Why CAH Can Make Weight Loss Harder — and What You Can Do

You know that sticking to your medication regimen is critical when you’re living with congenital adrenal hyperplasia (CAH). It’s what’s standing between you and adrenal crisis, along with other potentially life-threatening effects.

But no doubt, the side effects of your treatment plan can be a real challenge. Weight gain and having a tougher time losing weight can be among them.

We talked with endocrinologist Pratibha Rao, MD, about how CAH can affect your weight.

Does CAH cause weight gain?

CAH itself doesn’t necessarily affect your weight. But the medications you take to manage the condition can cause weight gain and make weight loss much more difficult.

“There’s a tradeoff that we have to monitor,” Dr. Rao explains. “To keep your hormones at a safe and healthy level, we have to recognize the effects that treatments have on your health, like weight gain and an increased risk of osteoporosis. The goal is to find the right balance that can keep CAH well managed while minimizing those effects.”

CAH medications and weight gain

Glucocorticoids and mineralocorticoids are some of the most common medications used to manage CAH. They’re known to affect weight because they can increase your appetite. They can also make you retain water — meaning they can increase your weight by causing your body to hang on to more water than it needs.

That includes medications like:

• Hydrocortisone
• Prednisone
• Dexamethasone

“To suppress adrenal androgens and replace missing cortisol, we usually have to give these medications at very high dosages,” Dr. Rao points out. “And that can lead to side effects like weight gain.”

Losing weight with CAH

Standard weight loss advice, like eating a well-balanced diet and exercising, still applies when you’re living with CAH. Even if the bathroom scale doesn’t reflect your efforts, living a healthy lifestyle can help keep you feeling your best.

• Exercise helps keep your heart healthy. This is especially important for people with CAH, as the condition can increase blood pressure, increase risk for atherosclerosis (a hardening of your arteries) and more. Exercise helps keep your bones strong, lowering your risk for osteoporosis. Aim for 150 minutes of moderate-intensity cardio exercise a week and two days of strength training.
• A balanced diet helps make sure your body is getting all the vital nutrients it needs to work its best. What’s more, choosing nutrient-dense foods can help to satisfy your appetite and keep you from overindulging in less-nutritious choices. (Pro tip: Drink lots of water, too!)
• Stress relief and good sleep allow your body and mind to take a much-needed pause. They’re healthy habits for anyone, but living with CAH can be particularly stressful, which can be dangerous when your body can’t make enough of the hormone cortisol to help you manage it. Try yoga, breathing exercises or meditation. And talking with a therapist who understands your condition can make a difference, too.

But perhaps the first step to managing your weight is talking with your CAH care team.

“If weight management is becoming a problem, we can sometimes consider different medications or dosages,” Dr. Rao notes.

Some people benefit from switching from a long-acting glucocorticoid to a shorter-acting one. For others, a medication known as a CRF1 receptor antagonist could help.

Unlike steroids, CRF1 receptor antagonists don’t replace hormones. Instead, they help stop the overproduction of adrenal androgens. They do that by reducing the secretion of ACTH from the anterior pituitary gland.

It won’t replace your steroid medications. But it may mean you can take less of them — and that can help you manage your weight more effectively.

If you’re doing everything “right” — eating well, staying active, following your treatment plan — and still struggling with your weight, you’re not alone. CAH, and the medications used to manage it, can make weight loss harder than it should be.

But that doesn’t mean it’s impossible. Don’t give up — you deserve support that sees the whole picture and helps you feel your best. Talk with your healthcare team about your options.