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

A sudden, crushing headache. Your heart pounds like it’s trying to escape your chest. You break out in cold sweat, even when you’re sitting still. Your blood pressure spikes so high it feels like your veins might burst. Then, just as quickly, it’s gone. If this has happened to you-or someone you know-more than once, it’s not just stress. It could be a pheochromocytoma, a rare but dangerous tumor hiding in your adrenal gland.

Most people with high blood pressure have what’s called essential hypertension. It’s steady, slow, and managed with lifelong pills. But pheochromocytoma is different. It’s unpredictable. It strikes in waves. And unlike most causes of high blood pressure, it 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 like adrenaline to help you respond to danger. But this tumor? It doesn’t know when to stop. It floods your body with catecholamines-mainly epinephrine and norepinephrine-constantly, even when there’s no threat.

It’s not cancer in most cases. About 90% of these tumors are benign. But even a benign tumor can be life-threatening because of the hormone overload. The average size is about 3 to 5 centimeters, but they can grow larger. And while most are in the adrenal glands, 10% appear elsewhere in the abdomen or chest-those are called paragangliomas.

What makes this tumor tricky is how rare it is. Only 0.1% to 0.6% of people with high blood pressure have one. That means most doctors will go their entire careers seeing just one or two cases. And because the symptoms mimic panic attacks, migraines, or even heart problems, it’s often missed.

The Classic Triad: Headache, Sweating, and Racing Heart

If you’ve ever had a panic attack, you know how scary it feels. But pheochromocytoma spells are different. They’re not triggered by stress alone. They can come from lifting something heavy, going to the bathroom, getting an injection, or even lying down.

The three most common signs are:

• Severe headaches (85-90% of patients)
• Profuse, drenching sweats (75-80%)
• Heart palpitations or a pounding pulse (70-75%)

Other symptoms include sudden paleness, nausea, anxiety that feels like a panic attack, weight loss without trying, and abdominal pain. Some people have high blood pressure that spikes above 180/110 mmHg during these episodes. Others develop low blood pressure when standing up-because the tumor messes with how your body controls circulation.

These episodes can last from a few minutes to an hour. Then, you feel fine again. That’s why many patients are told they’re just anxious. One woman in a support group waited four years and saw seven doctors before her blood pressure hit 240/130 during an ER visit-and they finally ran the right test.

How Is It Diagnosed?

There’s no single scan that catches this tumor. First, you need a blood or urine test that measures metanephrines-breakdown products of adrenaline and noradrenaline.

The gold standard is a 24-hour urine collection for fractionated metanephrines. It’s 96-99% sensitive. Blood tests for plasma-free metanephrines are almost as good, with 97% sensitivity. If your levels are more than three times the upper limit of normal, you almost certainly have a pheochromocytoma.

But here’s the catch: borderline results happen. About 15-20% of people have slightly elevated levels without a tumor. That’s why doctors don’t jump to imaging right away. If the blood or urine test is clearly positive, then they use CT or MRI to find the tumor’s location.

Advanced imaging like 68Ga-DOTATATE PET/CT is becoming more common. It’s better at spotting small tumors and those outside the adrenal glands. It’s especially useful for people with inherited forms of the disease.

Why Genetic Testing Isn’t Optional

Here’s something many people don’t realize: up to 40% of pheochromocytoma cases are inherited. That means you didn’t just get unlucky-you might carry a gene mutation passed down from a parent.

The most common genes involved are SDHB, SDHD, VHL, RET, and NF1. If you have an SDHB mutation, your risk of the tumor turning cancerous jumps to 30-50%. That’s why every single person diagnosed with this tumor should get genetic testing.

Even if no one in your family has had it, you could still carry the mutation. Studies now show that nearly a quarter of people with no family history still have a hidden genetic cause. Testing isn’t just for your sake-it’s for your children, siblings, and parents. If they carry the same gene, they can be monitored before symptoms start.

Preparation for Surgery: It’s Not Just About Cutting Out the Tumor

Surgery is the cure. But if you go into the operating room without proper preparation, you could die.

Before surgery, you need to take alpha-blockers-usually phenoxybenzamine-for at least 7 to 14 days. These drugs block the effects of excess adrenaline, preventing your blood pressure from spiking during the operation. Without them, the risk of a fatal hypertensive crisis during surgery is 30-50%.

You also need to drink more fluids and eat more salt. The tumor causes your blood vessels to stay tight for months or years, so your body has less fluid in circulation. Without volume expansion, your blood pressure can crash after the tumor is removed.

Most surgeries today are done laparoscopically-through small cuts using a camera and tools. It’s less painful, and recovery is faster. About 85% of unilateral cases are done this way. But if the tumor is very large, stuck to nearby organs, or there’s unexpected bleeding, the surgeon may need to switch to an open procedure.

What Happens After Surgery?

For most people, life changes dramatically after surgery.

Within 48 hours, blood pressure often drops to normal. Many patients stop all their blood pressure medications within a few weeks. One man on a patient forum said he was off all meds after three weeks-something he never thought possible after years of struggling with hypertension.

But not everyone has a smooth recovery.

If both adrenal glands are removed-which happens in about 10% of cases, especially with hereditary tumors-you’ll need to take lifelong steroid replacement: hydrocortisone and fludrocortisone. Without them, you can go into adrenal crisis, which can be fatal.

Some people feel exhausted for months after surgery. About 12% report chronic fatigue lasting six months or longer. That’s not just physical recovery-it’s your body relearning how to regulate itself without the tumor’s constant hormone surges.

What About Cancer?

Only about 10% of pheochromocytomas are malignant. But figuring out which ones are cancerous is hard. It’s not about how the tumor looks under a microscope. It’s about whether it spreads.

If the tumor grows into nearby tissue or spreads to lymph nodes, bones, or liver, it’s cancer. The survival rate drops sharply after metastasis. Five-year survival for metastatic cases is only about 50%.

For those cases, treatment options are limited but growing. New therapies like 177Lu-DOTATATE (a type of targeted radiation) are showing promise, with response rates around 65%. Clinical trials are also testing drugs like Belzutifan for people with VHL-related tumors.

For now, if you’ve had surgery and your tumor was malignant, you’ll need lifelong monitoring-annual MRI scans, blood tests, and check-ins with an endocrinologist.

Why This Matters More Than You Think

Pheochromocytoma is rare, but it’s one of the few causes of high blood pressure that can be completely cured. Most other forms-like kidney disease or hormonal imbalances-require lifelong treatment. This tumor? Remove it, and the high blood pressure often disappears forever.

But because it’s rare and its symptoms look like anxiety, it’s underdiagnosed. That’s why if you have unexplained, episodic high blood pressure with headaches, sweating, and palpitations, you need to ask for a metanephrine test. Don’t let it be labeled as stress. Don’t let it be ignored.

Early diagnosis saves lives. And surgery, when done right, gives people back their health.