I am hopeful about my upcoming surgery on February 7, 2023, during which my right adrenal gland will be removed. One adrenal gland should be enough to get by...

Fighting the Unknown

I can deeply relate to patients who spend years going from doctor to doctor with recurring, unexplained symptoms, only to be dismissed as hypochondriacs or chronic complainers.

That's what happened to me—until nearly 30 years of worsening symptoms finally led to a diagnosis in January 2023. It happened almost by accident, during an upper abdominal ultrasound prompted by years of elevated liver enzymes and high blood pressure. What followed was a whirlwind of weekly tests and scans.

Everything in my life changed. It's still unclear how advanced the disease had become, and that will be revealed a week from now—during the surgery. As things stand, they will remove at least the right adrenal gland, where an 8.8 x 7.5 cm pheochromocytoma tumor was found.

I've had symptoms and episodes for nearly 30 years, ranging from mild to extreme, even life-threatening. I'll now describe what life was like with this illness I knew nothing about.

What's Wrong with Me?

In the late 1990s, I began to suffer from gnawing headaches that woke me in the early morning hours. After waking, I couldn't fall back asleep. Over-the-counter painkillers didn't always help, so a doctor prescribed a migraine nasal spray.

However, I couldn't tolerate it. It made me nauseous, raised my heart rate, and caused pressure in my head and chest. My doctor later told me the medication contained ephedrine, likely the cause of my symptoms. I stopped taking it.

Around the same time, I began to feel flutters in my chest and occasional stabbing pain in my neck and shoulders. Sometimes the stabbing was accompanied by tingling on the left side of my face and jaw. I felt unusually tired but blamed it on lack of sleep and work stress.

Soon, I began experiencing strange nerve, muscle, and joint pain—sometimes even deep in the bones. Certain areas became sensitive to touch, and even clothing against my skin felt unbearable.

Then came the episodes. My body would suddenly feel like it was filled with lactic acid. Tremors, rapid heartbeat, shortness of breath, intense pressure in my head, and cold sweat followed. My face would turn pale—what I called the "death color."

Episodes lasted seconds to a few minutes. When they passed, I felt like I'd run a marathon. A heat wave would rush from my feet upward, as if blood was returning to my head. Afterward, I felt dazed and unreal.

Tremors became daily, especially visible in my hands. Doctors attributed it to essential tremor—possibly congenital due to my premature birth.

Hypertension and Dismissal

Doctors began paying more attention to my blood pressure, which was often alarmingly high. I underwent a cardiac stress test. No ischemia was found, but my heart rate and BP rose so dramatically that the test was stopped. I nearly lost consciousness, and my body went into lactic overload.

I started blood pressure medication, and once the right combination was found, I took it regularly. Headaches improved slightly, but other symptoms persisted. Over time, new, unexplained sensations appeared. Doctors said it was "all in my head" or minor circulatory disturbances and left it at that.

I sometimes felt like ants were crawling under my skin. I scratched myself raw. I remember the crushing fatigue. If nights weren't spent in pain, they were spent scratching. I'd wake up in bloody sheets, exhausted.

I had chronic low-grade inflammation. My body ran a fever that never spiked into a full-blown fever. Muscle pain was constant. Fatigue, irritability, and frustration ruled me. Another reason to visit the doctor.

The cycle of illness had begun—and it wouldn't let go.

Endless Illness and Pseudo-Diagnoses

By the early 2000s, I had entered a long phase of illness and recovery. I had back surgery, a hysterectomy, treatment for H. pylori, ovarian cyst removals, laparoscopy, endless tests—and a severe case of vestibular neuritis. And, of course, the mysterious attacks, which became so intense I named them "death chills."

After recovering somewhat from vestibular neuritis (which had landed me in the hospital in January 2004), I launched a catering and event business in early February. I tried to hide or tolerate the attacks as best I could. I avoided social situations where symptoms might appear or be noticed.

I ran my home, family, and business. My workdays were long. I had no spare time. I was sick, experiencing daily "death chills," and under enormous pressure. In 2009, we moved to Pernaja, Loviisa. The new home was unfinished and required extensive renovation. I did much of the work myself. This added stress and worsened my health.

In January 2011, I got divorced. The weight of responsibility fell entirely on me. It was a financial disaster. I was exhausted, both physically and mentally.

New Challenges

In November 2012, with the help of friends, I built a nearly 40-square-meter guest complex connected to my home and launched a tourism and home-stay business, along with catering and event services. My daily energy levels were already low. I had to make the debt-heavy house financially sustainable.

Before final inspection, I had to complete finishing work myself. While painting the terrace roof, my already weak right shoulder gave out—tendons tore, and I was put on the surgery waiting list. At the same time, I had unbearable sciatica. An urgent lumbar disc surgery followed.

