Lipodystrophy is a group of conditions in which the body loses or lacks fat tissue in certain areas or throughout much of the body. Some forms also cause fat to accumulate elsewhere. These changes can affect appearance, blood sugar, and other aspects of health. Cambridge University Hospitals

Getting the right diagnosis matters because different forms require different care. A small dent around an injection site, for example, is different from a condition that affects fat tissue throughout much of the body.

Why can losing fat tissue cause health problems?

Healthy fat tissue stores energy and produces hormones, chemical messengers that help regulate how the body works.

When there is not enough functioning fat tissue, fat can accumulate in places such as the liver and muscles. This can make the body respond poorly to insulin, the hormone that helps control blood sugar, and contribute to diabetes. MedlinePlus

Fat tissue also produces leptin, which helps tell the brain how much energy the body has stored. People who lack large amounts of fat tissue may produce too little leptin. That shortage can contribute to persistent hunger and difficulty controlling blood sugar and fats in the blood. NIDDK

What are the different types of lipodystrophy?

Doctors describe lipodystrophy according to where fat is missing and why the condition developed. These descriptions work together.

Where is fat missing?

Generalized lipodystrophy affects nearly the entire body.
Partial lipodystrophy affects certain regions. A person may lose fat beneath the skin of the arms and legs while accumulating fat around the neck or abdomen.
Localized lipodystrophy affects a small area. It can develop after injections, injury, or inflammation and may leave a dent beneath the skin.

Localized fat loss does not automatically mean someone has a condition affecting the whole body. NIH clinical overview, DermNet

Why did it develop?

Generalized and partial forms can have a genetic cause, involving changes in the instructions the body uses to build and maintain its cells. Some are apparent in infancy; others become noticeable later. Having no known affected relatives does not rule out a genetic form. MedlinePlus

Other forms are acquired, meaning they develop without an inherited genetic cause. Some are associated with illnesses in which the immune system attacks the body’s own tissues. Sometimes the cause remains unclear. Cambridge University Hospitals

How does HIV-associated lipodystrophy fit in?

Some people living with HIV experience fat loss, fat accumulation, or both. Two terms describe these changes:

Lipoatrophy: loss of fat beneath the skin, such as in the face, arms, legs, or buttocks.
Lipohypertrophy: increased fat in certain areas, including deep inside the abdomen.

Some older HIV medicines were strongly associated with fat loss. People with HIV can also gain weight for other reasons, so changes need individual assessment. Discuss them with your HIV care team before changing or stopping medication. NIH: HIV and lipodystrophy

What signs and symptoms should be checked?

Unexplained changes in body fat deserve a conversation with a healthcare professional, especially when they occur alongside problems such as:

High blood sugar or diabetes that is difficult to control.
High triglycerides, a type of fat measured in the blood.
Fat buildup in the liver.
Dark, thickened, velvety skin around the neck, armpits, or other folds, which can accompany a poor response to insulin.

Changes may develop gradually. Some related health problems are detected in blood tests before they cause noticeable symptoms. A larger abdomen, lean limbs, or any other finding on its own does not establish a diagnosis. MedlinePlus

When to seek urgent care

Very high triglycerides can cause pancreatitis, inflammation of the pancreas, an organ that helps digest food and control blood sugar. Seek urgent medical care for severe or worsening abdominal pain, especially with vomiting or fever. NIDDK: Pancreatitis symptoms

How is lipodystrophy diagnosed?

A healthcare professional examines the pattern of fat loss, when it began, medical and family history, and signs of problems with blood sugar or fat storage.

Blood tests, earlier photographs, and a medication history can help. Some people also need genetic testing or scans that show how much fat the body has and where it is located. Other causes of weight loss or changes in body shape must also be considered. Clinical diagnostic guidance

A leptin blood test alone cannot confirm or rule out lipodystrophy. Levels can overlap with those of people without the condition, especially in partial forms. Multi-society practice guideline

Preparing for an appointment

Bring a timeline of changes, a list of current and previous medications, available blood-test results, and any relevant family history. Earlier photographs may help if you are comfortable sharing them.

