Pheochromocytoma: What It Is, How It Causes High Blood Pressure, and Why Surgery Is Often the Cure

Most people with high blood pressure never find out why. They take pills, monitor their numbers, and hope for the best. But for a small number of people-about 1 in every 200 with hypertension-the cause is a rare, hidden tumor: pheochromocytoma. It’s not just another case of essential hypertension. It’s a tumor in the adrenal gland that floods the body with adrenaline-like chemicals, turning everyday moments into life-threatening spikes in blood pressure. And unlike most high blood pressure, this one can be cured-with surgery.

What Exactly Is a Pheochromocytoma?

A pheochromocytoma is a tumor that grows in the adrenal medulla, the inner part of the adrenal glands sitting on top of each kidney. These glands normally make hormones that help your body respond to stress-like adrenaline and noradrenaline. But when a tumor forms, it doesn’t turn off. It keeps pumping out these chemicals, even when you’re sitting still, sleeping, or watching TV.

This isn’t cancer in the usual sense. About 90% of these tumors are benign-they don’t spread. But even a non-cancerous tumor can be deadly because of what it does to your blood pressure. The rest, around 10%, can become malignant and spread to other organs. That’s why catching it early matters.

These tumors are rare. Only 0.1% to 0.6% of people with high blood pressure have one. But for those who do, the symptoms are impossible to ignore once you know what to look for.

The Classic Triad: Headaches, Sweating, and Racing Heart

If you’ve ever had a panic attack, you know what it feels like-heart pounding, palms sweating, head throbbing. Now imagine that happening multiple times a day, without warning, and not because you’re scared. That’s pheochromocytoma.

The three most common symptoms-headaches, sweating, and palpitations-show up in 85% or more of patients. These aren’t mild. Headaches are often severe, throbbing, and come on suddenly. Sweating isn’t just a little dampness-it’s drenching, soaking clothes, even in cool rooms. Palpitations feel like your heart is trying to escape your chest.

Other signs include:

• Episodes of extremely high blood pressure-sometimes over 180/120 mmHg
• Pale skin during attacks
• Abdominal pain or nausea
• Unexplained weight loss
• Anxiety or panic attacks that don’t respond to therapy

These symptoms don’t happen all the time. They come in waves-called spells or paroxysms. Triggers? Physical activity, emotional stress, anesthesia during surgery, or even urinating (if the tumor is in the bladder wall, called a paraganglioma). That’s why many patients are misdiagnosed for years. Doctors think it’s anxiety, migraines, or even menopause.

Why This Tumor Causes Dangerous High Blood Pressure

Normal blood pressure stays steady. Pheochromocytoma doesn’t. The tumor releases bursts of catecholamines-epinephrine and norepinephrine-which tighten blood vessels and force the heart to beat harder and faster. That’s the body’s natural fight-or-flight response, but here, it’s happening nonstop.

What makes this worse is that the body’s ability to regulate blood pressure gets damaged over time. Many patients have something called orthostatic hypotension-meaning their blood pressure crashes when they stand up. So they might go from a blood pressure of 220/110 during an attack to 90/50 when they stand up to get a glass of water. That’s dangerous. It’s why many patients end up in the ER after fainting.

Essential hypertension-the kind most people have-doesn’t behave this way. It’s steady. It doesn’t spike and crash. It doesn’t come with sweating and palpitations. That’s the key difference. If your high blood pressure comes with those extra symptoms, you need to get tested.

How Doctors Diagnose It

There’s no single test that catches pheochromocytoma by accident. It’s found because doctors suspect it. And they suspect it when the symptoms don’t fit.

The gold standard is a 24-hour urine test for fractionated metanephrines. These are the breakdown products of adrenaline and noradrenaline. If your levels are more than three times the upper limit of normal, the chance you have a tumor is over 95%. Blood tests for plasma-free metanephrines are just as accurate and faster.

Imaging-like CT or MRI-comes after the blood or urine test. Why? Because many people have small adrenal bumps that are harmless. If you scan everyone with high blood pressure, you’ll find lots of false positives. But if your metanephrines are sky-high, then imaging tells you where the tumor is and if it’s on one or both sides.

Here’s something most patients don’t know: up to 40% of pheochromocytomas are linked to inherited gene mutations. Genes like SDHB, SDHD, VHL, and RET. That’s why genetic testing is now recommended for everyone diagnosed-even if no one in their family has had it. A mutation might mean you’re at risk for other tumors, or that your children could inherit it.

