Living with Cushing syndrome due to macronodular adrenal hyperplasia
A condition with many lumps in both adrenal glands that make too much cortisol, usually noticed in the forties or fifties.
Understanding Cushing syndrome due to macronodular adrenal hyperplasia
The adrenal glands sit on top of the kidneys. The nodules, usually in both glands, cause the glands to enlarge and make more cortisol than normal. High cortisol leads to weight gain in the face and upper body, fragile skin, bone loss, and fatigue. It typically shows up in a person's forties or fifties. Some people have no symptoms (subclinical Cushing syndrome).
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Weight gain in the belly, face (moon face), and upper back
- Easy bruising
- High blood pressure
- Thin bones (osteoporosis)
- Trouble handling sugar (glucose intolerance)
- Mood changes, including depression
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 genetic specialists, hormone specialists and urinary and male reproductive system specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Resolve: The National Infertility Association may keep lists of experts for this condition.
Care & treatment
- Care team
- Genetic specialists (geneticists); Hormone specialists (endocrinologists); Urinary and male reproductive system specialists (urologists)
- Expert care
- Expert lists: 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 Resolve: The National Infertility Association
- 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
GARD says changes in genes cause this condition. It is autosomal dominant, meaning one changed copy of the gene can be enough to cause it. GARD doesn't name a gene.
Also known as: acth-independent macronodular adrenal hyperplasia; hypercortisolism due to macronodular adrenal hyperplasia; primary bilateral macronodular adrenal hyperplasia
Patient organizations
- Resolve: The National Infertility AssociationInfertility · United States
Broader rare-disease groups
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Cushing syndrome due to macronodular adrenal hyperplasia.
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