Living with Pheochromocytoma
A rare tumor, usually in an adrenal gland, that often makes too many hormones and can cause high blood pressure and sweating.
Understanding Pheochromocytoma
These tumors are usually benign (not cancer), but they often cause the adrenal gland to make too many hormones. This can lead to high blood pressure, headaches, sweating, a pounding heart, shakiness, or looking very pale. Sometimes it is part of multiple endocrine neoplasia syndrome (MEN). Doctors use lab and imaging tests to diagnose it, and surgery is the most common treatment.
Signs & symptoms
Symptoms vary from person to person. GARD says they may include:
- High blood pressure
- Headaches
- Sweating
- Pounding heartbeat
- Shakiness
- Very pale skin
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
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
National Adrenal Diseases Foundation and Pheo Para Alliance may keep lists of experts for this condition.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- Expert care
- Expert lists: National Adrenal Diseases Foundation, Pheo Para Alliance
- 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 National Adrenal Diseases Foundation 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 lists this condition as autosomal dominant, which means one changed copy of a gene is enough to cause it. Sometimes it is part of multiple endocrine neoplasia syndrome (MEN).
Also known as: chromaffin tumors; chromaffin tumours; phaeochromocytoma
Patient organizations
- National Adrenal Diseases FoundationPheochromocytoma · United States
- Pheo Para AlliancePheochromocytoma · United States
- American Cancer SocietyPheochromocytoma · United States
You are more than your diagnosis
Perspectives from people navigating life with Pheochromocytoma.
Explore research for Pheochromocytoma
Explore actively recruiting Pheochromocytoma studies with HealthSpark.
Find actively recruiting studies for Pheochromocytoma with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
Powered by HealthSpark, our AI chat helper
I can help you find recruiting Pheochromocytoma studies. Enter a ZIP code, address or city below and I'll look within 50 miles.
Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
Get Signals for Pheochromocytoma
Stay in the loop with community stories and updates from medical researchers.
Create a living journal that talks back
HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your Pheochromocytoma experiences more deeply and prepare for better conversations with your doctors and care team.
Your journal is private. Sharing your story publicly is a separate choice, made with Share your story above.