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

A sudden spike in blood pressure so high it sends you to the ER. A pounding heart, drenching sweat, and a headache that feels like your skull is splitting open-all out of nowhere. If you’ve ever been told it’s just anxiety, you’re not alone. But what if it’s not anxiety? What if it’s a rare, hidden tumor in your adrenal gland called a pheochromocytoma?

What Exactly Is a Pheochromocytoma?

A pheochromocytoma is a tumor that grows in the adrenal medulla-the inner part of your adrenal glands, which sit right on top of your kidneys. These glands normally make hormones like adrenaline to help you respond to stress. But when this tumor forms, it doesn’t know when to stop. It floods your body with catecholamines-mainly adrenaline and noradrenaline-day and night, even when you’re sitting still watching TV.

It’s rare. Only about 1 in every 200 people with high blood pressure has one. But here’s the kicker: if you have this tumor, your high blood pressure isn’t just stubborn-it’s explosive. Systolic readings can jump above 180 mmHg during a ‘spell,’ sometimes even hitting 240. And these episodes don’t come from stress, exercise, or caffeine. They come from the tumor itself.

First described in 1886, pheochromocytoma was once a death sentence. Today, it’s one of the few endocrine tumors that can be completely cured-with surgery. But only if you get diagnosed.

The Classic Triad: Headache, Sweating, Palpitations

Most people with pheochromocytoma don’t have constant symptoms. They have spells. These can last minutes or up to an hour. During one, you might feel:

• A crushing headache (85-90% of cases)
• So much sweating you need to change clothes (75-80%)
• Your heart racing, skipping, or pounding like it’s trying to escape your chest (70-75%)

Other signs include pale skin, nausea, belly pain, unexplained weight loss, and panic attacks that don’t make sense. You might feel like you’re having a heart attack-or worse, you’re losing your mind.

Triggers? They’re sneaky. Physical activity, emotional stress, even going under anesthesia for another surgery can set one off. In rare cases, urination triggers it-if the tumor is in the bladder wall (called a paraganglioma). And here’s the twist: some people drop their blood pressure when standing up, even while their resting pressure is sky-high. That’s because the tumor messes with your body’s natural blood pressure control system.

Why Most Doctors Miss It

Primary care doctors see maybe one or two pheochromocytoma cases in their entire career. So when a 35-year-old comes in with racing heart and sweating, the default assumption is panic disorder. Or migraines. Or even menopause.

That’s why the average time from first symptom to diagnosis is over three years. A quarter of patients are initially treated for anxiety. One patient on a support forum said: “After four years and seven doctors, I was diagnosed when my blood pressure hit 240/130 during an ER visit-for what they thought was a panic attack.”

Doctors aren’t lazy. They’re just working with limited information. The symptoms overlap too much with common conditions. But there’s one thing that doesn’t: the biochemical test.

How It’s Diagnosed: The Blood and Urine Test That Saves Lives

The gold standard isn’t a scan. It’s not an MRI or CT. It’s a simple 24-hour urine test for fractionated metanephrines-or a blood test for plasma-free metanephrines.

Metanephrines are the breakdown products of adrenaline and noradrenaline. When a pheochromocytoma is active, these levels shoot up. These tests are 96-99% sensitive. If your metanephrine levels are three times the upper limit of normal, you almost certainly have a tumor.

That’s why experts say: Test before you image. Scanning too early leads to false positives. Some people have borderline elevations due to stress, medications, or even caffeine. Over-testing causes unnecessary anxiety and procedures.

And here’s something many don’t know: the sample has to be handled right. Blood for plasma metanephrines must be drawn with the patient lying down, rested, and without caffeine. The tube must be kept ice-cold and acidified immediately. Mess that up, and the results are useless.

Genetics: It’s Not Always Just Bad Luck

One in three people with pheochromocytoma has a genetic mutation. That’s not rare-it’s the norm. Mutations in genes like SDHB, SDHD, VHL, RET, and NF1 are common. These aren’t just family history stories. Even if no one in your family has had it, you could still carry a mutation.

SDHB mutations are especially dangerous. They’re linked to a 30-50% lifetime risk of malignant pheochromocytoma. That’s why the National Comprehensive Cancer Network now says: Test everyone. Not just those with a family history. Everyone.

