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People with congenital adrenal hyperplasia (CAH) may develop other health conditions over time. These conditions can happen because of hormone imbalances in CAH or as side effects from CAH treatments.
Not everyone with CAH will have the same risks for other health conditions. Risk often depends on the type of CAH — for instance, classic salt-wasting, simple-virilizing, or nonclassic congenital adrenal hyperplasia. How severe your CAH is, how old you are, which treatments you use, and how well your CAH is controlled may also make you more or less likely to develop other conditions. Children, adolescents, and adults with CAH may face different challenges at different stages of life.
Read on to learn more about seven health conditions that can be related to CAH.
About 30 percent to 40 percent of people with classic or nonclassic CAH have obesity. “Obesity” is a medical term based on body mass index (BMI) score — a measure of height and weight that doesn’t always reflect a person’s health. In adults, obesity is defined as a BMI score of 30 or higher.
Several factors may make a child or adult with CAH more likely to have obesity:
Cushing’s syndrome happens when the body is exposed to too much cortisol over time. Cortisol is a stress hormone made by the adrenal glands that helps regulate blood sugar, stress responses, and metabolism (energy use).
People with classic CAH don’t make enough cortisol, so they take glucocorticoid medications to raise their levels. However, long-term use of glucocorticoids — especially at higher doses — can lead to exogenous (medication-induced) Cushing’s syndrome.
Symptoms may include:
Your healthcare provider will monitor you for signs and symptoms of Cushing’s syndrome. They’ll adjust your dose of glucocorticoid medications to avoid these symptoms.
In December 2024, the U.S. Food and Drug Administration (FDA) approved crinecerfont (Crenessity) for classic CAH. This treatment decreases excess androgen levels, which may help reduce glucocorticoid doses and, in turn, lower the risk of side effects such as increased fat mass.
High blood pressure means blood pushes too strongly on artery walls. Over time, this can damage blood vessels and raise the risk of cardiovascular disease or metabolic syndrome.
Compared to the general population, people with CAH — including children — may have a higher risk of high blood pressure. Studies show that many children with both classic and nonclassic CAH have blood pressure levels above normal.
Several factors can raise the risk of hypertension. Hormone imbalances in CAH can affect aldosterone and androgen levels, making it harder for the body to keep blood pressure steady.
CAH treatments may also play a role. Medicines like hydrocortisone, fludrocortisone (to replace aldosterone), and salt supplements may raise blood pressure, especially at higher doses.
Your healthcare provider will closely monitor your blood pressure and adjust your medications if needed.
Diabetes is a condition in which blood glucose (sugar) levels are too high. This can happen if the pancreas doesn’t make enough insulin or with insulin resistance. People who have CAH may develop diabetes due to hormone imbalances and medication side effects.
People with CAH may also develop problems related to diabetes, such as glucose intolerance or prediabetes. This means blood sugar levels are higher than normal, but not high enough to be called diabetes. Hormone changes, including high androgen levels in women, can make the body more resistant to insulin, according to the journal Frontiers in Endocrinology.
Long-term glucocorticoid therapy is another risk factor for diabetes. These medications may:
Your risk of diabetes is related to the type and dose of glucocorticoid. Studies have found that people taking dexamethasone are more likely to develop insulin resistance than those taking prednisone or hydrocortisone.
“Heart disease” refers to health conditions that affect your heart, the most common of which is coronary artery disease. Heart disease often doesn’t cause symptoms but can lead to a heart attack, heart failure, or heart arrhythmia (irregular heartbeat).
People with CAH may have a higher risk of heart disease due to related conditions such as high blood pressure, obesity, and diabetes. Additionally, high blood pressure in childhood is a risk factor for poor heart health later in life.
Other changes add to this risk. Some studies suggest that people with CAH have differences in lipid metabolism — the way the body processes fats in the blood. Other findings show increased arterial stiffness, in which blood vessels lose flexibility. Both of these factors raise the chance of developing long-term cardiovascular disease.
Osteoporosis causes weak bones and low bone density. People with osteoporosis are more likely to have a bone fracture (break). Osteoporosis is usually associated with older adults, but an imbalance in sex hormones, such as estrogen and androgens, can also lead to lower bone mass.
In some people with CAH, hormonal imbalances and CAH treatment can cause osteoporosis. Risk depends on age, sex, and medication dose.
Glucocorticoid treatment is the main risk factor for osteoporosis in CAH. Glucocorticoid medications can weaken bones by:
Ask your doctor whether you should take steps to reduce your risk of osteoporosis. They may recommend taking calcium, vitamin D, or other nutritional supplements to boost bone density.
“Infertility” is the medical term for being unable to get pregnant. Both males and females with CAH can have fertility problems due to hormone imbalances, according to the journal Experimental and Clinical Endocrinology & Diabetes.
Females with CAH typically have fewer pregnancies compared to the general population. Increased androgen hormones and the effects of genital surgery in individuals with CAH can make it harder to become pregnant.
People with more severe forms of CAH may have more trouble becoming pregnant. In some studies, less than 10 percent of women with the more severe form of classic CAH (salt-wasting CAH) become pregnant, according to Frontiers in Endocrinology. About 41 percent of those with the less severe form of classic CAH (simple-virilizing CAH) become pregnant.
Reproductive issues, including infertility, can be the first symptom that people with nonclassic CAH notice. Spontaneous miscarriage, irregular menstruation, and pregnancy complications also may occur.
However, many people with the nonclassic form of CAH can get pregnant without any treatment. Although getting pregnant may be more difficult for those with CAH, many have normal pregnancies.
A person with CAH who wishes to get pregnant can work with their endocrinologist and OB-GYN for proper treatment.
Males with CAH may have difficulty getting a partner pregnant, most commonly due to testicular adrenal rest tumors (TARTs). Although TARTs are benign (noncancerous), they can cause problems with fertility.
TARTs can form as a result of hormone imbalance in CAH. TARTs and infertility are more likely to occur with severe forms of CAH. About half of men with the more severe salt-wasting classic CAH develop TARTs, according to a study in Endocrine Reviews. The researchers note that about 22 percent of men with the less severe simple-virilizing classic CAH develop TARTs.
On CAHteam, people share their experiences with congenital adrenal hyperplasia, get advice, and find support from others who understand.
Have you or a family member living with CAH developed any of these related conditions? Let others know in the comments below.
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If I Have 21 Hydroxalyase No Classical Is That The Same As CAH?
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Doctor's don't take me seriously rven though i have a scan that shows my tumor
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