For people living with congenital adrenal hyperplasia (CAH), life comes with a cluster of physical and emotional challenges. Overall quality of life and body image can be a particular struggle, especially for women living with CAH, according to the Journal of Clinical Medicine. One of the challenges people with CAH face is weight gain.

Although weight gain itself isn’t necessarily a cause for medical concern, children, adolescents, and adults with CAH have all shown higher rates of obesity, which is linked to several health conditions. Keep reading to learn more about weight gain with CAH and ways to manage it.

Does Classic CAH Cause Weight Gain?

Classic congenital adrenal hyperplasia is a type of CAH caused by imbalances in the hormones cortisol, aldosterone, and androgens. Cortisol helps regulate blood pressure and blood sugar, aldosterone balances the salt and water in your body, and androgens help with body growth, energy, and sex hormone balance — especially in women and during puberty.

The adrenal glands (located on top of the kidneys) make these hormones. In people with CAH, these glands lack a specific enzyme they need to work properly. This missing ingredient means the adrenal glands can’t make enough cortisol and often aldosterone, and instead they overproduce androgens. These imbalances can lead to:

• Low cortisol — Affects the body’s ability to handle stress, illness, and injury and can cause fatigue, low blood sugar, and even life-threatening adrenal crisis
• Low aldosterone — Disrupts salt and water balance, leading to dehydration, low blood pressure, and salt loss (especially in the “salt-wasting” form of CAH)
• High androgens — Can cause early puberty, excess body hair, acne, irregular periods, infertility, and atypical genitalia in newborn girls

Glucocorticoid Medications for CAH Can Cause Weight Gain

CAH treatment involves taking cortisol replacement medicine every day. Cortisol replacement is necessary for hormone balance and overall health. But because CAH causes too much androgen production, doctors often need to give higher doses of cortisol-like medicine — called glucocorticoids — to help lower those levels.

Over time, high doses of glucocorticoids can lead to side effects like weight gain, slower growth in children, weaker bones, and changes in mood or energy. Due to these potential side effects, CAH treatment is a careful balancing act. You need enough glucocorticoids to control symptoms, but not so much that they cause harm.

How Do Classic CAH Treatments Cause Weight Gain?

Glucocorticoids are one of the medicines used to treat CAH. These synthetic forms of cortisol help replace the body’s low cortisol levels and decrease androgens. While glucocorticoids are needed to replace the missing hormones, they also come with side effects, especially when higher doses are given to control androgens. Glucocorticoids can increase appetite and cause the body to store more fat. Both of these effects might contribute to weight gain.

A 2017 study found that 70 percent of people who use corticosteroids (like glucocorticoids) long term develop weight gain. People with classic CAH need to take glucocorticoids daily to treat the condition and avoid severe, life-threatening symptoms.

Studies show that higher doses of glucocorticoids are linked to more weight gain and problems like insulin resistance. One study also explained that careful dosing in childhood is needed to prevent too much weight gain. This means that children and adults with salt-wasting CAH, who usually need higher doses, may be more likely to gain weight than those with simple-virilizing CAH.

Does Nonclassic CAH Cause Weight Gain?

Unlike classic CAH, people with nonclassic CAH — a milder form of CAH — have high androgens, but they still make enough cortisol and aldosterone. People with nonclassic CAH generally don’t have the same likelihood of weight gain with glucocorticoids — if they need treatment, it’s usually at much lower doses and not lifelong. Many people with nonclassic CAH don’t need glucocorticoid therapy at all.

Although people with nonclassic CAH are less likely to gain weight from glucocorticoids, weight gain can still occur due to other factors. These include high androgen levels and potential insulin resistance.

Research regarding weight gain in nonclassic CAH is limited. However, a lot can be learned from studies of a closely linked disease — polycystic ovarian syndrome (PCOS). These two conditions share many characteristics. Most importantly, both typically cause the body to make too much androgen.

PCOS can also affect how the body uses insulin and stores fat. Because PCOS and weight gain are closely linked, studying PCOS helps researchers understand similar issues in people with nonclassic CAH.

In PCOS, excess androgens can lead to insulin resistance, in which the body doesn’t respond well to insulin. Insulin resistance can lead to weight gain and increased androgen production in PCOS. Obesity can also worsen insulin resistance. The relationship between androgens, insulin resistance, and weight gain isn’t a straight line — it’s a vicious cycle.

All these factors affect each other and can lead to weight gain. While research on nonclassic CAH is more sparse, over one-third of people with untreated nonclassic CAH also have insulin resistance. The combination of excess androgens and insulin resistance may lead to obesity in nonclassic CAH.

What Are the Effects of Weight Gain in CAH?

