Living with Multiple endocrine neoplasia type 4
An extremely rare inherited condition with tumors in the parathyroid and pituitary glands, and sometimes other organs.
Understanding Multiple endocrine neoplasia type 4
The parathyroid glands sit near the thyroid in the neck, and the pituitary gland is at the base of the brain. Other tumors that may occur include tumors in the adrenal glands, the kidneys, and the reproductive organs (ovaries or testes). It usually shows up in adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Overactive parathyroid glands (hyperparathyroidism)
- Pituitary tumors
- Adrenal gland tumors
- Insulin-making pancreas tumors (insulinoma)
- Episodic belly pain
- Diarrhea
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 CDKN1B are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
Care & treatment
- Care team
- Cancer specialists (oncologists); Genetic specialists (geneticists); Hormone specialists (endocrinologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 Association for Multiple Endocrine Neoplasia Disorders
- 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
This condition is caused by changes in the CDKN1B gene. It is autosomal dominant, which means a changed copy of the gene from one parent can be enough to cause it.
Also known as: cdkn1b multiple endocrine neoplasia; men (multiple endocrine neoplasia) 4 syndrome; men4; multiple endocrine neoplasia caused by mutation in cdkn1b; multiple endocrine neoplasia, type iv
Patient organizations
- Association for Multiple Endocrine Neoplasia DisordersMultiple endocrine neoplasia type 4 · United States
You are more than your diagnosis
Perspectives from people navigating life with Multiple endocrine neoplasia type 4.
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