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

A rare tumor in your adrenal gland can send your blood pressure skyrocketing for no reason at all. You might feel like you're having a panic attack-sweating buckets, heart racing, head pounding-but no anxiety medication helps. That’s because it’s not anxiety. It’s pheochromocytoma, a tumor that tricks your body into flooding your system with adrenaline. And if you don’t know what you’re dealing with, you could end up in the ER with a blood pressure of 240/130-or worse.

What Exactly Is a Pheochromocytoma?

Pheochromocytoma is a tumor that grows in the middle part of the adrenal gland, called the medulla. These glands sit on top of your kidneys and normally make small amounts of adrenaline and noradrenaline to help you respond to stress. But when a pheochromocytoma forms, it starts pumping out way too much of these hormones-on its own, even when you’re sitting still.

It’s not cancer in most cases. About 90% of these tumors are benign. But that doesn’t mean they’re harmless. The hormones they release cause sudden, violent spikes in blood pressure. These episodes can last minutes or hours, and they often come without warning. Some people get them when they exercise, get scared, or even when they pee-if the tumor is in the bladder wall (called a paraganglioma).

It’s rare. Only about 1 in 1,000 people with high blood pressure have this tumor. But because it’s so uncommon, most doctors don’t see it often. The average person waits over three years before getting the right diagnosis. Many are told they have anxiety, migraines, or panic disorder. That’s because the symptoms look exactly like them.

The Classic Triad: Headache, Sweating, Palpitations

If you’ve ever had a sudden episode where your heart felt like it was going to burst, your head throbbed like a drum, and you were drenched in sweat-even in a cool room-you might have experienced a pheochromocytoma spell.

These three symptoms happen together in most cases:

• Severe headaches (85-90% of patients)
• Profuse sweating (75-80%)
• Palpitations or racing heart (70-75%)

Other signs include:

• Blood pressure spikes above 180 mmHg systolic
• Pale or ashen skin
• Abdominal pain or nausea
• Unexplained weight loss
• Feelings of doom or panic

What makes this different from regular high blood pressure? Essential hypertension doesn’t come in waves. It’s steady. Your blood pressure is just always high. With pheochromocytoma, it’s like someone flips a switch. You go from normal to emergency in seconds. Then, just as suddenly, it drops-sometimes even too low, causing dizziness when you stand up.

Why Is It So Hard to Diagnose?

Most primary care doctors will see maybe one or two cases in their entire career. So when a patient walks in with high blood pressure and anxiety-like symptoms, the default assumption is stress or mental health.

But there’s a test that catches this every time: measuring metanephrines. These are breakdown products of adrenaline and noradrenaline. When the tumor is active, these chemicals flood your blood and urine.

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

But here’s the catch: some people have borderline results. That’s where things get messy. About 15-20% of people with slightly elevated levels don’t actually have a tumor. They’re told they might have one, get unnecessary scans, and live in fear. That’s why doctors don’t jump to imaging right away. First, you need solid biochemical proof.

Imaging: Finding the Tumor

Once the blood or urine test confirms the diagnosis, the next step is imaging. The old rule was the “10-10-10 rule”: 10% of tumors are in both adrenal glands, 10% are outside the adrenal gland (paragangliomas), and 10% are cancerous.

But newer data shows that’s outdated. In people with inherited gene mutations-like SDHB, VHL, or RET-the chance of multiple tumors or extra-adrenal tumors is much higher. That’s why genetic testing is now recommended for everyone diagnosed with pheochromocytoma, not just those with a family history.

CT or MRI scans find the tumor in most cases. But the newest tool is 68Ga-DOTATATE PET/CT. It’s more accurate than traditional scans, especially for small or extra-adrenal tumors. It’s not available everywhere yet, but in major centers, it’s becoming the go-to for staging.

Surgery: The Only Cure

Here’s the good news: if the tumor is caught early, surgery can cure you. In 85-90% of cases, blood pressure returns to normal after the tumor is removed. People who were on three or four blood pressure medications wake up after surgery and are off them within weeks.

But surgery isn’t simple. You can’t just go in and yank out the tumor. The tumor is basically a time bomb of adrenaline. If you touch it without preparing the body, the surge of hormones can cause a deadly hypertensive crisis.

That’s why pre-op preparation is non-negotiable.

For 7-14 days before surgery, patients take phenoxybenzamine, a drug that blocks adrenaline receptors. This stops the blood vessels from clamping down. Doctors also push patients to drink 2-3 liters of water a day and eat a high-sodium diet. Why? Because the tumor causes chronic blood vessel constriction, which shrinks your blood volume by 20-30%. You’re basically dehydrated in disguise. Replenishing fluids prevents dangerous drops in blood pressure during surgery.

The surgery itself is usually done laparoscopically-small incisions, camera, instruments. At high-volume centers, it’s successful in 95% of cases with under 2% major complications. But if the tumor is huge, stuck to nearby organs, or bleeding heavily, the surgeon may need to switch to open surgery. That’s rare, but it happens in 5-8% of cases.

What Happens After Surgery?

Recovery is quick for most. You’re usually out of the hospital in 1-2 days. Most people are back to work in two weeks.

But there are two big catches.

First, if you had a tumor on both adrenal glands-or if both had to be removed-you can’t make cortisol or aldosterone anymore. You’ll need lifelong steroid replacement: hydrocortisone and fludrocortisone. One patient described it as “a daily pill routine that reminds you you’re still not normal.”

Second, even if you’re cured, you need follow-up. About 12% of people report chronic fatigue for six months or longer after surgery. No one knows why. It’s not the steroids. It’s not the surgery. It just happens. And for those with SDHB mutations, there’s a 30-50% lifetime risk of developing another tumor-sometimes cancerous. They need yearly whole-body MRIs for life.

Genetic Testing Isn’t Optional

Thirty-five to forty percent of pheochromocytomas are tied to inherited gene mutations. That means if you have one, your siblings, children, or parents might have it too-and not even know it.

Genes like SDHB are especially dangerous. They’re linked to higher cancer risk and tumors in unusual places. If you test positive for SDHB, your doctor will want to scan your neck, chest, and abdomen regularly. Other genes like RET (linked to multiple endocrine neoplasia) or VHL (von Hippel-Lindau syndrome) mean you’re at risk for other tumors too-like kidney cancer or brain tumors.

That’s why genetic testing is now standard. It’s not just about you. It’s about your family.

What About the Future?

For the small number of people with metastatic pheochromocytoma, things are changing fast. New treatments like 177Lu-DOTATATE (a type of radiation therapy) are helping. In early trials, 65% of patients saw their tumors shrink or stop growing.

There’s also a new drug called Belzutifan, approved for VHL-related tumors. It blocks a protein called HIF-2α that tumors use to grow. Early results show it can shrink adrenal tumors without surgery.

And researchers are working on blood tests that can detect tumor DNA before the tumor even shows up on a scan. That could mean catching it years earlier.

Bottom Line: Don’t Ignore the Spells

If you’ve had episodes of extreme sweating, pounding headaches, and heart racing-with no clear trigger-don’t brush it off. Ask your doctor about metanephrines. It’s a simple blood or urine test. No needles, no fasting, no big hassle.

Most people with pheochromocytoma live normal lives after surgery. But if you don’t get diagnosed, the risks are real: stroke, heart attack, or sudden death during surgery for something else-like gallbladder removal-because the tumor wasn’t known.

It’s rare. But it’s treatable. And if you’re the one who’s been told you’re just anxious for years? You might not be. You might just have a tiny tumor in your adrenal gland that’s been screaming for attention.