Useful questions include:

Could my changes in fat distribution and other health problems be connected?
Which type of lipodystrophy might explain them, and how would we investigate?
Should I see an endocrinologist, a doctor who treats hormone-related conditions, or another specialist familiar with lipodystrophy?
Would genetic testing or advice for family members be useful?
If I have lipodystrophy, what should we monitor, and what is each treatment intended to improve?

People living with HIV should involve their HIV care team.

How is lipodystrophy treated?

Care aims to manage the problems the condition causes. It may include nutrition support, physical activity suited to the person’s health, medicines, and monitoring of blood sugar, blood fats, and organ health. Multi-society treatment guideline

Nutrition and ongoing care

A nutrition professional familiar with lipodystrophy can help develop a practical eating plan. General weight-loss advice may not address the combination of abnormal fat storage, persistent hunger, and other medical needs.

Physical activity can help the body respond to insulin, but recommendations should account for heart, muscle, or other health problems. Medicines may also be needed for diabetes or high triglycerides. Needing medication does not mean someone has failed at diet or exercise. Cambridge University Hospitals

Metreleptin: replacing leptin when too little is available

Metreleptin, sold in the United States as Myalept, is a version of leptin manufactured for medical use and given by injection. It replaces the activity of this hormone when the body produces too little.

Its US approval covers problems caused by leptin deficiency in generalized lipodystrophy, whether the condition is present from birth or develops later. It is used alongside a recommended diet.

Metreleptin does not rebuild missing fat tissue. According to the US prescribing information, its safety and effectiveness for partial lipodystrophy have not been established, and it is not indicated for HIV-associated lipodystrophy.

Because of serious risks, doctors and pharmacies must participate in a special safety program. The body may produce antibodies that prevent the medicine, and sometimes its own leptin, from working properly. The prescribing information also warns about lymphoma, a blood cancer reported in people with acquired generalized lipodystrophy both with and without treatment. Myalept prescribing information

Tesamorelin: reducing excess abdominal fat in adults with HIV-associated lipodystrophy

Tesamorelin is a prescription medicine sold under the Egrifta brand. It tells the body to release more of its own growth hormone and can reduce excess fat deep inside the abdomen, around internal organs.

Its approved use is for adults with HIV-associated lipodystrophy. It is not approved for general weight loss and does not restore fat lost from the face or limbs.

Treatment requires assessment and monitoring. Risks include increased blood sugar and fluid retention. It must not be used in people with active cancer. Our tesamorelin page explains the medicine in more detail. Egrifta WR prescribing information

Addressing changes in appearance

For some people, specialist procedures such as fillers or fat transfer may help with particular changes in appearance. These procedures do not replace care for blood sugar, blood fats, or other health problems. Cambridge University Hospitals

Support for patients and families

Living with a visible condition while managing ongoing medical care can be difficult. Support might mean help organizing appointments, assistance with treatment costs, counseling, or conversations with people who have similar experiences.

If you are supporting someone with lipodystrophy, ask what would help. Listening without commenting on weight or appearance can be a good start. Persistent hunger can be part of the condition, so advice that assumes a lack of willpower may overlook the underlying problem.

These resources offer places to learn more:

Lipodystrophy United: Patients and Families provides educational resources, community connections, and personal stories. Its Pocket Med videos, created with Lipodystrophy UK, cover changes inside and outside the body, hormones, and daily life.
Lipodystrophy UK offers information and support for people with the condition and their families. Treatment approvals and access vary by country.
Cambridge University Hospitals: Lipodystrophy explains the condition and care options from a specialist hospital service.
NIH: HIV and Lipodystrophy addresses questions specific to people living with HIV.

Other patients’ experiences can offer perspective and practical support. Individual treatment decisions should be made with your care team.

Educational Notice: This information can help you understand lipodystrophy and prepare for conversations with healthcare professionals. It cannot confirm a diagnosis or determine which treatment is right for you. Products intended for research do not replace prescribed medical care.

Author: TaylorTides
Medical review status: Not reviewed by a licensed clinician
Research reviewed: October 4, 2026

Taking the next step

If you have noticed unexplained changes in body fat, discuss them with your healthcare professional along with any related concerns. If you already have a diagnosis, ask whether your care plan addresses both medical needs and daily life. Understanding your specific condition is the starting point for finding appropriate care and support for lipodystrophy.