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My younger sister has generalized lipodystrophy too. Were both muscular and have big hands and feet. Growing up, we were both taller than our classmates. Kids used to call us names.

Recognizing signs and symptoms of GL

In GL, there are signs and symptoms that you may notice, and others that only your doctor may be able to detect.

In this section, we will cover the most common signs and symptoms of GL, but it is important to know that you (or your child) may not experience all of what is covered here. In fact, no 2 people with GL will experience the disease the same exact way. Some people with GL will experience only a few signs and symptoms, while others will experience many. Some people may experience these earlier in childhood, while others may not see them until later in life. The disease can be different in each person affected by it, which can make it difficult to diagnose.

Faces of GL: Different people, different GL symptoms

Dena and Raeya were always hungry and had veins that stuck out, but all of their GL symptoms weren’t the same. Play video to learn more.

Things you cannot see

When the body does not have enough leptin, certain metabolic processes are not controlled. This can lead to serious complications. Click on or hover over each icon below to learn about these complications.

    • High triglycerides

    High triglycerides

    High triglycerides

    High triglycerides are a form of fat in the blood. High triglycerides may be associated with pancreatitis, or inflammation of the pancreas.

    • Insulin resistance

    Insulin resistance

    Insulin resistance

    When the body does not respond to its own insulin, this is called insulin resistance. Over time, the body’s inability to produce enough insulin to overcome insulin resistance can lead to diabetes.

    • High blood sugar

    High blood sugar

    High blood sugar

    High blood sugar may indicate diabetes, which may increase your risk of kidney disease, eye disease, heart disease, and nerve damage, especially in your feet and legs. This is also called high blood glucose.

As a result of their extreme hunger, people with GL may eat a lot. Because of this, extra fats and sugars from the food they eat can contribute to these problems, resulting in a continuous cycle.

If I cannot see these complications, how do I know they are happening?

Blood tests can show what is happening inside your (or your child’s) body. Read below to learn more about some common blood tests and what they can reveal about GL.

Triglyceride levels: how to measure them and what they mean

Triglyceride levels are measured through a fasting triglycerides blood test. A fasting triglycerides blood test is performed after not eating, or fasting, for at least 8 hours, and measures the level of fat in the blood. It is important to fast because fats from foods eaten within 8 hours before the test can affect the test results. The table below explains different triglyceride ranges and what they mean in people of different ages.

Triglyceride levels (mg/dL)
In children younger than 10 years In children 10-19 years Adults What they mean
Less than 75 Less than 90 Less than 150 Healthy triglycerides
75 to 99 90 to 129 150 to 199 Borderline-high triglycerides
Greater than or equal to 100 Greater than or equal to 130 Greater than or equal to 200 High triglycerides
Greater than 500 Greater than 500 Greater than 1000 Very high triglycerides

High triglycerides have been associated with inflammation and swelling of the pancreas.

Blood glucose levels: how to measure them and what they mean

Blood glucose levels are typically measured using 2 common blood tests: a fasting blood sugar test and an A1C test.

A fasting blood sugar test, also known as fasting plasma glucose (FPG) test, is performed after not eating, or fasting, for at least 8 hours and measures glucose levels in the blood at the time of the test. It is important to fast because sugars from foods eaten within 8 hours before the test can affect the test results. The table below outlines what different fasting blood glucose measures mean.

Blood glucose level (mg/dL) What it means
70 to 99 Healthy fasting blood glucose level
100 to 125 Fasting blood glucose level in people at risk for getting diabetes
Greater than or equal to 126 Fasting blood glucose level in people who have diabetes

An A1C test is a blood test that measures an average blood glucose level for the past 2 to 3 months. This may be a good test for a person with GL because it does not require 8 hours of fasting. The table below explains what different A1C measures mean.

A1C measure (%) What it means
Less than 5.7 Healthy A1C
5.7 to 6.4 A1C in people at risk for getting diabetes
Greater than or equal to 6.5 A1C in people who have diabetes

In the next section, Getting to a Diagnosis, learn about the different specialists you may see and how to talk to them about the signs and symptoms of GL, as well as important blood tests and what they mean. You play an important role in getting the appropriate diagnosis.