Imagine your body flooding with adrenaline for no reason. Your heart pounds like youâre running from danger. Your head throbs. You sweat through your shirt-even in a cool room. Then, just as suddenly, it stops. You feel fine again. But it happens again. And again. For months. Years. Most doctors tell you itâs anxiety. Or stress. Or migraines. But what if itâs something else? Something rare, but treatable? Thatâs pheochromocytoma.
What Exactly Is a Pheochromocytoma?
A pheochromocytoma is a tumor that grows in the adrenal glands-small organs sitting right on top of your kidneys. Itâs not cancer in most cases, but itâs dangerous anyway. This tumor makes too much of the bodyâs natural stress hormones: epinephrine (adrenaline) and norepinephrine. These are the same chemicals your body releases when youâre scared or in danger. But with this tumor, theyâre released out of control-even when youâre just sitting on the couch.
Itâs rare. Only about 1 in 200 people with high blood pressure have it. But hereâs the thing: if you have unexplained spikes in blood pressure, pounding heart, sweating, and headaches, and no clear cause, this could be it. And unlike most causes of high blood pressure, this one can be cured.
Why Does It Cause Such Extreme High Blood Pressure?
Most people with high blood pressure have numbers that creep up slowly-140/90, then 150/95, then 160/100. Thatâs essential hypertension. Itâs common. Itâs managed with pills. But pheochromocytoma is different. It causes sudden, violent spikes. Blood pressure can jump to 200/120 or even 240/130 in minutes. These arenât gradual rises. Theyâre explosions.
These spikes happen in "spells"-episodes that last minutes to hours. They can be triggered by physical activity, stress, even going to the bathroom (if the tumor is in the bladder). After the spell, your blood pressure might crash. Some patients even get dizzy when they stand up. Thatâs because the tumor messes with your bodyâs natural ability to regulate blood pressure.
Three symptoms show up together in most cases: severe headaches (85-90% of patients), drenching sweats (75-80%), and a racing or pounding heartbeat (70-75%). If you have all three, especially if they come in waves, you need to get tested. Many people spend years being treated for panic attacks or migraines when the real problem is this tumor.
How Is It Diagnosed?
Doctors donât just guess. They test. The gold standard is a 24-hour urine test for metanephrines-breakdown products of adrenaline and noradrenaline. Blood tests for plasma-free metanephrines are also used. Both are over 95% accurate. If those tests are high, you have a tumor. No question.
But hereâs where things go wrong: if your levels are only slightly elevated, some doctors dismiss it. Thatâs a mistake. About 15-20% of cases have borderline results that still mean cancer. And if youâre young, have a family history, or have multiple symptoms, you shouldnât be told to "just relax."
After the blood or urine test confirms it, imaging follows. CT or MRI scans show where the tumor is. But newer scans-like 68Ga-DOTATATE PET/CT-are even better. They spot tiny tumors and even metastases that older scans miss.
And hereâs the critical part: all patients with pheochromocytoma should get genetic testing. Between 35% and 40% of cases are linked to inherited gene mutations-SDHB, SDHD, VHL, RET, NF1. These arenât just about your tumor. Theyâre about your family. If you have an SDHB mutation, your risk of cancer spreading is much higher. Your kids might be at risk too. Genetic testing isnât optional. Itâs part of treatment.
Why Surgery Is the Only Real Cure
Unlike most high blood pressure causes, pheochromocytoma can be completely cured-with surgery. Thatâs right. Remove the tumor, and the hormone floods stop. Blood pressure normalizes. Medications can often be stopped.
But you canât just go in for surgery like you would for an appendectomy. This tumor is dangerous to operate on. If the surgeon touches it before your body is properly prepared, the tumor can dump a massive wave of adrenaline into your bloodstream. That can cause a heart attack, stroke, or death.
Thatâs why pre-op preparation is non-negotiable. You need to take alpha-blockers-usually phenoxybenzamine-for at least 7 to 14 days before surgery. These drugs block the effects of adrenaline on your blood vessels. You also need to drink lots of fluids and eat a high-sodium diet. Why? Because your body has been in constant vasoconstriction. Your blood volume is low. Youâre dehydrated. Replenishing fluids prevents dangerous drops in blood pressure during surgery.
Most surgeries today are done laparoscopically-small cuts, camera, instruments. Itâs minimally invasive. Recovery is quick. Most people go home in 1-2 days. Back to work in two weeks. Success rates? Around 95% at major centers.
But thereâs a catch. If both adrenal glands have tumors-or if one is removed and the other is at risk-you might need both removed. That means youâll need to take lifelong steroid replacement: hydrocortisone and fludrocortisone. Your body wonât make its own stress hormones anymore. Youâll need to take pills every day. Itâs manageable, but itâs a big change.
What Happens After Surgery?
Most people feel better fast. Blood pressure drops. Headaches disappear. Sweating stops. One patient on a support forum wrote: "My blood pressure normalized within 48 hours. I was off all meds in three weeks." Thatâs the dream.
But not everyone has a smooth recovery. About 12% report chronic fatigue lasting six months or longer. Some develop adrenal insufficiency if both glands were removed. Others have lingering anxiety-after years of being told they were "just stressed," it takes time to unlearn that belief.
Long-term follow-up is key. Even if the tumor was benign and fully removed, you need annual blood tests. About 10% of pheochromocytomas come back. If you have an SDHB mutation, your risk of new tumors or cancer spreading is higher. Youâll need yearly whole-body MRIs.
How Is It Different From Other Causes of High Blood Pressure?
