Living with Multiple endocrine neoplasia type 2B
An inherited condition with thyroid and adrenal tumors, bumps on the lips, eyelids, and tongue, and a tall, slender build.
Understanding Multiple endocrine neoplasia type 2B
Common tumors include medullary thyroid carcinoma and adrenal gland tumors called pheochromocytomas. Other features can include bumps on the lips, eyelids, and tongue, a body type with long arms, legs, and fingers, and very loose joints. Diagnosis is suspected from a personal or family history of these tumors or from physical signs, and genetic testing can confirm it. It often begins in childhood.
Signs & symptoms
GARD doesn't list a set of most common symptoms for this condition. Its summary describes these features:
- Thyroid cancer (medullary thyroid carcinoma)
- Adrenal tumors (pheochromocytoma)
- Bumps on the lips, eyelids, and tongue
- Long arms, legs, and fingers
- Very loose joints
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 RET 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 a specific change in the RET 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: men 2b; men 2b - multiple endocrine neoplasia type 2b; men 2b syndrome; men iib; men type 2b; men type iib
Patient organizations
- Association for Multiple Endocrine Neoplasia DisordersMultiple endocrine neoplasia type 2B · United States
- International Neuroendocrine Cancer AllianceMultiple endocrine neoplasia type 2B · United States
You are more than your diagnosis
Perspectives from people navigating life with Multiple endocrine neoplasia type 2B.
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