A Practical Guide to a Healthy Body for People Living with HIV
Hormones are chemical messengers that travel through the body to help the cells perform their many tasks. They influence our immune system, our energy, our mood, how well we sleep, our sex drive, our appetite and digestion, the strength of our muscles, the health of our bones and many other aspects of our health and lives.
Some people living with HIV may have low levels of certain hormones—most commonly, testosterone, thyroid hormones and DHEA (a hormone that leads to the production of androgens and estrogens, male and female sex hormones). People with HIV who have low CD4 counts, life-threatening infections and who have experienced severe weight loss are more likely to have seriously low hormone levels. For people who are in the earlier stages of HIV infection, changes in hormone levels may be less pronounced but can still cause troubling symptoms. Whatever stage of HIV infection you’re at, it’s a good idea to have your hormone levels tested and, if necessary, to take steps to help restore the balance.
As with many blood tests, labs define “normal” hormone levels on the basis of the average levels among a large number of people in the general population. Your “normal” may be within or outside of that range. The right hormone levels for you are the ones that eliminate symptoms and return you to a vibrant state of health.
Restoring hormones to optimal levels can not only relieve symptoms but also help prevent serious conditions, such as heart problems, osteoporosis, depression, loss of sex drive, fatigue and problems with muscle strength and balance.
What causes hormone changes?
Hormone levels can change for a variety of reasons, including:
- HIV infection
- opportunistic infections, such as cytomegalovirus (CMV), Mycobacterium avium complex (MAC), Kaposi’s sarcoma (KS) and histoplasmosis
- some medications
- some street drugs
In addition, our hormone levels change as a natural part of aging, whether we are HIV-positive or HIV-negative.
Far fewer people with HIV get opportunistic infections these days now that effective antiretroviral therapy (ART) is available, and fewer people experience the hormone changes that can occur as a result of those infections. For example, CMV, MAC, KS, histoplasmosis and tuberculosis (TB) can all cause the adrenal glands to produce inadequate amounts of certain hormones. (The adrenal glands are two glands situated on top of the kidneys that produce sex hormones and cortisol.) Thankfully, effective HIV treatment and, in some cases, prophylactic antimicrobials can prevent these problems.
Medications and other drugs
Several medications and drugs can affect your hormone levels, including the following:
- Interferon, which is used to treat hepatitis C, can sometimes cause or aggravate hypothyroidism (a condition whereby your thyroid gland does not produce enough thyroid hormones) or hyperthyroidism (when your thyroid produces too much of the thyroid hormone thyroxine).
- Ketoconazole and some other drugs used to treat fungal infections may suppress the production of adrenal corticosteroid hormones and sex hormones.
- Rifampin (Rifadin, also in Rifater), used to treat tuberculosis, may cause levels of the hormone cortisol to become too low and can also contribute to hypothyroidism. (For a list of drugs that can affect your thyroid hormones, see “Risk factors for hypothyroidism.”)
- Marijuana can increase estrogen levels and lower testosterone levels, though in studies these lower levels were still within the normal range.
- Opiates can decrease the production of luteinizing hormone (which triggers ovulation in cisgender women1 and stimulates testosterone production in cisgender2 men) and follicle-stimulating hormone (which regulates reproductive processes in both women and men). Opiates can also increase the production of the hormone prolactin, which stimulates breast development and milk production in cisgender women.
You may know from experience that stress can interfere with your appetite, sleep, mood and sex drive. Stress also has an impact on your hormones. Our bodies are hard-wired to perceive stress as an imminent threat to our survival. Although your stress may be due to an impossibly heavy workload, the rush-hour traffic you have to fight your way through, your fears about making ends meet or the fight you just had with your ex, the stress triggers a “fight or flight” reaction, as though a sabre-toothed tiger is about to attack.
First, the hypothalamus, a small area at the base of the brain, sets off an alarm system. This prompts your adrenal glands to release a surge of hormones, including adrenaline and cortisol. The adrenaline raises your heart rate and blood pressure, boosting blood flow to your muscles and enabling you to fight or flee. Cortisol, also known as “the stress hormone,” increases the level of glucose in your bloodstream to provide the fuel you need to keep those muscles pumping while you fight or flee. Cortisol also suppresses bodily functions that are not essential for your response to the threat—it alters your immune response and suppresses the digestive system, the reproductive system and growth processes.
If you were being chased by a sabre-toothed tiger, this response could help save your life. But when stress continues over an extended period of time and becomes chronic, this stress response can become a serious health hazard. Chronic stress can lead to digestive problems, heart disease, insomnia, depression, weight gain, skin problems or hair loss.
