Overview
ACTH-independent Cushing syndrome due to a rare cortisol-producing adrenal tumor is a condition where one or both adrenal glands (small glands that sit on top of your kidneys) develop a tumor that makes too much of a hormone called cortisol. Normally, the brain controls how much cortisol the body makes. In this condition, the tumor acts on its own — independent of the brain's signal hormone called ACTH — which is why it is called 'ACTH-independent.' This is different from the more common forms of Cushing syndrome, which are driven by signals from the brain or pituitary gland. Too much cortisol causes a wide range of problems throughout the body. It can lead to weight gain (especially around the belly and face), high blood pressure, weak bones, muscle weakness, mood changes, and problems with blood sugar. Over time, these effects can seriously impact a person's quality of life and overall health. Treatment usually involves surgery to remove the tumor or the affected adrenal gland. In many cases, surgery can be curative. When surgery is not possible, medications that block cortisol production may be used. Because this is a rare and complex condition, care from a specialist team is very important for the best outcomes.
Key symptoms:
Weight gain, especially around the belly, face (round 'moon face'), and upper back ('buffalo hump')High blood pressureMuscle weakness, especially in the thighs and upper armsEasy bruising and thin, fragile skinPurple or pink stretch marks on the belly, thighs, or armsWeak bones (osteoporosis) that can lead to fracturesHigh blood sugar or diabetesMood changes including depression, anxiety, or irritabilityFatigue and low energyIrregular or absent menstrual periods in womenReduced sex driveIncreased body or facial hair in womenSlow healing of cuts and infections
Sporadic
Usually appears on its own, not inherited from a parent
Adult
Begins in adulthood (age 18 or older)
Treatments
No FDA-approved treatments are currently listed for OBSOLETE: ACTH-independent Cushing syndrome due to rare cortisol-producing adrenal tumor.
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Specialists
View all specialists →No specialists are currently listed for OBSOLETE: ACTH-independent Cushing syndrome due to rare cortisol-producing adrenal tumor.
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to OBSOLETE: ACTH-independent Cushing syndrome due to rare cortisol-producing adrenal tumor.
Community
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Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.Is my tumor benign or could it be cancerous, and how does that affect my treatment plan?,Am I a candidate for surgery, and what type of surgery would you recommend?,How long will I need to take steroid replacement medication after surgery, and what are the signs of adrenal crisis I should watch for?,Should I be tested for a hereditary syndrome that might have caused this tumor?,What follow-up tests and imaging will I need after treatment to check for recurrence?,Are there clinical trials or newer treatments I should know about?,What support resources are available to help me manage the emotional and physical effects of this condition?
Common questions about OBSOLETE: ACTH-independent Cushing syndrome due to rare cortisol-producing adrenal tumor
What is OBSOLETE: ACTH-independent Cushing syndrome due to rare cortisol-producing adrenal tumor?
ACTH-independent Cushing syndrome due to a rare cortisol-producing adrenal tumor is a condition where one or both adrenal glands (small glands that sit on top of your kidneys) develop a tumor that makes too much of a hormone called cortisol. Normally, the brain controls how much cortisol the body makes. In this condition, the tumor acts on its own — independent of the brain's signal hormone called ACTH — which is why it is called 'ACTH-independent.' This is different from the more common forms of Cushing syndrome, which are driven by signals from the brain or pituitary gland. Too much cortiso
How is OBSOLETE: ACTH-independent Cushing syndrome due to rare cortisol-producing adrenal tumor inherited?
OBSOLETE: ACTH-independent Cushing syndrome due to rare cortisol-producing adrenal tumor follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does OBSOLETE: ACTH-independent Cushing syndrome due to rare cortisol-producing adrenal tumor typically begin?
Typical onset of OBSOLETE: ACTH-independent Cushing syndrome due to rare cortisol-producing adrenal tumor is adult. Age of onset can vary across affected individuals.