Surgery: The Only Cure

Medications can’t cure pheochromocytoma. They can only control symptoms. The only way to truly fix it is to remove the tumor. And when done right, surgery works.

Over 85% of patients see their blood pressure return to normal after the tumor is removed. Many stop all their blood pressure meds within weeks. One patient on a support forum wrote: “My BP was 210/120 for years. After surgery, it was 115/75. No pills.”

But surgery isn’t simple. You can’t just go in and pull out the tumor. Because the tumor is full of adrenaline, touching it can trigger a massive surge-causing a heart attack, stroke, or death. That’s why preparation is everything.

At least 7 to 14 days before surgery, patients start alpha-blockers like phenoxybenzamine. These drugs block the effects of adrenaline on blood vessels. Doctors also make patients drink plenty of fluids and eat a high-salt diet. Why? Because the tumor causes chronic blood vessel tightening, which shrinks the body’s blood volume. If you don’t replace that volume before surgery, your blood pressure can crash when the tumor is removed.

Most surgeries today are done laparoscopically-small incisions, camera, and tools. It’s less painful and recovery is faster. About 85% of cases use this method. But if the tumor is large or stuck to major blood vessels, the surgeon may need to switch to open surgery. That’s not a failure-it’s safety.

What Happens After Surgery

Recovery is usually quick. Most people leave the hospital in 1 to 2 days. Many are back to work in two weeks. But there are risks.

If both adrenal glands are removed-which happens in about 10% of cases-you’ll need to take steroid replacement for life: hydrocortisone and fludrocortisone. Without them, your body can’t handle stress. You could go into adrenal crisis-low blood pressure, vomiting, confusion, even death.

Even if only one gland is removed, some people feel tired for months. It’s not just physical recovery-it’s your nervous system relearning how to regulate itself without the constant adrenaline flood. About 12% of patients report chronic fatigue lasting six months or longer.

Long-term follow-up is essential. Even benign tumors can come back. Annual urine tests and imaging are recommended. And if you have an SDHB mutation, you need yearly whole-body MRIs. These tumors can grow in other places-like the chest or abdomen-and are more likely to become cancerous.

Why So Many People Are Misdiagnosed

Primary care doctors see maybe one or two cases in their entire career. Most have never treated one. So when a 35-year-old comes in with panic attacks and high blood pressure, it’s easy to say: “It’s anxiety.”

Studies show 25% of patients are initially diagnosed with anxiety disorders. One woman spent four years seeing seven doctors before her blood pressure hit 240/130 in the ER-and someone finally ordered the right test.

Another problem: borderline test results. Some people have slightly elevated metanephrines but no tumor. That’s called biochemical false positives. It happens in 15-20% of cases. That’s why doctors must match symptoms with lab results-not just treat the numbers.

There’s also a big gap in awareness. Many emergency rooms still don’t test for pheochromocytoma when someone comes in with unexplained hypertension and sweating. That’s changing, slowly. But if you’ve had these symptoms for years and nothing’s helped, ask your doctor about it.

What’s New in Treatment

For the 10% with malignant tumors that spread, surgery isn’t enough. New treatments are emerging. One is PRRT-peptide receptor radionuclide therapy. It uses radioactive particles to target tumor cells. Early results show a 65% response rate.

Another promising drug is Belzutifan, originally developed for kidney cancer in people with VHL syndrome. It’s now being tested for pheochromocytoma linked to that same gene. Early trials show it can shrink tumors without surgery.

Imaging is also getting better. Gallium-68 DOTATATE PET/CT scans are now more accurate than traditional CT or MRI-catching tiny tumors that older scans miss. This helps surgeons plan better and find hidden tumors before they grow.

When to Suspect It

You don’t need to be a doctor to ask the right question. If you have high blood pressure AND any of these, talk to your doctor about pheochromocytoma:

• Episodic headaches, sweating, and heart racing
• High blood pressure that doesn’t respond to three or more medications
• Family history of adrenal tumors, kidney cancer, or neurofibromatosis
• Unexplained weight loss with high blood pressure
• High blood pressure during pregnancy
• Episodes triggered by anesthesia, stress, or urination

It’s not common. But it’s curable. And if you’re one of the people who’ve been told it’s all in your head-ask for the test. One simple urine or blood test could change your life.