Essential hypertension? Thatâs the kind you get from aging, salt, weight, or genetics. Itâs steady. It doesnât come and go. You donât sweat buckets or get pounding headaches out of nowhere.
Renal artery stenosis? Thatâs a narrowed kidney artery. It causes high blood pressure, but not the triad of symptoms. Primary aldosteronism? Thatâs too much aldosterone. It causes low potassium, muscle cramps, not sweating or palpitations.
Even panic disorder can mimic pheochromocytoma. But panic attacks donât cause sustained high metanephrine levels. Blood tests make the difference. And hereâs the kicker: if you have pheochromocytoma and youâre treated for panic disorder, youâre not getting better. Youâre just being misdiagnosed.
The average time from first symptom to diagnosis? Over three years. One in four people are initially told they have anxiety. Thatâs unacceptable. If your symptoms are episodic, severe, and include the triad-get tested.
Whatâs New in Treatment?
For metastatic cases-where the cancer has spread-new treatments are emerging. Peptide receptor radionuclide therapy (PRRT) uses radioactive molecules to target tumor cells. Early results show a 65% response rate. Drugs like Belzutifan, originally for kidney cancer, are now being tested in VHL-related pheochromocytoma. Liquid biopsies to detect tumor DNA in blood are in development. These could mean earlier detection and less invasive monitoring.
But the biggest change? The shift in guidelines. The NCCN now says: test everyone for SDHB, even if you have no family history. Thatâs because 25% of "sporadic" cases have hidden mutations. That changes everything-your treatment, your familyâs screening, your long-term risk.
What Should You Do If You Suspect This?
If you have unexplained spells of:
- Severe headaches
- Profuse sweating
- Heart pounding or racing
-and youâve been told itâs stress, anxiety, or migraines-ask your doctor for a plasma-free metanephrine test. Donât wait. Donât accept "itâs probably nothing." This tumor is rare, but itâs curable. And the longer it goes undiagnosed, the more damage it can do to your heart, brain, and kidneys.
Find an endocrinologist who specializes in adrenal disorders. Ask about genetic testing. If surgery is recommended, go to a center that does at least 20 adrenal surgeries a year. Experience matters. Complication rates drop dramatically at high-volume centers.
This isnât about fear. Itâs about knowing. You donât have to live with unexplained, terrifying symptoms. Thereâs a name for it. Thereâs a test. And thereâs a cure.
Can pheochromocytoma be cured without surgery?
No. Surgery is the only cure. Medications like alpha-blockers can control symptoms and prepare you for surgery, but they donât remove the tumor. If you donât remove it, the hormone surges continue, and your risk of heart attack, stroke, or sudden death rises. Even if you feel fine between episodes, the tumor is still damaging your body.
Is pheochromocytoma always cancerous?
No. About 90% of pheochromocytomas are benign. But even benign ones can be deadly if they cause uncontrolled high blood pressure. The hard part is telling benign from malignant. Cancer is defined by spread-metastasis to lymph nodes, liver, bones. But tumors can look identical under a microscope. Thatâs why genetic testing and long-term follow-up are critical, even for "benign" cases.
Can pheochromocytoma come back after surgery?
Yes, in about 10% of cases. It can return in the same adrenal gland or the other one. If you have a genetic mutation like SDHB, your risk is higher-up to 30%. Thatâs why lifelong monitoring with annual blood tests and imaging is required. Even if you feel fine, you need checkups. Early detection saves lives.
What happens if I donât treat it?
Untreated pheochromocytoma can be fatal. The constant surges of adrenaline can cause heart rhythm problems, heart muscle damage, stroke, or a sudden, massive spike in blood pressure during surgery, childbirth, or even a routine medical procedure. Studies show that without treatment, 5-year survival drops below 50%. Itâs not a slow killer-itâs a ticking time bomb.
Are there any non-surgical treatments?
For benign, localized tumors, no. Surgery is the only cure. For metastatic cancer, yes-there are options like PRRT (radiation therapy targeting tumor cells), targeted drugs like Belzutifan, or chemotherapy. But these are for advanced cases. They control the disease, not cure it. Surgery remains the goal for any tumor that can be safely removed.
Why do I need to eat a high-sodium diet before surgery?
The tumor causes your blood vessels to stay tight for years. That means your body holds less fluid-your blood volume is low. If you go into surgery without enough fluid, removing the tumor can cause your blood pressure to crash dangerously. Eating salty foods and drinking 2-3 liters of water a day helps your body rebuild its fluid volume. This prevents shock during surgery.
Can children get pheochromocytoma?
Yes. While most cases occur between ages 20 and 50, children can get it too-especially if they have inherited syndromes like VHL or NF1. In kids, symptoms may be less obvious: poor growth, headaches, or high blood pressure found during a routine checkup. Any child with unexplained hypertension should be evaluated for pheochromocytoma, particularly if thereâs a family history.
Does stress cause pheochromocytoma?
No. Stress doesnât cause the tumor. But stress can trigger the symptoms. The tumor is caused by genetic mutations or random cell growth. However, emotional stress, physical exertion, or even certain medications can cause the tumor to release a flood of adrenaline, making symptoms worse. Thatâs why avoiding triggers is part of managing it before surgery.
Jamie Hooper
bro i had these symptoms for 4 years and every doc told me i was just anxious đ i even started seeing a therapist. one day i passed out after climbing stairs and my girlfriend screamed at the ER to test my metanephrines. turns out my adrenal gland was basically a tiny adrenaline bomb. surgery fixed everything. now i eat tacos like a normal human. đ