If you or your child is living with congenital adrenal hyperplasia (CAH), your healthcare provider may have talked to you about bone health. Some people with CAH develop low bone mineral density (BMD), also called osteopenia. Low BMD can lead to osteoporosis and raise the risk of fractures.

Researchers are still studying whether and when BMD may be lower in people with CAH. Your CAH specialist can help you better understand your risk for osteoporosis.

In the meantime, here’s what studies have found about the connection between CAH and osteoporosis, along with steps you can take to keep your bones healthy over time.

How Much Does CAH Increase the Risk for Osteoporosis?

It’s unknown exactly how much higher the risk of osteopenia is for people with CAH. In a study of 80 adults with CAH, 52 percent had reduced BMD. This was more common in those with classic CAH than in those with nonclassic CAH.

Most studies on CAH and bone mineral density have shown that people with CAH have a greater risk for low bone density compared to the general population.

In another study of 598 adults, people with CAH had lower BMD. In a recent study of boys and young adults, those with classic CAH had lower BMD, according to The Journal of Clinical Endocrinology & Metabolism. However, other studies have shown no difference in BMD between people with and without CAH. A few even show higher BMD in those with CAH. Some studies focus specifically on the risk of bone loss in women with simple virilizing CAH. This type of CAH makes the body produce too much androgen but does not cause serious salt loss.

More research is needed to better understand the relationship between different types of CAH, CAH treatments, and osteoporosis.

Connections Between CAH and Osteoporosis

Several factors related to CAH may affect bone health. These include long-term steroid treatment, hormone levels, and other health factors that may increase the risk of low BMD and osteoporosis.

Glucocorticoid Treatment

Many people who live with CAH take glucocorticoids (such as hydrocortisone, prednisone, dexamethasone, and methylprednisolone) to help treat the condition. Glucocorticoid treatment often starts in early childhood, depending on the type and how serious the CAH is. This can mean people have been taking glucocorticoids for many years by the time they’re adults.

Glucocorticoids are connected to lower BMD. They can reduce calcium absorption and slow new bone formation, which may weaken bones over time. Some studies suggest that people with CAH who take high doses of glucocorticoids are more likely to experience fractures.

Slower Growth Rates

Overtreating with glucocorticoids can slow down growth early in life. If people grow more slowly early in life and during puberty, their bones may not have the same bone mass as those of someone who grew faster and got taller. This could lead to lifelong low BMD and to osteoporosis later in life.

Cushing’s Syndrome

Cushing’s syndrome can develop when the body has too much cortisol, a hormone that helps control stress, over a long period of time. Cushing’s syndrome is linked to bone loss. Taking too many glucocorticoid medications over a long time can lead to Cushing’s syndrome. If Cushing’s syndrome develops, the risk of osteoporosis may increase.

Vitamin D Deficiency

Vitamin D helps the body absorb calcium, which it needs to grow strong bone tissue. Without enough vitamin D, people may absorb only 10 percent to 15 percent of the calcium they consume. You need calcium for strong, healthy bones. Children and teens with CAH may be more likely to have a vitamin D deficiency, particularly during puberty and in females, according to the Turkish Journal of Medical Sciences. Without enough vitamin D, bones may not become as strong as they should.

If you’re concerned about bone mineral density, talk to your CAH specialist. They can recommend tests to check your bone health and steps to take to protect it.

However, not all studies on vitamin D in people with CAH agree. In one study, although people with CAH were likely to be deficient in vitamin D, there was no connection to lower BMD.

Keeping Your Bones Healthy With CAH

There are several steps you can take to promote bone strength and lower your risk of developing osteoporosis.

Ask About Treatments

If you’re concerned about glucocorticoid treatments and bone health, talk to your doctor. They can help you weigh the risks of osteoporosis and fractures against the benefits of keeping CAH well controlled. There are newer medications that can reduce the glucocorticoid dose needed to manage CAH. Never change your medication dosage without consulting your endocrinologist first.

You can also ask whether a BMD test is right for you. This scan measures how strong your bones are and can help your doctor spot early bone loss before a fracture happens.

Discuss Growth Rates

If you’re worried about your child’s growth rate with CAH, talk to their endocrinologist about that, too. Your child’s doctor can schedule regular testing if there are any concerns.

Monitor Vitamin D

It’s easy to check vitamin D levels with a simple blood test. You can request this test from your doctor, then discuss the results. If levels are low, they may recommend taking a vitamin D supplement or simply increasing the vitamin D intake in your diet. If you decide to take a supplement, talk to your doctor about the best type and dose so you don’t take too much.

Stick to a Healthy Diet

What you eat can affect bone growth and health. You’ll want to eat plenty of protein and calcium-rich foods. Other healthy lifestyle choices can help, too. If you smoke, you should work with your doctor to come up with a plan to quit. If you drink alcohol, keep it to one drink a day for women and a maximum of two for men, as recommended by the American Academy of Orthopaedic Surgeons.

Exercise Regularly

Stay active with weight-bearing and strength-building exercises. These activities work against gravity, which can help your body build and maintain bone in weaker areas. Weight-bearing exercise can help your body build and maintain bone, especially in areas that have become weaker.

Before starting a new exercise routine, talk to your doctor, especially if you have low BMD or osteoporosis. Many activities can still be safe, such as walking, hiking, dancing, lifting weights, taking an exercise class, doing yoga, practicing tai chi, and even running.

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