Pheochromocytoma: Symptoms, Diagnosis, and Treatment
Pheochromocytoma is a rare tumor that makes excess adrenaline-like hormones. It usually grows in the adrenal glands above the kidneys. Too much hormone causes spikes in blood pressure, fast heart rate, sweating, headaches, and anxiety. These episodes can come out of the blue and feel terrifying.
How doctors find it
Most doctors start with blood or urine tests. The best tests measure metanephrines - hormones broken down from adrenaline. A plasma free metanephrine or a 24-hour urine fractionated metanephrines test is common. If tests look abnormal, imaging follows. A CT or MRI of the abdomen usually finds the tumor. Sometimes a nuclear scan (MIBG or PET) is needed for tricky cases or metastatic disease.
Treatment you can expect
Surgery to remove the tumor is the main cure. Before surgery you get medication to control blood pressure and prevent dangerous spikes during the operation. Doctors usually start alpha blockers like phenoxybenzamine or doxazosin for days to weeks before surgery. Only after alpha blockade is steady do they add a beta blocker if needed for fast heart rate. Careful fluid and salt intake before surgery help avoid low blood pressure after the tumor is removed.
Most pheochromocytomas are benign, but some can be malignant or start outside the adrenal glands, called paragangliomas. If cancer spreads, treatment may include surgery, targeted radiotherapy, or systemic options. Nuclear medicine scans help find spread and guide therapy.
Up to a third of patients have a genetic mutation. Genes often tested include RET, VHL, NF1, and SDHx. If a mutation is found, family members may need screening. Genetic counseling makes this easier and clearer.
Certain drugs and foods can trigger hormone release and make symptoms worse. Common culprits include decongestants, some antidepressants, stimulants, and tyramine-rich foods. Tell your medical team about all medicines and supplements. Wear a medical ID if you have a confirmed diagnosis.
Call emergency services if you have a sudden very high blood pressure, chest pain, severe headache, fainting, or breathing trouble. These could be signs of a hypertensive crisis.
After surgery, doctors check metanephrine levels to confirm the tumor is gone. Lifelong follow-up is often recommended because pheochromocytoma can recur years later. Work closely with an endocrinologist for the best long-term plan.
Practical tips: keep a list of medicines that can trigger symptoms and share it with every new doctor. If you're pregnant or planning pregnancy, tell your care team early - pheochromocytoma in pregnancy is rare but can be dangerous and needs coordinated care. For travel, bring extra prescriptions and your medical records summary. After diagnosis, consider joining a patient support group or online forum to learn from others. Psychological stress is real; ask for help if anxiety or panic attacks linger. Finally, always follow follow-up schedules and ask your doctor for a written plan for emergencies. Keep emergency contacts and genetic test results accessible at all times.
