Living with Multiple endocrine neoplasia, type 2
An inherited condition in which thyroid, adrenal, or parathyroid glands become overactive or form tumors.
Understanding Multiple endocrine neoplasia, type 2
The thyroid is affected almost all of the time, the adrenal glands about half the time, and the parathyroid glands about 20 percent of the time. The adrenal tumor is a pheochromocytoma, and the thyroid tumor is a medullary carcinoma of the thyroid. Many tumors can appear in the same person, but not necessarily at the same time. Features are fairly consistent within a family.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Thyroid cancer (medullary thyroid carcinoma)
- Adrenal tumor (pheochromocytoma)
- Sudden high blood pressure
- Headache, sweating, and palpitations
- Anxiety and paleness
- Enlarged parathyroid glands
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.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
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
GARD says it is caused by a defect in the RET gene and is usually inherited in an autosomal dominant pattern, which means a changed copy of the gene from one parent can be enough to cause it.
Also known as: familial chromaffinomatosis; mea, type 2; men, type 2; men2; multiple endocrine adenomatosis, type 2; multiple endocrine neoplasia type 2
Patient organizations
- Association for Multiple Endocrine Neoplasia DisordersMultiple endocrine neoplasia, type 2 · United States
- International Neuroendocrine Cancer AllianceMultiple endocrine neoplasia, type 2 · United States
You are more than your diagnosis
Perspectives from people navigating life with Multiple endocrine neoplasia, type 2.
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