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HIV/AIDS Resource Center for Women
Michelle Lopez Alora Gale Precious Jackson Nina Martinez Gracia Violeta Ross Quiroga Loreen Willenberg  
Michelle Alora Precious Nina Gracia Loreen  

Treatment Issues for Women

November 2002

A note from TheBody.com: Since this article was written, the HIV pandemic has changed, as has our understanding of HIV/AIDS and its treatment. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!

Hormones and HIV

Hormones are chemicals that act like messengers, traveling around in our body between the glands that make them and the cells, organs, and proteins they act upon. Hormones play an important role in the overall health of women living with HIV. Some hormones help specific organs -- like your liver -- work by speeding up or slowing down chemical reactions. Others act on cells, proteins, and tissues, triggering our growth, metabolism, sex drive, and fertility.

Estrogen, progesterone, and testosterone are three of our main sex hormones. These hormones are also called steroid hormones and regulate many aspects of our growth. Your ovaries make progesterone and most of the estrogen in your body. Testosterone is made in your adrenal glands (just above your kidneys) and in your ovaries. Together, these three hormones influence your sexual desire, behavior, and your ability to have children -- along with your mood and overall body composition. Levels of estrogen, progesterone, and testosterone get lower as we age.

Balance between these three hormones is very important, since changes in the amount of one can affect levels of the others. For example, a drop in estrogen can lead to altered levels of testosterone, progesterone, or related steroid hormones such as DHEA. In order for estrogen, progesterone, and testosterone to do what they're supposed to, your body needs to be able to make them regularly and get rid of them when you don't need them anymore. Otherwise, many bodily functions can be disturbed.

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How Does HIV Change the Picture?

Studies have shown that HIV itself can affect the body's ability to produce and maintain hormone levels. Changes in the balance of estrogen, progesterone, or testosterone can affect HIV-positive women in many ways. In some cases, hormonal imbalance may lead to:

  • Menstrual irregularities
  • Weight loss
  • Changes in mood and behavior, including sleep pattern changes
  • Decreased bone density
  • Fatigue
  • Depression
  • Decreased sexual feelings or difficulty having orgasms
  • Vaginal changes (vagina becomes thin, dry, and may tear easily)
  • Difficulties getting pregnant or having a healthy pregnancy

If you're having any of these symptoms, ask your doctor about the possibility of hormone problems. Too often, we dismiss things like fatigue and sexual problems as just part of living with HIV -- even though they greatly affect our quality of life. Without follow-up, important hormone problems (and solutions) can be missed.

You may want to consider an initial blood test to measure your hormone levels. This is not usually part of routine care and can be expensive. But an initial measurement (called a baseline) -- either when you're first diagnosed or later -- may provide a useful starting point for you and your provider to work from in the future.


Testosterone

Many people think of testosterone as only a male hormone, but it's also extremely important in women. Testosterone is critical for healthy skin, bones, organs, and muscle. Without it, we'd have a hard time maintaining our sex drive, muscles, and energy levels.

HIV can lead to low testosterone levels in women. Many positive women with low testosterone also have low levels of DHEA, a hormone used by your body to make testosterone. Low testosterone is more common in women with low CD4s, women experiencing wasting, and postmenopausal women. In addition to HIV, certain drugs used to treat HIV-related conditions -- such as Cytovene (ganciclovir), Megace (megestrol acetate), Nizoral (ketoconazole) and possibly others -- can also lower testosterone levels.

  • Because we generally have so much less testosterone than men, our bodies are sensitive to smaller degrees of change in testosterone level. A small drop in testosterone [10-15 ng/dL] caused by problems in the immune system may not be noticed by a man, but could result in clear symptoms for a woman.
  • When testosterone is low, you can feel tired, depressed, moody, or weak, or you may not feel like having sex much at all. Since low testosterone can also increase your risk for weight loss -- including muscle loss -- it's important to identify and think about managing any testosterone deficiency.


Checking Your Testosterone Levels

Testosterone circulates in our blood in three forms. Two forms -- about 98% -- are bound to proteins. Most of this testosterone is inactive. The remaining 1-2% is not attached to any proteins and circulates freely in your body. This type of testosterone -- called free testosterone -- is active, meaning it's available for immediate use by your body. Total testosterone and free testosterone are the two standard blood tests used to measure testosterone levels in women. Total testosterone measures both the free and bound testosterone in your blood.

Even though Medicaid and private insurance cover both tests, it sometimes takes work to get these tests ordered. Most doctors have limited experience measuring testosterone levels in women. Since there's not a lot of data on testosterone replacement in positive women, many doctors are unfamiliar with the use of testosterone or anabolic steroids to treat weight loss, low sex drive, or other HIV-related symptoms in women. You may need to get a second opinion from an endocrinologist or find a provider who's willing to listen and has the necessary experience. Regardless of where you get care, always remember you have a right to request tests you feel are necessary for your health.