To keep those stress hormones in check, try to address the issues in your life that are the main sources of stress. Many people find that some combination of exercise, meditation, deep breathing, yoga, relaxation techniques, counselling and peer support can be extremely helpful for alleviating their stress.
Aging, perimenopause and menopause
HIV, opportunistic infections, some medications and other drugs, and stress can all potentially throw your hormones out of whack. At the same time, there are hormone changes that occur as a natural and normal part of the aging process.
For cisgender men, testosterone levels peak during adolescence and early adulthood and then decline slowly from about age 30 onward. The transition stages for cisgender women occur at puberty and then during perimenopause and menopause. Menopause usually occurs between the ages of 45 and 55, although it can occur earlier. And perimenopause—the years that lead up to menopause—can start anywhere from one to 10 years before menstruation stops completely.
During perimenopause, your body slows down its production of estrogen and progesterone. Your menstrual cycle may become shorter (for example, 24 days instead of 28 days), you may skip periods or your bleeding may be heavier than normal. Some individuals notice that their vaginal tissue thins, their premenstrual syndrome (PMS) worsens, their sex drive changes and they experience hot flashes, night sweats, insomnia and irritability. Although menopause often gets a bad rap, many transition through menopause without any unpleasant symptoms; some even welcome “the change.” The experience varies dramatically from person to person.
Early studies reported a number of differences between the menstrual cycles of HIV-positive and HIV-negative cisgender women; however, more recent and better-designed studies suggest that HIV generally has less impact on menstruation than originally thought. There generally seem to be no significant differences in the rates of excessive menstrual pain, perimenopausal discomforts or the development of early menopause in HIV-positive women compared with HIV-negative women. However, some research has shown that women with low CD4 counts are more likely to have skipped or infrequent periods. In particular, one large study found that women with CD4 counts below 200 were about 50 percent more likely to have irregular cycles with 90 days or more between periods.
Tips for dealing with menopause and perimenopause
Menopause is a natural part of growing older. You don’t need any kind of treatment for it unless you find that you’re experiencing bothersome symptoms.
Studies have found that consuming a combination of simple and complex carbohydrates increases the levels of serotonin, the brain’s “feel-good” chemical, and can help relieve the emotional challenges you might experience during perimenopause or menopause. Any foods that raise your blood levels of tryptophan may help because tryptophan stimulates the production of serotonin. High-carbohydrate foods like whole-grain toast or hot cereal, as well as protein foods that are high in tryptophan, such as dairy products and turkey, will raise serotonin levels. (You may want to monitor your weight, as excess carbs can lead to weight gain.)
For painful or swollen breasts, some naturopaths find that vitamin E can be helpful. A daily dose of 800 to 1,200 IU taken the week before your period starts and during your period may bring some relief. Vitamin E has also been found to be helpful for reducing hot flashes and night sweats during perimenopause or menopause. The amount required is very individual so speak to a healthcare provider about how much you should use. Supplementing with the full range of compounds from the vitamin E family, called mixed tocopherols and tocotrienols, is preferred. If possible, take a tocopherols supplement at a different meal than a tocotrienols supplement.
5-hydroxy-tryptophan (5-HTP) may be helpful for relieving the sleep problems that can accompany perimenopause and menopause. Your healthcare provider may recommend that you take it with vitamin B6 (many 5-HTP products contain vitamin B6). 5-HTP should never be taken by people who are also taking medicines to treat depression or anxiety. Speak to your healthcare provider or pharmacist about these options.
Over-the-counter and prescription drugs
Naproxen (Aleve, Anaprox), mefenamic acid (Ponstan) and ibuprofen (Advil, Motrin) are anti-inflammatory drugs that relieve cramps and may reduce PMS symptoms. Some of these are available over the counter from your pharmacist. Prescription drugs are sometimes recommended for the more disruptive emotional challenges of menopause.
Although testosterone is considered to be primarily a male hormone, women also produce some. In both men and women, low testosterone can lead to:
- lower sex drive (or libido)
- an inability to build muscle mass (even when a person works out), which can lead to wasting
- decreased strength and compromised ability to do everyday activities
- difficulty maintaining balance
- loss of appetite
- decreased heart function
- loss of bone mass
If you are experiencing these symptoms and you have low testosterone, your doctor may recommend testosterone replacement therapy to address these problems.
A blood test is the only way to determine if your testosterone level is low. There are two tests: total testosterone and free testosterone. If possible, get both tests. (Not all provinces and territories cover the costs of these tests.) To decide whether you need testosterone replacement therapy, you and your doctor should review your test results and any symptoms you are experiencing that could relate to low testosterone levels. If replacement therapy is an option, ask your doctor about all of the risks and benefits.