Genetic testing isn’t optional. It changes everything-how often you get scanned, whether your kids need testing, and even what kind of surgery you get. A patient with an SDHB mutation might need full-body MRIs every year for life.

Surgery: The Only Cure

Here’s the good news: if your tumor is benign-and 90% of them are-you can be cured. Surgery to remove the adrenal gland (adrenalectomy) is the only treatment that works.

But you can’t just walk into the operating room. If you do, you risk a hypertensive crisis so severe it can kill you. That’s why preoperative prep is non-negotiable.

For 7 to 14 days before surgery, you take alpha-blockers-usually phenoxybenzamine. This relaxes your blood vessels and stops the tumor’s adrenaline from slamming them shut. You also drink plenty of fluids and eat a high-sodium diet. Why? Because your body has been in constant vasoconstriction for months or years. Your blood volume is low. You’re dehydrated, even if you don’t feel it. Replenishing fluids prevents dangerous drops in blood pressure after the tumor is removed.

Most surgeries today are done laparoscopically-small incisions, quick recovery. Over 85% of unilateral cases are done this way. But if the tumor is large or stuck to nearby organs, the surgeon may need to switch to open surgery. That happens in 5-8% of cases.

Recovery is fast. Most people leave the hospital in 1-2 days. Many are back to work in two weeks. And here’s what patients say: “My blood pressure normalized within 48 hours. I was off all meds in three weeks.”

The Catch: What Happens After Surgery?

Not everyone walks away without consequences.

If you had both adrenal glands removed (bilateral adrenalectomy), you’ll need lifelong steroid replacement: hydrocortisone and fludrocortisone. Your body can’t make cortisol or aldosterone anymore. Miss a dose, and you could go into adrenal crisis-low blood pressure, vomiting, shock. It’s life-threatening.

Even with one gland removed, some people feel exhausted for months. Fatigue lasting over six months happens in about 12% of cases. No one talks about this much. But it’s real.

And for the 10% with malignant tumors? It’s different. Metastatic pheochromocytoma is rare, but deadly. Five-year survival drops to 50%. New treatments like PRRT (peptide receptor radionuclide therapy) are showing promise-65% response rates in early trials. Drugs like Belzutifan, originally for kidney cancer, are now being tested in VHL-related cases.

What Happens If You Don’t Get Treated?

Pheochromocytoma doesn’t go away on its own. Left untreated, the constant surge of adrenaline can damage your heart. You could develop heart failure, irregular rhythms, or even a stroke. Some patients have heart attacks triggered by a single spell.

And the longer you wait, the harder it gets. Tumors grow. They spread. They become harder to remove. Every year of delay increases your risk of complications.

How It Compares to Other Causes of High Blood Pressure

Essential hypertension affects nearly half of U.S. adults. It’s slow, steady, and silent. You don’t feel it until your kidneys or heart are damaged.

Renal artery stenosis? It causes high blood pressure by reducing blood flow to the kidneys. Primary aldosteronism? It makes your body hold onto salt and water. Neither causes sweating, palpitations, or sudden spikes.

That’s the difference. Pheochromocytoma isn’t just high blood pressure. It’s high blood pressure with a storm inside you.

What Comes Next: Monitoring and Long-Term Care

Even after successful surgery, you’re not done. You need lifelong follow-up.

• Annual urine or blood tests for metanephrines
• Imaging every 1-2 years if you had a genetic mutation
• Genetic counseling for family members

If you had a bilateral removal, you’ll need to wear a medical alert bracelet. You’ll need to carry emergency injectable hydrocortisone. You’ll learn to recognize the early signs of adrenal crisis.

And if you’re one of the lucky ones-benign, unilateral, no genetic mutation-you still need to know: this could come back. Recurrence rates are low, but they exist. Stay vigilant.

Pheochromocytoma isn’t just a medical oddity. It’s a hidden killer that can be erased with the right test and the right surgery. The problem isn’t the tumor. The problem is not knowing it’s there.

If you’ve had unexplained spells of high blood pressure, sweating, and heart pounding-especially if you’ve been told it’s anxiety-ask your doctor for a metanephrine test. It’s simple. It’s cheap. And it could save your life.