Lipodystrophy (Body Shape Changes)

What Is Lipodystrophy?

Lipodystrophy is a disturbance in the way the body makes, uses and stores fat. It can result in fat loss or gain in various parts of the body. Sometimes these changes are hard to see, and sometimes they can have a dramatic effect.

There are two types of lipodystrophy:

• Lipoatrophy (fat loss)

• Lipohypertrophy (fat accumulation)

Doctors first began to notice lipodystrophy in HIV-positive people in the late 1990s, after modern HIV treatment became available -- that is, treatment using a combination of three or more HIV meds. However, there's still a lot of debate over just how much HIV medications are to blame for lipodystrophy.

Testing for Lipodystrophy

Do you feel like, ever since you began HIV treatment, your clothes fit differently, or that specific parts of your body seem bigger or smaller than they used to be? You may be right. Lipodystrophy is real, and your own instincts may be correct. In fact, studies show that your ability to detect changes in the shape of your body is about as good as your doctor's ability to detect those changes using various medical techniques.

So how can you find out whether you have lipodystrophy? If you suspect you have lipodystrophy or before you start taking HIV meds, make sure your doctor measures key parts of your body, such as your arms, legs, neck, belly, waist and thighs, with a nonstretch tape measure. Your doctor may also use a "body fat caliper," which looks sort of like a cross between a ruler and a large, fancy pair of tweezers. By periodically measuring the fat in different parts of your body, you can see whether there have been any changes since you started HIV treatment.

There are plenty of more advanced methods doctors can (and do) use to measure body fat, including expensive, high-tech scans (such as a DEXA scan, an MRI and computed tomography) and electricity-based tests (such as a bioelectric impedance analysis, or BIA). These tests are painless, but they're also generally no more reliable than body fat caliper tests -- or even your own observations. Regardless of the method you use to track your body fat, though, be sure to talk about it with your doctor, preferably before you start taking meds.

Lipodystrophy Buzz Words

Doctors and people with HIV use many different terms to describe certain types of lipodystrophy. Here are some of the more common terms:

• Buffalo hump refers to a large, hard lump of fat that can develop at the top of the back, just below the neck.

• Facial wasting is the loss of fat (lipoatrophy) in the face, especially the cheeks and the temple.

• Gynecomastia is an increase in breast size that can occur in men and women.

• Peripheral lipoatrophy is the loss of fat in the arms, legs and buttocks.

• Visceral lipohypertrophy is the accumulation of fat around the organs of the belly, making the belly look big and swollen. In the past this was also called Crix Belly because it was first noticed in people taking the drug Crixivan.

• AIDS wasting syndrome (aka wasting) is often confused with peripheral lipoatrophy, but the two are extremely different. People with lipoatrophy lose fat in specific parts of the body, such as the arms or legs. People with AIDS wasting syndrome lose fat and muscle from all over their body. And, while lipoatrophy is typically seen in people who are on successful HIV medications, AIDS wasting syndrome is usually seen in people who are not benefiting from their HIV medications or who are not on HIV treatment and have been diagnosed with AIDS. In fact, AIDS wasting syndrome is one of the symptoms of advanced HIV disease.

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