Living with Pituitary dependent hypercortisolism
A hormone condition, also called Cushing disease, where a pituitary tumor causes the body to make too much cortisol.
Understanding Pituitary dependent hypercortisolism
A noncancerous pituitary tumor (adenoma) or pituitary overgrowth causes the adrenal glands to make large amounts of cortisol. Signs can include weight gain around the trunk and face, stretch marks, easy bruising, a hump on the upper back, muscle weakness and tiredness. Thin bones, mood and memory problems, infections, high blood pressure and diabetes can also occur. Women may have irregular periods and extra body hair.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Weight gain around the belly and face
- Easy bruising
- Fatty hump on the upper back (buffalo hump)
- Muscle weakness in the arms and legs
- Mood swings and behavior changes
- Excess body hair (hirsutism) and missed periods
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include cancer specialists, genetic specialists and hormone specialists.
- 3Consider genetic testing
Changes in USP8 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 4Connect with expert centers
Raymond A. Wood Foundation, Cushing's Support and Research Foundation and Resolve: The National Infertility Association may keep lists of experts for this condition.
Care & treatment
- Care team
- Cancer specialists (oncologists); Genetic specialists (geneticists); Hormone specialists (endocrinologists)
- Expert care
- Expert lists: Raymond A. Wood Foundation, Cushing's Support and Research Foundation, Resolve: The National Infertility Association
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Raymond A. Wood Foundation and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
Most cases happen by chance. Some are linked to changes in the AIP and GNAS genes that occur in the tumor itself. Rarely it is inherited, alone or as part of a syndrome such as MEN1.
Also known as: acth producing pituitary adenoma; corticotroph pituitary adenoma; cushing basophilism; cushing disease; cushing disease due to pituitary adenoma; cushing disease, pituitary
Patient organizations
- Raymond A. Wood FoundationPituitary dependent hypercortisolism · United States
- Cushing's Support and Research FoundationPituitary dependent hypercortisolism · United States
- Resolve: The National Infertility AssociationInfertility · United States
- Pituitary Network AssociationPituitary deficiencies · United States
You are more than your diagnosis
Perspectives from people navigating life with Pituitary dependent hypercortisolism.
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