Lipodystrophy

by Jean Kressy, MS, RN, with Christine Wanke, MD, and Jül Gerrior, RD

What is lipodystrophy?

Lipodystrophy, also called fat redistribution syndrome, is a condition that often occurs in HIV-positive people and is characterized by changes in body shape and metabolism. Body shape changes may include the accumulation and/or loss of fat, which can affect appearance. Metabolic changes may include increased resistance to insulin and abnormally high levels of blood cholesterol and triglycerides. These do not all necessarily occur together; each may occur separately or in any combination.

What causes lipodystrophy?

Health experts are not sure why HIV-positive people develop lipodystrophy, but they think it may be related to antiretroviral medications they take to control their disease. In addition to medications, factors including a person’s age, gender, weight, genetic predisposition, length of time he or she has been HIV-positive, and severity of the disease may be linked to the development of lipodystrophy.

What body shape changes can occur with lipodystrophy?

Fat accumulation:
The most visible signs of lipodystrophy and the ones that people may notice first are deposits of fat at various sites on their bodies. The two places where fat generally accumulates are the back of the neck (called ‘buffalo hump’) and around the abdomen (truncal obesity). Increased breast size, especially in women, may also occur. However, the changes in fat distribution are not necessarily the same in everyone.

Fat loss:
Loss of body fat, called lipoatrophy, is another characteristic of lipodystrophy that affects appearance. The most common places where people lose fat are in their cheeks, making their faces look thinner, and in their buttocks, arms and legs. When fat loss occurs in the arms and legs, veins may be more visible.

The loss of body fat that occurs with lipodystrophy is not the same as the weight loss that happens with wasting. People with wasting lose weight as well as muscle and fat. In lipodystrophy, there are alterations in body fat but not necessarily a change in weight. Some people with lipodystrophy experience both fat accumulation and fat loss. In some instances, body shape changes may affect a person’s ability to perform daily activities, such as exercising, sleeping, and even breathing.

What metabolic changes can occur with lipodystrophy?

Insulin resistance:
Insulin, a hormone produced by the pancreas, is responsible for transporting sugar (also called glucose) from the blood into the cells where it is used for energy. Normally after eating, the amount of glucose in the blood increases; this signals the pancreas to secrete insulin, which in turn prompts the cell to absorb the glucose. In short, insulin is the substance that allows cells to absorb glucose from the blood. Once it enters the cells, glucose is used by the cells as fuel. In insulin resistance, either insulin is not doing its job or the cells are unable to absorb glucose. The result is that glucose may continue to rise in the blood, and if not treated, can lead to diabetes. Insulin resistance may be related to some of the antiretroviral medications used to treat HIV, and/or to a genetic predisposition in the individual.

Dyslipidemia:
Dyslipidemia, or higher than normal amounts of lipids (cholesterol and/or triglycerides) in the blood, is another metabolic change which often occurs in HIV-positive people with lipodystrophy. It also may be related to some of the antiretroviral medications used to treat the disease, and/or to genetic predisposition.

In general, anyone with dyslipidemia may be more likely to develop cardiovascular disease. However, studies show that unless HIV-infected people with high blood lipids have other risks that increase heart disease, such as smoking, obesity, or high blood pressure, their chances of heart attack are no greater than HIV-negative people. For more information about dyslipidemia and cardiovascular disease, see the section on Cardiovascular Disease Risk.

How is lipodystrophy treated?

Although lipodystrophy includes a variety of body shape and metabolic changes, a single intervention can often control more than one symptom. For example, small research studies have shown that when people with lipodystrophy eat more fiber, they may lose some abdominal fat and may become less resistant to insulin. Exercise also provides more than one benefit; in addition to losing fat, people who exercise may have lower triglycerides and may be less insulin resistant.

Diet:

Instead of focusing on specific foods, some physicians advise people with lipodystrophy to follow an eating plan based on the Mediterranean diet. The diet, also recommended to healthy people and those at risk for heart disease, is low in fat, especially saturated fat, and refined sugars (such as candy, soft drinks, cakes, cookies, ice cream) and alcohol, and high in fiber-rich whole grains, fruits, and vegetables. Fat, especially saturated fat, increases blood cholesterol and refined sugars, and alcohol increase triglycerides. Fiber, on the other hand, may control insulin resistance and may help decrease abdominal fat.

