claimed that the drugs gave them brain tumors or heart disease. Many doctors are simply unaware that testosterone and anabolic steroids can be safely offered to men and women with HIV/AIDS for weight loss.
It's often really hard for women to get a doctor to treat weight loss at all. Research now suggests a possible role for testosterone replacement in HIV+ women. If you think testosterone is right for you, make sure that you tell your doctor. Your doctor may be able to read laboratory results, but he or she can't read your mind. It is totally within your rights to question anything your doctor says is right or wrong for you.
Side Effects from Testosterone
The various side effects are not fully understood. In men, reversible side effects have been seen at all doses, including: enlarged breasts (gynomastia), hair loss, water retention, irritability, acne, head-aches, muscle soreness at the injection site, joint stiffness and increased liver enzymes. Many of these are probably from excess testosterone, which may be more of an issue with shots than patches.
There's not much information about side effects in women. Anecdotal reports suggest that excess testosterone can lower your voice and cause an enlarged clitoris and increased facial and shoulder hair. However, case reports from post-menopausal women taking small amounts found none of these effects. This makes sense, since simply replacing normal amounts should be what the body is used to. Hormones are pretty powerful, and it's likely that some people will be more sensitive than others.
Once you start taking testosterone, the body shuts down its own natural production to compensate for excess levels in the blood. The endocrine system is a fantastic balanced system with exquisite feedback controls. Add testosterone, and the body promptly cuts back. In men, as time passes, the testicles can shrink as a result. Some doctors prescribe regular shots of HCG to offset this. There are worries that long-term testosterone therapy might be immunosuppressive and cause cancer. There is no data about this. Larger and longer studies are needed to address these very important concerns.
What does this add up to?
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What's normal testosterone? This is a bit tricky. What's considered normal is really broad, because levels vary a lot from person to person. What's low for one person can be quite normal for someone else. Since most of us have no idea what our usual testosterone level is (who gets a testosterone baseline?), trying to figure out if you're low can be difficult, unless you're super low. For women, even what's low is debatable. The research is minimal. For example, a big national lab, Metpath, used to state that under 20 ng/dl was low. Under new management, they just switched to saying that under 15 ng/dl is low. Other doctors argue that 30-60 ng/dl is a much healthier range for women, particularly after menopause. Low testosterone is called hypogonadism. Since testosterone is produced in daily cycles, levels vary by time of day, stage of menstruation/menopause, and age. Studies of men in combat show that severe stress and fear strongly lower testosterone. Coping with an opportunistic infection or a diagnosis of AIDS might bottom out anyone's testosterone. Some medications directly lower testosterone, such as Megace, ganciclovir, Nizoral and progesterone (some birth control pills), and others can wipe out your sex drive, like Prozac. Symptoms of low testosterone: low sex drive and desire, depression, loss of bone mass, low energy, moodiness, weakness, and muscle loss. In sum, low testosterone might be temporary, or even normal for you. Figuring out what's really going on means paying close attention to how you feel, including weight, muscle mass and sexual desire and finding out both your total and your free testosterone levels with an Age-Corrected Free Testosterone Test. Getting testosterone levels checked is not a big deal - it's a small blood test. The most common test is an "androgen panel," which reports your total testosterone and DHEA levels. With HIV and AIDS, you need to get an Age-Corrected Free Testosterone Test to check free testosterone levels. Prices in NYC range from $79-150, and both tests are covered by insurance and Medicaid. Usually the biggest problem is getting your doctor to order them. Normal Testosterone
These are general - not age-corrected. Keep in mind that there's been little research and the interpretation of test results may change. Get a baseline and check your levels regularly. |
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Copyright © 1997 - NOTES FROM THE UNDERGROUND - The PWA Health Group Newsletter. All rights reserved. No part of this publication may be copied or reproduced in any form or by any means without the written permission from the PWA Health Group. NOTE: The PWA Health Group is no longer in existence, as per notification in 2003. An organization called Visionary Health Concepts has succeded them. VHConcepts is a HIV/Hepatitis+ owned and operated health education company specializing in providing free HIV & Hepatitis treatment programs For more information please contact Email: edu@vhconcepts.com. .
This information is designed to support, not replace, the relationship that exists between you and your doctor.