Testosterone replacement therapy
Taking testosterone replacement therapy can boost your mood, energy, strength and sex drive while also helping to maintain heart and bone health. Research has shown that reversing testosterone deficiency may, in some cases, also help to reverse insulin resistance. In a study of HIV-positive men with wasting and low testosterone levels, those who took testosterone supplements experienced improved insulin sensitivity as their lean body mass increased.
That said, testosterone replacement therapy is not a silver bullet that will magically reverse the aging process. And it may come with risks. Studies have reported conflicting findings related to the risk of cardiovascular disease associated with testosterone replacement therapy. A few studies have found increased risk, while others report either no increased risk or reduced risk among some groups of men. Moreover, its safety in men who are older and who have diabetes or obesity has not been well studied. As everyone’s risk for cardiovascular disease is different, speak to your doctor about whether testosterone therapy is right for you.
For many men whose testosterone levels are low, long-term replacement will be necessary. Short-term replacement may initially return testosterone levels to normal and reverse related symptoms, but if the therapy is discontinued, testosterone levels will promptly drop and the symptoms may return.
Anyone on testosterone replacement therapy should have follow-up testing of both their total testosterone and free testosterone levels done to ensure that they are taking the right dose. Too much testosterone can raise blood fat levels, cause prostate enlargement, increase the risk of blood clots, raise red blood cell counts, cause acne, make a person more aggressive and contribute to male pattern baldness. Women may also experience masculine body hair growth and a deepening voice.
Types of therapy
Testosterone replacement therapy is available in different forms: as a skin cream, gel, patch, oral medication or injectable. You and your doctor will determine what form is suitable for you based on availability, side effects, your situation and other factors. Long-term use of oral testosterone can adversely affect the liver, and long-term use of testosterone injections can shut down a person’s remaining testosterone production and ultimately cause more problems than it solves. Injections also carry a much higher risk of side effects (including anxiety, headaches, aggressiveness, irritability, mood swings, insomnia, testicular shrinkage and impotence). The only time injectable testosterone might be advisable is as an initial therapy for men who are experiencing life-threatening wasting. In this case, an injection is sometimes used to boost testosterone levels and help reverse the loss of lean tissue.
A standard formulation for testosterone replacement therapy is gels, such as Androgel and Testim, which contain one percent testosterone. Some doctors prefer creams or gels that have been prepared in a pharmacy to meet the unique needs of an individual, because the dose can be tailored to precisely meet your needs. These compounded creams or gels tend to be much less expensive. They usually contain one percent to 20 percent of testosterone and are applied once or twice daily. Follow-up testing is done after the first month of use to fine-tune the dosage if necessary.
Special considerations for women
For women who need testosterone replacement, a compounded cream or gel can provide the small amount that may be required to achieve optimal testosterone levels. There are also alternative options that some naturopathic doctors recommend for boosting testosterone in women. Some naturopaths may suggest the use of chasteberry; however, researchers are not certain how ingredients in this herb work. Also, chasteberry may interact with other medications. Zinc, a mineral that some people with HIV are short of, is sometimes suggested for women as well as men. Some naturopaths recommend that zinc supplementation should always be balanced with copper supplementation; these minerals should be taken separately because they compete for absorption. This combination may stimulate the body to produce more of its own testosterone. It would not be enough to address serious testosterone deficiencies, but it may help people with mild deficiencies. Talk to your healthcare provider and pharmacist about the potential benefits of zinc.
Special considerations for men
Some experts recommend that all men on testosterone replacement therapy be tested regularly for two other hormones, DHT (dihydrotestosterone) and estradiol, because testosterone can be converted into these and have potentially negative effects. To help avoid raising DHT levels, testosterone cream or gel should be applied to parts of the body that are hairless (the inner arm, back of the knees, around the ankles) because enzymes around the hair follicles can convert testosterone to DHT. The herb saw palmetto can also be used to help prevent DHT elevations. (Talk to your doctor about whether saw palmetto could interact with any medications you are taking.) To help prevent estradiol elevation, a compounding pharmacy can add diindolylmethane (DIM) to the testosterone cream.
DHEA is a hormone that is produced by the adrenal glands and, to a lesser extent, by the testes and ovaries. It is the precursor to other hormones such as testosterone and estrogen, and it helps stimulate the production of growth hormone. Studies have shown that people living with HIV often have low levels of DHEA. Levels of this hormone also decline steadily with aging. Studies in older HIV-negative people have shown that supplementation can sometimes increase energy, reverse memory problems, boost appetite and improve mood and the overall feeling of well-being. HIV specialists who prescribe DHEA for their patients say that restoring optimal DHEA levels may help restore immune function, improve energy and protect the body against the negative effects of stress. However, replacement therapy should not be taken unless testing reveals that your DHEA levels are lower than optimal.
