Living with Multiple endocrine neoplasia, type 1
An inherited condition that causes tumors in glands such as the parathyroid, pituitary, and pancreas.
Understanding Multiple endocrine neoplasia, type 1
The tumors often affect the parathyroid, pituitary, and pancreas, and many make extra hormones that cause a variety of health problems. The most common symptoms come from an overactive parathyroid gland and may include kidney stones, thinning bones, nausea and vomiting, high blood pressure, weakness, and fatigue. It is diagnosed when a person has two or more endocrine tumors, and genetic testing can help confirm it. It can start at any time in life.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Overactive parathyroid glands (hyperparathyroidism)
- Pituitary tumors
- Pancreatic tumors
- Peptic ulcers and abdominal pain
- Thinning of the bones
- Multiple fatty lumps (lipomas)
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, digestive system specialists, genetic specialists and hormone specialists.
- 3Consider genetic testing
Changes in MEN1 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); Digestive system specialists (gastroenterologists); 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 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
This condition is caused by changes in the MEN1 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: endocrine adenomatosis multiple; mea i; mea type 1; mea type i; mea, type 1; men 1
Patient organizations
- Association for Multiple Endocrine Neoplasia DisordersMultiple endocrine neoplasia, type 1 · United States
- International Neuroendocrine Cancer AllianceMultiple endocrine neoplasia, type 1 · United States
You are more than your diagnosis
Perspectives from people navigating life with Multiple endocrine neoplasia, type 1.
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