Managing weight can help avoid risks linked to obesity, such as type 2 diabetes and heart disease. A 2018 study showed that children with CAH had a higher risk of being overweight compared to peers without CAH. Weight gained in childhood can have lasting effects. Children are more likely to retain the weight in adulthood, increasing their chances of developing associated health conditions.

Obesity also has emotional impacts, like low self-esteem, body image issues, and depression. Some people with CAH may need to incorporate weight management into their treatment strategy.

It’s important to note that everyone’s circumstances are different — for many people, weight gain doesn’t necessarily lead to medical or emotional challenges. It’s also possible to gain weight while remaining a healthy weight. Be sure to talk with your doctor about the weight range that’s right for you or your child.

How Can You Address Weight Gain With CAH?

Although weight gain can be a side effect of CAH treatment, it’s important to continue taking the medications. It’s normal for the body to change during treatment for many conditions, and all drugs have side effects. While some people find these side effects bothersome, it’s important to talk with your healthcare team about the overall benefits and risks of any treatment.

If your doctor recommends managing weight gain, you can consider several lifestyle changes. Here are some general recommendations for adjusting diet, physical activity, and sleep habits.

Eat a Healthy Diet

First and foremost, changing the way you eat can help with weight loss and improve overall health. The U.S. Department of Agriculture and the Department of Health and Human Services (HHS) publish Dietary Guidelines for Americans, with general recommendations for a healthy diet. Some key changes to consider include:

• Incorporating a wide variety of fruits and vegetables
• Eating whole grains instead of simple carbohydrates
• Choosing low-fat instead of whole-fat dairy products
• Eating high-protein foods such as salmon, chicken, and lentils

There are many ways to personalize these guidelines. Eating regular meals and reducing snacking can also help, as can sticking with appropriate portions. As always, make sure you talk with your doctor before making any major changes to your diet. Consider consulting a registered dietitian for more advice tailored to you or your child.

Incorporate Daily Exercise

Regular physical activity is another key component of maintaining a healthy weight. The HHS Physical Activity Guidelines for Americans recommends at least an hour of physical activity a day for children and young adults.

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. For adults, this is about eight to 10 hours. For kids, it could be more than 12 hours. Sleep is crucial for fighting off infections, letting the body repair itself, and maintaining a healthy weight.

It’s especially important for both kids and adults to limit screen time before bed. Blue light from screens can block melatonin production, making it harder to fall asleep. Consider setting a “no screen” time to help you and your child sleep through the night.

Ask Your Doctor About Adjusting Glucocorticoid Doses

If you have CAH, you may be taking higher doses of glucocorticoids than your body naturally needs to help manage hormone levels. Unfortunately, high doses over time can lead to weight gain, changes in mood, weaker bones, and other health issues.

That’s why it’s important to talk with your doctor about your current dose. In some cases, they may be able to adjust or lower your glucocorticoid dose safely, especially if your hormone levels are well controlled.

The type of glucocorticoid and when it’s taken also matter. Short-acting glucocorticoids may be safer for long-term use. Stronger, longer-acting glucocorticoids may stay in the body longer, increasing the risk of side effects.

Taking glucocorticoids at night may be more harmful. Your doctor may be able to adjust the timing or reduce nighttime doses to help lower side effects, while still keeping your hormone levels in balance.

Never change your medication on your own. Always work with your healthcare team to find the right balance for your body.

Talk to Your Doctor About New CAH Treatment Options

In December 2024, the U.S. Food and Drug Administration (FDA) approved a treatment called crinecerfont (Crenessity) for classic CAH. This new medication is designed to lower excess androgen levels, which may allow doctors to reduce the amount of glucocorticoids needed to manage CAH. Lowering glucocorticoid doses to your body’s more natural levels may help reduce side effects like weight gain.

Two clinical trials — one in adults and one in children — found that crinecerfont helped reduce androgen levels and allowed people with CAH to lower their daily steroid doses while still keeping androgen levels under control. These studies showed that crinecerfont is both safe and effective.

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

Crinecerfont is approved only for people with classic CAH. It’s not designed or tested for nonclassic CAH. If you’re unsure which type you have, talk to your healthcare provider before considering this medication.

It’s important to know that crinecerfont doesn’t replace glucocorticoids. People with CAH still need steroid medication to replace the cortisol their bodies can’t make.

Ultimately, people with classic CAH need glucocorticoids to treat their condition and live a healthy life. Weight gain may be a side effect of this lifesaving medicine, but it’s important to keep taking glucocorticoids and not stop on your own. You should also talk with your endocrinologist or healthcare provider about the treatment plan that best fits your health and goals, including other CAH treatment options and ways to manage weight.

Talk With Others Who Understand

On CAHteam, people share their experiences with congenital adrenal hyperplasia, get advice, and find support from others who understand.

Have you experienced weight gain with CAH? What strategies have you found helpful in maintaining a healthy lifestyle? Let others know in the comments below.