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. While weight gain itself is not 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. Learn more about the connection between weight gain and CAH and explore your options for how to handle it.

Does Classic Congenital Adrenal Hyperplasia Cause Weight Gain?

Classic congenital adrenal hyperplasia is a type of CAH that occurs when there are imbalances in the hormones cortisol, aldosterone, and androgen. Cortisol helps regulate blood pressure and blood sugar, aldosterone balances the salt and water in your body, and androgens affect how your body develops and grows. The adrenal glands (glands located on top of the kidneys) make these hormones. In people with CAH, the adrenal glands don’t have enough of a specific enzyme, and this leads to a lack of cortisol and aldosterone, and high androgen levels.

These imbalances cause severe adrenal symptoms like arrhythmia (irregular heartbeat). Left untreated, arrhythmia can cause sudden cardiac arrest and death. Taking your medications daily is necessary for hormone balance and overall health. These lifesaving medications may also cause weight gain.

How Do Classic CAH Treatments Cause Weight Gain?

Glucocorticoids are one of the drugs used to treat CAH. They are synthetic forms of cortisol that help to replace the body’s low cortisol levels and decrease the androgens. While glucocorticoids are needed to replace your missing hormones, they also come with side effects. Since they act like hormones in the body, they mimic the function of those hormones. As a result, these steroids can cause increased appetite. They can also cause your body to store more fat than it otherwise would. Both of these effects might contribute to weight gain.

Seventy 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.

Additionally, the larger the dose you take, the higher the chance you will gain weight. This means that people with more severe salt-wasting CAH are more likely to gain weight. Those with moderate simple-virilizing (or non-salt wasting) CAH have a lower chance of gaining weight.

Does Nonclassic Congenital Adrenal Hyperplasia Cause Weight Gain?

Unlike classic CAH, people with nonclassic CAH — another form of CAH — do not generally have the same likelihood of weight gain with glucocorticoids. This is because if they need treatment, they may receive much lower doses and often don’t need it for life. In fact, people with nonclassic CAH frequently do not need any glucocorticoid therapy. However, people with nonclassic CAH may experience weight gain for other reasons. Weight gain may be due to excess androgens, or due to larger muscles in women with nonclassic CAH.

The research is limited regarding weight gain in nonclassic CAH. However, a lot can be learned from studies of a closely linked disease: polycystic ovarian syndrome (PCOS). These two diseases share many characteristics. Most importantly, both typically cause the body to produce excessive androgen. PCOS also shares a close association with obesity. Since the relationship between PCOS and weight gain has been better studied, it can also tell us a lot about what could be going on in nonclassic CAH.

In PCOS, androgen excess can lead to insulin resistance. This is a condition where your body no longer responds appropriately 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 is, therefore, not a straight line, it’s a 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 you or your child avoid risks associated with obesity, like developing type 2 diabetes and heart disease. Addressing weight gain is especially important in children with CAH. A 2018 study showed that children with CAH were at a higher risk of being overweight compared to peers without the condition. Weight gained in childhood also has trickle-down effects into adulthood. Children with weight gain have a higher likelihood of retaining that weight in adulthood, which increases their likelihood of developing associated health conditions.

Obesity in childhood also has emotional impacts, like low self-esteem, body image issues, and depression. For some kids with CAH, weight management may need to be incorporated as part of their treatment strategy.

It is important to note that every individual’s circumstances are different, and for many people, weight gain does not necessarily lead to medical or emotional challenges. It is also possible to gain weight while remaining a healthy weight. Be sure to talk to your doctor about what is right for you or your child specifically.

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 your medications. It’s normal for the body to change during treatment for many conditions, and all medications have side effects. While some find these side effects bothersome, it’s important to consider the overall benefits and risks of any treatment with your healthcare team.

If your doctor recommends that you manage weight gain for yourself or your child with CAH, there are plenty of lifestyle changes you can consider. Here are some general recommendations for changes to diet, physical activity, and sleep.

Eat a Healthy Diet

First and foremost, changing the way you eat can help with weight loss and improve your overall health. The U.S. Department of Agriculture and the Department of Health and Human Services (HHS) published Dietary Guidelines for Americans in 2020. These guidelines outline general recommendations for a healthy diet. Some key changes to consider may include:

• Incorporating a wide variety of fruits and vegetables
• Eating whole grains instead of simple carbohydrates
• Substituting whole fat with low-fat dairy products
• Eating foods that are high in protein, like salmon, chicken, and lentils

There are also many ways to personalize these guidelines for your particular needs. Eating regular meals and reducing snacking can also help, as can eating appropriate portion sizes. As always, make sure you talk to your doctor before making any major changes to your diet. Consider consulting a registered dietitian for more personalized advice.

Incorporate Daily Exercise

Regular physical activity is another key component to maintaining a healthy weight. The HHS Physical Activity Guidelines for Americans provides recommendations for exercise. For children and young adults, it recommends at least an hour of physical activity a day. It’s also important for everyone to incorporate different kinds of exercises. These include:

• Aerobic exercise, like running and dancing
• Muscle-strengthening exercises, like rock climbing
• Bone-strengthening workouts, like basketball and jumping jacks

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 is 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 important for fighting off infections, letting your 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.

Talk to Your Doctor About New CAH Treatment Options

In December 2024, the U.S. Food and Drug Administration (FDA) announced that it approved a new drug for classic CAH. This drug, called crinecerfont (Crenessity), is meant to reduce the amount of steroids that you need to take to manage CAH, which might help reduce the chances of weight gain. Two clinical trials testing crinecerfont in adults and children have shown that it works. These studies help determine if a treatment is safe and effective. However, the FDA did issue a caution that missing doses of crinecerfont could lead to acute adrenal insufficiency or crisis.

Ultimately, people with classic CAH need corticosteroids to treat their condition and live a healthy life. Weight gain may be a side effect of this lifesaving medication, but it’s important to continue the treatment plan your endocrinologist or healthcare provider has set for you. You can discuss additional CAH treatment options and weight management options with your healthcare provider to figure out what works for you.

Talk With Others Who Understand

CAHteam is the social network for people with congenital adrenal hyperplasia and their loved ones. On CAHteam, people come together to better understand life with the condition.

Have you experienced weight gain with CAH? What strategies have you found helpful in maintaining a healthy lifestyle? Share your experience in the comments below.