Testosterone levels vary from hour to hour, so have your blood drawn at the same time of day (ideally the morning), using the same lab whenever possible. Since free testosterone levels are the ones most commonly affected by HIV, make sure to ask for a "free testosterone test" -- they're not automatically done. In HIV, the ratio between your free and total testosterone levels is important. Testosterone levels can be affected by lots of things, including other female hormones. If your testosterone levels are low, your doctor may need to compare them to your other hormone levels to figure out what's going on.


What's a Normal Testosterone Level for Women With HIV?

That's complicated. There's still debate about what's considered a normal testosterone level for a woman. Without clear guidelines for what's normal, figuring out if you're low can be tricky. Plus, what's low for you may be high or low for another woman.

Most of the major labs report very wide reference ranges for normal. These ranges can vary significantly between labs. For example, one lab lists total testosterone range as 15-70 ng/dL for women age 20-39 and 4-70 ng/dL for women age 40-59. Another uses 15-70 ng/dL for premenopausal women and 5-51 ng/dL for postmenopausal women. Even though both labs list 15 ng/dL as the low end of the range, some doctors feel that any level below 20 ng/dL can be too low for a woman to maintain her sex drive and energy level.

For positive women, it often takes more than one of these measurements, along with symptoms, to diagnose a low or deficient testosterone level. So, in addition to checking total and free testosterone levels, don't forget to watch how you're feeling -- especially your sex drive, energy level, overall mood, and your weight. They're just as important! Regardless of what's normal for you, any unexplained drop in your testosterone levels should be investigated.


Treatment and Replacement Options

While men with HIV have been offered testosterone for years to treat HIV-related weight loss and low sex drive, there is limited experience with testosterone replacement in positive women. In the last few years, small studies have shown that positive women who are treated for low testosterone often see their levels climb back to normal and many of their symptoms partially or fully resolve. Many women using testosterone report improved energy, sex drive, mood, and better quality of life.

So far, research suggests that replacement with testosterone or anabolic steroids (drugs that can help build muscle without causing masculine traits) may be especially important options for women showing signs of wasting or low weight, body composition changes, and/or bone density loss. We still need to learn more about replacement dosing and the possible long-term effects of testosterone use in women with HIV. In the meantime, if you are considering using testosterone, make sure to talk through your decision with a provider who has experience in this area.

Testosterone supplements come in prescription injections, tablets, patches, gels, and creams. Gels and creams on the market don't have specific approval for use in women, but some women use the gels or creams prescribed for men, in smaller amounts. Each formulation has pluses and minuses in terms of cost, ease of application, and its ability to maintain consistent testosterone levels in your body over time. Too much testosterone in women can cause mood changes, a swollen clitoris, and more facial hair. If you take testosterone, it's important to minimize side effects while keeping your testosterone levels in the normal range. Replacement options include:

  • Oral: Low-dose testosterone pills are available. Oral testosterone is processed through your liver and should not be taken if you have elevated liver enzymes, liver complications, or gall bladder disease. If you have hepatitis, consider testosterone patches, gels, or creams to reduce stress to your liver.
  • Intramuscular: Injections are rarely used in women. Injections are usually administered twice a month. Testosterone levels are highest when you first inject, then fall over time. As seen in men, long-term use of injections may cause changes in your body's ability to make testosterone.
  • Topical: Gels, creams, and patches are also available. Patches are like small Band-Aids that you apply directly to your skin. They need to be changed often -- every day to every few days. Patches deliver consistent testosterone levels to your bloodstream, but are not available in a range of doses. With creams, your provider can set the dose to control the precise amount of hormone you receive. Testosterone cream is sometimes used to treat low sex drive and vaginal dryness in women.

Very little is known about the best replacement doses for positive women. If you're considering using testosterone, you may want to begin with a very low dose and have your testosterone levels checked frequently to see if you need more or less testosterone. It may take a little work in the beginning to find the most appropriate and comfortable dose for your body. Since excess use of testosterone over long periods of time can sometimes lead to problems with blood fats and liver function, it's important to have any use of replacement dosing monitored by an experienced provider.


Estrogen and Progesterone

Estrogen regulates your ovaries, causes monthly changes in your uterus, cervix, vagina, and breasts, and is important for vaginal and emotional health. Estrogen also plays a role in insulin release, along with other metabolic and cardiovascular functions. Progesterone -- nicknamed the "feel good" hormone -- affects your mood, sex drive, and metabolism and is key during pregnancy. Progesterone opposes the effects of estrogen in different parts of your body, so balance between these two hormones is very important. Too much progesterone, for example, can lead to mood changes and depression in some women.