As with all hormones, more is not better when it comes to DHEA supplementation. DHEA is a powerful steroid and taking too much can raise a person’s estrogen or testosterone to abnormally high levels. DHEA should only be used under medical supervision and when tests show the need for it.
Some people with HIV develop thyroid problems. The thyroid is a small butterfly-shaped gland that sits above your collarbone and below your Adam’s apple. It produces the hormones thyroxine (T4) and triiodothyronine (T3), which affect a person’s metabolism. These control how our bodies store and use energy and they help regulate our mood and weight. The most common thyroid abnormality is hypothyroidism, a condition whereby the thyroid becomes underactive and does not produce enough thyroid hormone.
People with low CD4 counts and active opportunistic infections have a higher chance of developing hypothyroidism. In addition to HIV infection, other risk factors include:
- a family history of thyroid disease
- gender (women are more likely than men to develop thyroid problems)
- age (women over 60 have a one in five chance of having thyroid disease)
- autoimmune disease (such as lupus, multiple sclerosis or rheumatoid arthritis)
The use of certain medications can adversely affect the thyroid. Drugs that can contribute to hypothyroidism include certain heart drugs, such as amiodarone (Cordarone), the hepatitis C drug interferon-alpha (Pegasys, Pegetron) and the antidepressant drug lithium (Carbolith). Also, the use of other medications can impact your levels of thyroid medication and may require that you adjust your dose—for example, the HIV drug ritonavir (Norvir, also in Kaletra), the tuberculosis drug rifampin (Rifadin, Rofact) and the anti-seizure medications carbamazepine (Tegretol), phenytoin (Dilantin) and phenobarbital.
The nutritional supplement alpha-lipoic acid, a widely used antioxidant, appears to cause thyroid problems in some people. When taken at higher doses, symptoms related to thyroid deficiency may occur. This problem was only recently discovered and it is not yet known how many people may be susceptible to it. If you are thinking of taking alpha-lipoic acid, talk to your doctor about this issue and about having baseline thyroid testing done before you start using the supplement.
Symptoms of hypothyroidism
Signs and symptoms of an underactive thyroid include:
- memory problems or “brain fog” that makes thinking and concentration difficult
- low body temperature, which can result in cold feet and hands and a feeling of being cold even in a room where everyone else is comfortable
- skin that is dry, rough or scaly
- fingernails that split, peel or break
- hair loss or hair that becomes coarse or brittle
- difficulty sweating (even during hot weather or exercise)
- constipation that does not respond to mild laxatives or magnesium
- muscle weakness or pain, including fibromyalgia symptoms
- weight gain
- high cholesterol
Thyroid hormone testing
If you have any of these symptoms or any of the risk factors, talk to your doctor about getting screened for thyroid disease. A diagnosis of thyroid disease is generally based on symptoms, a physical exam and blood tests. Blood tests that reveal a low level of thyroxine and a high level of TSH indicate an underactive thyroid, or hypothyroidism.
A good first step for assessing possible thyroid problems is to test TSH levels in the blood. If these are found to be abnormal, your doctor will also likely test your levels for specific kinds of T4 and T3, called free T4 and T3.
If your symptoms seem to indicate thyroid problems, your doctor may test for thyroid antibodies. This can help to identify the most common cause of hypothyroidism—Hashimoto’s thyroiditis. There are two kinds of thyroid antibodies: thyroglobulin antibodies and thyroid peroxidase antibodies. If you have elevated levels of these, it means that you might have Hashimoto’s thyroiditis.
Thyroid hormone replacement
Managing hypothyroidism is generally very straightforward. The most commonly prescribed thyroid hormone replacement, called levothyroxine (Eltroxin, Euthyrox and Synthroid), is available in different strengths. Your doctor will probably start you on a low dose and may gradually increase the dose until your hormone levels normalize and your symptoms are eliminated. Be patient, as it can take several weeks or months for this to happen. If you experience heart palpitations, sleep problems, anxiety, nervousness, sweating or agitation, mention this to your doctor right away. It could mean that your dose is too high.
If your body is not properly converting T4 (the storage form of the hormone that is found in these medications) to T3 (the active form), the symptoms will persist even with hormone replacement therapy. In this case, speak to your doctor and pharmacist about other options that may be available.