Adrenocorticotropic Hormone Deficiency
What is Adrenocorticotropic Hormone Deficiency?
Adrenocorticotropic hormone deficiency happens when your pituitary gland does not make enough ACTH. The pituitary gland is a small organ at the base of your brain that controls many hormones. ACTH tells your adrenal glands to produce cortisol, a hormone your body needs to handle stress and maintain blood pressure.
When ACTH levels are too low, your adrenal glands cannot make enough cortisol. This leads to a condition called secondary adrenal insufficiency. Without enough cortisol, your body struggles to regulate blood sugar, blood pressure, and inflammation. This can affect your energy levels, immune function, and overall health.
ACTH deficiency is different from primary adrenal insufficiency, where the adrenal glands themselves are damaged. In ACTH deficiency, the adrenal glands are healthy but lack the signal from the pituitary to produce cortisol. Early detection through blood testing helps you manage symptoms and prevent serious complications.
Symptoms
- Persistent fatigue and low energy that does not improve with rest
- Low blood pressure that causes dizziness or fainting
- Muscle weakness and loss of muscle mass
- Weight loss and decreased appetite
- Nausea, vomiting, or abdominal pain
- Low blood sugar, especially during fasting or stress
- Depression, confusion, or difficulty concentrating
- Pale skin without the darkening seen in primary adrenal insufficiency
- Decreased tolerance to physical or emotional stress
- Loss of body hair in women
Some people have mild symptoms that develop slowly over months or years. Others may not notice symptoms until they face physical stress like illness or surgery. Early symptoms can be mistaken for depression or chronic fatigue syndrome.
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Causes and risk factors
ACTH deficiency usually happens when the pituitary gland is damaged or stops working properly. Tumors in or near the pituitary gland are the most common cause. Brain surgery or radiation therapy to treat tumors can also damage the pituitary. Head injuries, infections like meningitis, and autoimmune diseases that attack the pituitary can lead to ACTH deficiency. Some people develop the condition after suddenly stopping long-term steroid medications, which suppresses natural ACTH production.
Other risk factors include pituitary apoplexy, a sudden bleeding into the pituitary gland. Sheehan syndrome, which happens after severe blood loss during childbirth, can damage the pituitary. Genetic conditions affecting pituitary development are rare but can cause ACTH deficiency from birth. Inflammatory diseases like sarcoidosis and hemochromatosis may also affect pituitary function. In some cases, doctors cannot identify a specific cause.
How it's diagnosed
Doctors diagnose ACTH deficiency through blood tests that measure ACTH and cortisol levels. Your doctor will typically check your morning cortisol level first, since cortisol is naturally highest in the morning. If your cortisol is low, an ACTH test helps determine if your pituitary gland is producing enough hormone. Low ACTH with low cortisol confirms ACTH deficiency rather than a problem with your adrenal glands.
Additional testing may include an ACTH stimulation test, where synthetic ACTH is given to see if your adrenal glands can respond. Insulin tolerance testing can assess how well your pituitary responds to stress. Imaging tests like MRI scans help identify tumors or damage to the pituitary gland. Rite Aid offers ACTH and plasma testing as an add-on to help detect and monitor this condition. Regular monitoring helps ensure your treatment is working properly.
Treatment options
- Hormone replacement therapy with hydrocortisone or prednisone to replace missing cortisol
- Taking higher doses of medication during illness, injury, or surgery to prevent adrenal crisis
- Eating regular meals with adequate salt to maintain blood pressure and blood sugar
- Wearing a medical alert bracelet to inform healthcare providers of your condition
- Working with an endocrinologist to adjust medication doses based on your needs
- Treating the underlying cause, such as removing a pituitary tumor if present
- Monitoring blood tests regularly to ensure hormone levels stay in a healthy range
- Learning to recognize signs of adrenal crisis and when to seek emergency care
- Managing stress through rest, relaxation techniques, and adequate sleep
- Avoiding sudden discontinuation of steroid medications without medical guidance
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Frequently asked questions
ACTH deficiency is secondary adrenal insufficiency caused by low ACTH from the pituitary gland. Addison's disease is primary adrenal insufficiency where the adrenal glands themselves are damaged. In ACTH deficiency, the adrenal glands are healthy but lack the signal to make cortisol. People with ACTH deficiency typically do not have the skin darkening seen in Addison's disease.
Yes, ACTH deficiency can lead to adrenal crisis, a medical emergency that happens when cortisol levels drop too low. Symptoms include severe weakness, confusion, very low blood pressure, and loss of consciousness. Adrenal crisis can be triggered by illness, surgery, or injury. Without immediate treatment with intravenous steroids and fluids, adrenal crisis can be fatal.
After diagnosis, your doctor will test your ACTH and cortisol levels every few months to adjust your medication. Once your levels are stable, testing every 6 to 12 months is typical. You may need more frequent testing if you change medications, experience new symptoms, or face health challenges. Regular monitoring helps prevent both undertreatment and overtreatment.
Infections like flu or pneumonia are common triggers because illness increases your body's need for cortisol. Surgery, injuries, severe dehydration, and emotional stress can also trigger a crisis. Skipping doses of your cortisol replacement medication increases risk. Always tell your doctor about ACTH deficiency before any medical procedure so they can adjust your medication.
Most people with ACTH deficiency need lifelong hormone replacement therapy. However, if your condition is caused by a treatable problem like a pituitary tumor, removing the tumor may restore normal function. If ACTH deficiency resulted from stopping steroid medication, your pituitary may recover over several months. Your doctor will monitor your hormone levels to see if natural production returns.
While diet and lifestyle cannot replace hormone therapy, they support your overall health. Eating regular meals helps maintain stable blood sugar levels. Getting enough salt helps prevent low blood pressure. Managing stress through adequate sleep and relaxation reduces strain on your body. Staying hydrated and avoiding alcohol also helps your body function better with hormone replacement.
Take the missed dose as soon as you remember, unless it is almost time for your next dose. Do not double up doses. If you miss multiple doses or feel unwell, contact your doctor right away. Keep extra medication with you at all times and never run out of your prescription.
Women with ACTH deficiency can have healthy pregnancies with careful monitoring and medication adjustments. Pregnancy increases cortisol needs, especially during labor and delivery. Your endocrinologist and obstetrician will work together to adjust your medication throughout pregnancy. Higher doses are typically needed during delivery to prevent adrenal crisis.
Most cases of ACTH deficiency are acquired, not inherited. They result from tumors, surgery, radiation, or injury to the pituitary gland. Rare genetic conditions can cause congenital ACTH deficiency present from birth. If you have a genetic form, genetic counseling can help you understand risks for future children.
Many people notice improvement in energy and symptoms within a few days to weeks of starting cortisol replacement. Finding the right dose can take several months of adjustments based on your symptoms and blood tests. Some symptoms like muscle weakness may take longer to improve. Consistent medication and regular follow-up help you reach your best health.