Levels of estrogen decline as a normal part of the aging process. But there's conflicting evidence about whether HIV itself and antiretroviral drugs used to treat HIV can also lead to estrogen deficiency and/or health conditions associated with low estrogen such as early menopause or bone loss. We know that estrogen and progesterone communicate with cells of the immune system, so it's possible that HIV-related changes in the immune system can affect the balance of estrogen, progesterone, or both. It's often hard to pinpoint the reason for changes in hormone levels, since many factors, including age, street drugs, medications, nutritional deficiencies, and liver problems can also affect the way our bodies make, process, and eliminate these hormones.

Where estrogen is low or blocked, we can be more prone to vaginal infections, missed periods, and changes in vaginal tissue. With years of low estrogen, a woman's risk increases for high cholesterol and triglycerides, heart damage, and other complications like bone loss. Since HIV and drugs used to treat HIV can result in some of these same conditions, it's important to identify problems with estrogen and consider ways to manage them, if possible.

Many medications used to treat HIV-related conditions in women contain progesterone and can block estrogen production in your body. These include Megace (megestrol acetate), contraceptives like Norplant and Depo-Provera, and progesterone-only birth control pills. If you're using any of these treatments for an extended period of time, you'll need to monitor your hormone levels regularly.

Ask your doctor to check your hormone levels if you: are missing periods; have shorter or longer menstrual cycles; worsening pre-menstrual symptoms; vaginal dryness; problems sleeping; fatigue; or hot flashes. Since estrogen is so important for bone health, you may also want to check your estrogen levels if you are experiencing bone density changes or are at risk for these changes.


Checking Hormone Levels

LH (lutenizing hormone), FSH (follicle stimulating hormone) and estradiol (a type of estrogen) are three hormones that regulate our periods and our ability to get pregnant. Blood tests of LH and FSH are often used to determine whether you're entering menopause, but these two tests alone won't tell the whole story in HIV. If you're having levels checked, it's important to go the extra mile and check estrogen, and consider checking progesterone -- either through blood or saliva tests. These tests are not routinely done, and your doctor may need to send your blood to a special lab. Since the quality of tests can vary a lot, try to use the same lab whenever possible.

Keep in mind that our hormone levels normally vary a lot throughout a single menstrual cycle. For example, estrogen levels are highest during the mid part of your cycle, while progesterone levels peak later, somewhere around day 21. So timing is important when you get tested. To check estradiol and FSH levels, have blood drawn on days two through four of your period. Ask your provider about the best time to check your LH level.

In order to get a sense of what's normal for you, you may need to measure estrogen several times throughout a month or measure estrogen, LH, and FSH levels over several menstrual cycles. Be sure to have your blood drawn at the same time of day and on the same day of your cycle each time you're tested (day two or four of your period, for example). Otherwise, results can be misleading.

Estrogen levels vary significantly with age, stress, medication use, hormone replacement therapy, and from woman to woman. As with testosterone, we don't have great guidelines for what's normal. Plus, it's possible to have a normal estrogen level but still have imbalances with progesterone and still experience symptoms. So again, paying attention to how you feel is important. If your FSH level is high (above 20 miu/ml) for more than several months, you may be approaching menopause.


Hormone Replacement Therapy in HIV

Hormone Replacement Therapy (HRT) refers to using estrogen, progesterone, or both to restore balance to your hormone levels. HRT is most commonly used to treat: menopausal symptoms like hot flash and vaginal dryness; heavy or irregular menstrual bleeding; to restore progesterone and estrogen levels around the time of menopause; and to regulate fat, bone, or muscle composition.

Most of what we know about the risks and benefits of HRT comes from studies of HIV-negative women. But many positive women use either hormonal contraceptives or HRT to correct HIV-related imbalances in hormone levels and to relieve symptoms before and after menopause. Some studies have shown that positive women who start HRT when tests show a need experience more consistent sleep, higher energy level, better mood, and improved quality of life. The longer term benefits and risks of HRT in positive women have not been fully studied.

It's important to realize that long-term use of HRT carries risks for health complications in some women. These may be more or less significant for you, depending on many individual factors. Oral estrogen is processed through your liver and gall bladder and is not recommended if you have liver or gall bladder disease. If you have a history of -- or are at known risk for -- diabetes, uterine fibroids, or blood clots, you'll need to carefully consider whether HRT is safe for you. When used without progesterone, estrogen can increase a woman's risk for uterine cancer, so it's important to take both if you still have a uterus. Long-term use of estrogen therapy has also been linked to an increased risk for certain forms of breast cancer. Women who have had breast cancer should not use estrogen.


