Health condition
Phaeochromocytoma patient guide
A phaeochromocytoma is a rare adrenal tumour that releases surges of adrenaline, causing episodes of pounding heart, sweating, headache and soaring blood pressure.
Key points
What matters most, at a glance.
The essentials in plain English - symptoms, when to seek help, who to see and what treatment looks like.
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Classic triad: episodic headache, sweating and palpitations, often with very high blood pressure
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Suspect it with hard-to-control or spiking blood pressure, especially in younger people
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Diagnosed with plasma or urine metanephrines, then CT or MRI to locate the tumour
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About a third are linked to inherited genes, so genetic testing is offered
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Treated with medication first, then surgical removal - curative in most cases
Understanding it
About Phaeochromocytoma patient guide, and what to do next.
Phaeochromocytomas arise from the adrenaline-producing core of the adrenal gland and discharge catecholamines in unpredictable bursts. Attacks feel like sudden dread: thumping heartbeat, drenching sweat, pallor, headache and blood pressure that can spike dangerously - sometimes triggered by exertion, certain drugs or even abdominal pressure. Between episodes everything can look deceptively normal.
The screening test is metanephrines in blood or urine, which are highly sensitive; imaging then locates the tumour. Surgery is the cure, always after careful drug preparation with alpha-blockade to prevent a blood pressure crisis during the operation, and genetic testing follows because a substantial minority are hereditary. Most people start with their GP, who can refer to an endocrinologist. NHS routine referrals often take 20-45+ weeks depending on where you live, while a private consultation is typically available within about two weeks.
A quiet reminder
This guide is for information, not medical advice.
Your GP knows your history and can tell you which parts apply to you. If in doubt, see them.
Frequently asked
Common questions about Phaeochromocytoma patient guide.
Quick, plain-English answers to what people ask us most.
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What is a phaeochromocytoma?
A phaeochromocytoma is a rare adrenal gland tumour that produces excess stress hormones (adrenaline and noradrenaline), causing significant swings in blood pressure and related symptoms.
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What causes a phaeochromocytoma?
Many cases occur sporadically, but a substantial proportion, particularly in younger patients, are linked to inherited genetic conditions such as MEN2 syndrome or von Hippel-Lindau disease.
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What are the symptoms?
The classic pattern is episodes of pounding headache, heavy sweating, a racing heart, and anxiety, often accompanied by a sharp rise in blood pressure. Some people instead have persistently elevated blood pressure without distinct spells.
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Is phaeochromocytoma serious?
Yes, it can cause dangerous blood pressure crises, particularly if the diagnosis is missed and the person undergoes surgery, anaesthesia, or takes certain medications without appropriate preparation, so timely diagnosis matters.
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Is phaeochromocytoma hereditary?
It can be, with a significant minority linked to inherited genetic syndromes, which is why genetic testing and counselling for relatives is often recommended after diagnosis.
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Can phaeochromocytoma be cured?
Yes, most phaeochromocytomas can be cured with surgical removal, provided the patient is carefully prepared beforehand with medication to control blood pressure and prevent complications during surgery.
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How is phaeochromocytoma treated?
Treatment starts with medication to block the effects of excess adrenaline and control blood pressure over one to two weeks, followed by surgical removal of the tumour, usually via keyhole surgery.
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How long does recovery take after surgery?
Most people recover from the surgery itself within a few weeks, and blood pressure typically normalises soon after the tumour is removed, though ongoing monitoring is recommended long-term.
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Phaeochromocytoma vs essential hypertension — what's the difference?
Essential hypertension is common high blood pressure without a single identifiable cause, while phaeochromocytoma is a specific, treatable tumour causing high blood pressure, often with distinctive episodic symptoms like sweating and palpitations that prompt specific testing.
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When should I see a specialist, and how quickly can I be seen privately?
See an endocrinologist if you have episodes of severe headache, sweating, and palpitations with high blood pressure. Private endocrine specialist assessment is usually available within about two weeks, much sooner than typical NHS waiting times.