For people living with congenital adrenal hyperplasia (CAH), managing weight can be an ongoing challenge. Research in multiple countries shows that people with classic CAH have higher rates of obesity than people without the condition.

Weight gain may be related to a number of causes, such as hormone imbalances, insulin resistance, or medications used to treat CAH. Understanding why weight gain happens can help you work with your healthcare team to find strategies that support your health and quality of life.

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How CAH Treatment Can Affect Weight

Glucocorticoid medications are an important part of treatment for many people with classic CAH. These daily medications, such as hydrocortisone or prednisone, replace missing cortisol and help control excess androgen production.

However, over time, high replacement doses of glucocorticoids can lead to side effects like slower growth in children and weaker bones in adults. They may also affect weight by increasing appetite, especially with longer-acting glucocorticoids such as prednisone.

People with CAH may have a higher risk of heart and metabolic problems, especially those with classic CAH. This can include insulin resistance, changes in body composition, and other metabolic effects like high blood pressure and hardening of the arteries.

Because of these potential side effects, CAH treatment can be a careful balancing act. For people who need glucocorticoids, the dose needs to be enough to meet treatment goals — such as replacing cortisol and controlling excess androgens — while avoiding overtreatment.

Does Nonclassic CAH Cause Weight Gain?

Nonclassic CAH is a milder form of CAH. Symptoms, when they occur, usually develop later in life rather than at birth. There’s a wide spectrum of symptoms and severity within nonclassic CAH.

People with nonclassic CAH generally make enough cortisol for daily needs but produce too much of certain androgens.

People with nonclassic CAH have not been found to have the same risk profile for metabolic problems as those with classic CAH. Because there is a wide spectrum of symptoms and severity within nonclassic CAH, there can be some individuals who begin treatment later in life and may be able to stop glucocorticoid therapy. Others may start glucocorticoid therapy in childhood when they come to medical attention and may stay on medications, especially women.

People with nonclassic CAH may also have high androgen levels and insulin resistance, especially if untreated.

Research regarding weight gain in nonclassic CAH is limited. Nonclassic CAH shares some features with another hormone-related condition, polyendocrine metabolic ovarian syndrome (PMOS, formerly known as PCOS). Like nonclassic CAH, PMOS involves excess androgen production.

In PMOS, high androgen levels can lead to insulin resistance, which may promote weight gain and further increase androgen production.

Similar mechanisms may play a role in some people with nonclassic CAH. A 2019 review reported that one-third of untreated women with nonclassic CAH had insulin resistance.

If weight changes are a concern, talk with your healthcare provider about what a healthy weight range may look like for you or your child.

What Can Help With Weight Gain in CAH?

Although weight gain may be a side effect of CAH treatment, it’s important to continue taking your medication as prescribed. You should never start or stop treatment without talking to your healthcare provider first.

If weight management is part of your treatment goals, several strategies may help.

Eat a Healthy Diet

Following a balanced diet can support weight management and overall health.

Healthy eating guidance from the Dietary Guidelines for Americans and the National Institute of Diabetes and Digestive and Kidney Diseases includes:

• Incorporating a wide variety of fruits and vegetables
• Eating whole grains instead of simple carbohydrates
• Eating high-protein foods such as salmon, chicken, and lentils
• Limiting foods and beverages high in added sugars
• Paying attention to portion sizes
• Reducing snacking throughout the day

As always, talk with your doctor before making any major changes to your diet. You may want to consider consulting a registered dietitian for more advice tailored to your or your child’s needs.

Stay Physically Active

Regular physical activity is another key component of maintaining a healthy weight.

Children and adolescents ages 6 to 17 should get at least 60 minutes of moderate-to-vigorous physical activity every day. Adults should aim for 150 to 300 minutes of moderate-intensity aerobic activity each week, with muscle-strengthening activities on at least two days per week.

It’s also important to incorporate different kinds of exercise, including:

• Aerobic exercise, like running and dancing
• Muscle-strengthening movement, like doing push-ups or lifting weights
• Bone-strengthening workouts, like jumping, running, walking, or dancing

For parents, it’s especially important to participate in your child’s activities. Setting a good example can help your child enjoy exercise and stay active as they grow up.

Get Enough Sleep

An often-overlooked part of weight management involves getting a good night’s sleep. Sleep is crucial for fighting off infections, letting the body repair itself, and maintaining a healthy weight.

Your sleep needs change as you grow older, and the U.S. Centers for Disease Control and Prevention (CDC) recommends the following amounts of sleep each night for each age bracket:

• Ages 4 to 12 months — 12 to 16 hours, including naps
• Ages 1 to 2 years — 11 to 14 hours
• Ages 3 to 5 years — 10 to 13 hours
• Ages 6 to 12 years — Nine to 12 hours
• Ages 13 to 17 years — Eight to 10 hours
• Ages 18 to 60 years — Seven or more hours
• Ages 61 to 64 years — Seven to nine hours
• Ages 65 and older — Seven to eight hours

Good sleep habits, including limiting screen use before bedtime, can help support healthy sleep.

Ask Your Doctor About Adjusting Glucocorticoid Doses

Some people with CAH need higher doses of glucocorticoids to control hormone levels. Higher doses can increase the likelihood of weight gain and other side effects.

If you’re concerned about weight changes, ask your doctor whether your current dose, medication type, or dosing schedule is still the best fit for your needs. Remember, never change your medication dose without medical supervision.

“I gained 5 pounds abruptly, but I’ve managed to stop the weight gain,” shared one CAHteam member. “I’m having my hydrocortisone adjusted periodically, whether it’s up or down. But right now, it’s a higher dose.”

Talk to Your Doctor About New CAH Treatment Options

In December 2024, the U.S. Food and Drug Administration (FDA) approved crinecerfont (Crenessity) as an add-on treatment with glucocorticoids for adults and children ages 4 and older with classic CAH.

In clinical studies, the medication improved androgen control and helped many participants reduce their glucocorticoid dose while maintaining hormone control. A one-year follow-up analysis in children and adolescents who received crinecerfont found reductions in body mass index (BMI) standard deviation scores.

The FDA also cautioned that people taking crinecerfont still need enough glucocorticoid replacement during times when the body needs more cortisol — such as during illness, surgery, or other stresses — to avoid the risk of acute adrenal insufficiency. This potentially life-threatening condition is also known as adrenal crisis.

Keep in mind that crinecerfont is approved only for classic CAH, not nonclassic CAH. Crinecerfont doesn’t replace glucocorticoids, so people taking it still need glucocorticoid replacement.

Talk with your endocrinologist about the treatment plan that best fits your health and goals, including other CAH treatment options and ways to manage weight.

Managing Weight With CAH

Weight gain can happen for several reasons in CAH, including hormone imbalances, insulin resistance, and the glucocorticoid medications used to treat the condition.

While weight changes can be frustrating, there are steps that may help, including reviewing medication plans with your healthcare team, staying physically active, eating a balanced diet, and getting enough sleep.

If you’re concerned about weight gain, talk with your endocrinologist or healthcare provider about options that support both your CAH management and your long-term health.