Replacement Options

Estrogen and progesterone replacements come in many forms. The type of replacement you choose plays a big role in how well you tolerate HRT. When choosing, you and your provider should consider your replacement needs, your ability to tolerate different side effects, your family medical history, the health of your vagina, cervix, and uterus, and other individual factors like your weight. Replacement options include:

  • Oral: Tablets are commonly used by women who need to replace estrogen or progesterone levels throughout the body. Tablets are absorbed by your liver and intestinal tract, requiring higher doses than non-oral formulations. Tablets come in many different doses, including combined formulations for women using both estrogen and progesterone. If you're considering tablets, you may want to start with the lowest possible dose. Some pharmacies (called compounding pharmacies) can make lower-dosed tablets for women who need smaller amounts.

    Most estrogen and progesterone tablets on the market are synthetic versions of these hormones. For example, birth control pills contain synthetic estrogen, progesterone, or both. Bio-identical types of estrogen and progesterone replacements (hormones derived from plant sources that are more similar to the type your body makes) are also available and may be less likely to cause side effects.

  • Creams: These are applied directly to the skin, such as on your upper thigh, abdomen, or vagina. With creams, the hormone is absorbed directly into your bloodstream and doses tend to be much lower than with tablets. Creams are more expensive, but useful since your provider can set the exact dose to control how much hormone you receive.

    Progesterone creams can be used alone (to restore levels for women who need progesterone but not estrogen) or alongside estrogen creams. Estrogen creams may contain one, two, or three types of estrogen. They can be used either to replace low estrogen levels throughout the body, or to treat vaginal dryness and atrophy. Creams applied to your vagina for symptom relief do not provide consistent enough levels in the body to protect against bone loss or other complications.

  • Patches: Like creams, patches bypass your digestive system and are a safe alternative to tablets for women with liver or gall bladder disease. Patches look like small Band-Aids and can be worn anywhere (on your thigh, stomach, or butt). They need to be changed every 3-7 days, sooner for some women. Patches deliver consistent hormone levels into the bloodstream but are not available in a range of doses.

  • Injections: Progesterone injections are sometimes given as an alternative to birth control pills. When used to prevent pregnancy, Depo-Provera (a synthetic progesterone) is given by injection once every three months.

Whether you're using creams, patches, or tablets, HRT regimens and schedules vary depending on your need for replacement. Progesterone needs to be used at least 12 days of the month to be effective. Some women use estrogen daily, with progesterone for 12-14 days of the month. Others use estrogen and progesterone every day, without a break.

There are many questions about using HRT in positive women including: whether or not to start; the right dose/schedule to minimize side effects; how long to continue HRT; and interactions between hormone replacements and HIV treatments. So far, unless you're using the pill, there are no different dosing recommendations for using HRT along with HIV regimens. Researchers are currently studying possible interactions between antiretrovirals and different HRT regimens. If you're considering HRT, it's extremely important to have a full health evaluation -- including a thorough physical exam -- by both your HIV provider and your gynecologist to determine whether HRT is a safe option for you.


Alternatives to HRT

Many prescription and non-prescription alternatives exist for some of the symptoms of hormone problems. If you're seeking bone protection but can't use estrogen, two types of drugs, biphosphonates and selective estrogen receptor modulators (SERMs), provide protection against bone loss without the added possible risk of breast and uterine cancer. Keep in mind these drugs won't help with hot flashes, vaginal dryness, or any other symptoms of low estrogen (see "Bone Health").

There are also non-prescription remedies for pre-menstrual and menopausal symptoms. Soy contains natural estrogens, and soy products like soymilk, soybeans, and tofu may have some role in symptom management. Increasing the amount of omega-3 fatty acids in your diet (found in eggs, salmon, trout, walnuts) or by supplement (with products such as evening primrose oil) may help with menstrual cramps, bloating, swollen breasts, and mood changes. Some women report that magnesium can help with cramps and irritability; vitamin B complex or calcium with bloating; and vitamin E with hot flashes or swollen breasts. In addition, getting enough sleep, regular exercise, acupuncture, and/or yoga may provide some relief from pre-menstrual and menopausal symptoms.

If you're thinking about using any of these supplements, be sure to consult your providers. Your doctor can help you figure out the best supplement dose and may have important information for you about interactions between supplements and other medications you're taking.


A note from TheBody.com: Since this article was written, the HIV pandemic has changed, as has our understanding of HIV/AIDS and its treatment. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!



This article was provided by AIDS Community Research Initiative of America. Visit ACRIA's website to find out more about their activities, publications and services.
 
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