Nutrition experts say that the kind of fat eaten is as important as the amount. Omega-3 fatty acids, for instance, are recommended, but saturated fats (fatty meat, poultry with skin, butter, whole-milk dairy foods, and coconut and palm oils) should be limited. In addition to saturated fats, trans fats, found in some stick margarines and Crisco, which are solid at room temperature, should be avoided. Many packaged foods, especially baked goods, contain trans fats to prolong their shelf lives. Read labels; if one of the ingredients has the word ‘hydrogenated,’ it means it contains trans fats. When choosing fats, look for tub or soft margarines, which do not contain trans fats, and unsaturated oils like canola, corn, and olive. Because fish is an excellent source of heart-healthy omega-3 fatty acids, nutrition experts recommend eating fish regularly. Although all seafood contains omega-3 fatty acids, the best sources are fatty fish like salmon, albacore tuna, and mackerel.

Fiber and nutrient-packed whole-grains, legumes, and fruits and vegetables, the cornerstones of Mediterranean eating, should play leading roles in a healthful diet. If you’re not used to eating fruits and vegetables, the recommended five servings of fruits and/or vegetables a day may seem overwhelming—but once you get into the habit, it’s very achievable. In addition to snacking on fruits and eating vegetables and salads with meals, fruits and vegetables are easy to add to everyday foods. For example, slice a banana on breakfast toast or cereal, stir berries into a cup of yogurt, layer sandwiches with tomato or roasted pepper, stir a can of beans into a pot of vegetable soup or store-bought spaghetti sauce, tweak the proportion of meat and vegetables in a stew in favor of the vegetables, or make yourself a fruit smoothie. When shopping for whole-grains, read labels and look for the words, “bran” or “whole-grain” or “whole-wheat” on the label.

See “Building a High Quality Diet.”
See “Fiber content of selected foods.”
See “Omega-3 fatty acids.”

Exercise:

Progressive resistance exercises (weight training), which are recommended to build muscles in HIV-positive people with wasting, may reduce triglycerides, decrease insulin resistance and decrease abdominal fat in people with lipodystrophy. Regular weight lifting and push-up routines, either in a gym or at home, are excellent, but if this is not possible, incorporate activities like walking, gardening or housecleaning into your day. Any activity that gets you up and moving counts.

Aerobic exercises, which raise pulse rate and increase blood flow to muscles, including the heart, are also recommended for people with lipodystrophy. Moderate to vigorous aerobic exercise, such as fast walking, running, or using a treadmill, combined with resistance exercises, have increased strength and fitness, improved blood cholesterol and insulin resistance, and reduced fat in HIV-positive people without negatively affecting their viral loads or CD4 counts.

For people who are not used to exercising, experts suggest they start slowly and gradually increase the amount of the time they exercise. For some people a regular routine works best; others like to incorporate exercise into their daily schedules or to combine it with a regular workout. The bottom line is to exercise in any way that works for you. Anyone with concerns about cardiovascular disease or over the age of 45 should consult with their physician before beginning an exercise program.

Medications:

Although antiretroviral medications may be linked to the development of lipodystrophy, there are no data that suggest that stopping the medications improves body shape changes. Instead physicians may recommend diet, exercise, and medicines targeted to the body shape and metabolic changes associated with lipodystrophy.

Growth Hormone:
Growth hormone, used to treat HIV-positive people with wasting, may also be given to people with lipodystrophy, although it is not currently approved this use. In research studies, growth hormone has successfully lowered blood triglycerides and reduced fat abdominal fat and fat behind the neck. However, once growth hormone is stopped, the abnormalities return. Furthermore, because growth hormone may worsen insulin resistance, it’s not for everyone with lipodystrophy. Investigators need to learn more about its safety over a long time, and like all drugs, growth hormone has multiple side effects.

Testosterone:
Because testosterone replacement has been used to reduce fat in HIV-negative men, researchers are studying its potential for treating lipodystrophy. However, at the moment it is not being used to reverse the fat accumulation that occurs in lipodystrophy.

Metformin:
Metformin, which is used to treat diabetes, is also being prescribed for people with lipodystrophy. In individuals with abnormal glucose tolerance, metformin may improve insulin resistance, and may result in weight loss, including abdominal fat loss. Other benefits may include a drop in blood pressure and a decrease in blood triglycerides. Patients taking metformin are monitored by their physicians for side effects; there is particular concern about liver toxicity.

Anyone who is concerned that he or she may have changes associated with lipodystrophy should discuss this with their healthcare provider. It may be possible for them to refer you to an appropriate research study or to a specialist who has an interest in the management of the syndrome, if they do not have particular expertise in this area.