The disc had been operated on once before in 2002. My shoulder surgery came months later. In 2018, my left shoulder was also operated on. In 2017, I was hospitalized again due to recurrent vestibular neuritis. I was also diagnosed with type 2 diabetes.

My business demanded a lot. I worked mostly alone. Sleep was minimal—sometimes nonexistent. The attacks became daily, sometimes multiple times a day. I thought: What next? Will I even see tomorrow?

A Web of Clues

A lot happened in a short time. I began wondering about cause and effect, though I might've been wrong. I told doctors about the increasingly severe attacks—so bad I feared for my life. More tests followed.

Blood tests showed elevated liver enzymes. I didn't drink alcohol, so the cause was thought to be painkillers. I wondered—could those high liver enzymes have caused the intense itching I had back in the 2000s?

One doctor casually mentioned the possibility of circulatory issues, a temporary cortisol surge, or just high blood pressure. Others suggested early menopause.

"What?! Menopause at thirty? That explains all this?"

And that was it. I searched online for answers since doctors had none. Online diagnostics were chaotic—I could have diagnosed myself with anything. I gave up.

But I noticed patterns: when I had a disc herniation, the attacks worsened. Eventually, a crushing, painful "band" around my chest appeared. Sudden, violent headaches. Severe nausea and vomiting. Whole-body tremors. Even in this state, I measured my blood pressure.

In late December 2022, during one such attack, my BP hit 299/190 with a heart rate of 179. My head felt like it would explode. I had never felt such pain. My heart and arteries were under extreme strain.

A Stroke of Luck

In November–December 2022, I was being treated for intestinal issues, recurring inflammation, high BP, and liver values. I was on two BP meds, a beta-blocker, and three diabetes meds daily. I was foggy from lack of sleep and running on empty every day.

Luckily, a new doctor took me seriously. I described the terrifying episodes. She suspected BP spikes and told me to increase beta-blockers during an episode. The next attack came—but the medication didn't help.

She referred me for an abdominal ultrasound in Porvoo to examine my liver and check other organs. During the scan, the doctor began asking specific questions—and I answered yes to all. I had a feeling: something had finally been found.

The ultrasound revealed a large tumor in my right adrenal gland. That started a flood of tests, scans, and bloodwork. CT scans confirmed the diagnosis: pheochromocytoma.

(Extensive quoted medical material to follow.)

Pheochromocytoma – A Silent but Dangerous Disease

Based on the Medical Journal Duodecim (2013;129(22):2375–8)
By Johanna Paronen, Mika Väisänen & Helena Leijon

Case Report:
Pheochromocytoma is a tumor arising from the chromaffin cells of the adrenal medulla, which secretes adrenaline and noradrenaline. It is rare, and because its symptoms can closely resemble other conditions, diagnosis is often delayed. Episodic symptoms are characteristic of pheochromocytoma.
Surgery usually provides a cure, but without treatment, it can lead to sudden death or spread in cases where the tumor behaves malignantly. Preoperative treatment with alpha-blockers is essential. Due to the risks, surgeries should be centralized in specialized endocrine surgery units.
(End of citation)

If you or someone you know is experiencing symptoms of pheochromocytoma, seek medical attention immediately.

Typical symptoms include:

• Sudden, recurring high blood pressure episodes

• Palpitations / rapid heartbeat

• Sweating / cold sweat

• Headache

• Tremors

• Chest pain or pressure

• Nausea

• Weakness

• Abdominal pain

• Pale skin

• Shortness of breath

• A sense of internal pressure or intense muscle fatigue ("lactic acid burn")

Pheochromocytoma cannot be prevented, but genetic testing may be useful for individuals with a family history of tumors to enable early detection and prevent metastasis.

Complications

Most complications arise from severe high blood pressure, including:

• Acute hypertensive crisis

• Cardiovascular disease

• Kidney failure

• Acute respiratory distress

• Optic nerve damage

What Is Pheochromocytoma?

Medical Reference: Duodecim, July 23, 2022 — Dr. Pertti Mustajoki, Internal Medicine

Pheochromocytoma is a rare adrenal gland disorder. The adrenal glands, located above the kidneys, produce essential hormones. The medulla (inner part) produces adrenaline and noradrenaline — the body's primary stress hormones. A tumor developing in these cells is called pheochromocytoma.

The name comes from Greek and refers to the tumor's tendency to stain brown under the microscope — "a cluster of brown-staining cells." The tumor releases large amounts of adrenaline and noradrenaline, which cause the symptoms.

In most cases, the tumor is benign and does not spread, but in rare cases, it may behave like a cancer and form metastases.

Prevalence and Genetics

Pheochromocytoma is rare: in Finland, only about ten new cases are diagnosed annually. Most patients are aged 30–40. Some cases are linked to hereditary conditions, such as MEN (Multiple Endocrine Neoplasia) syndromes.

Symptoms

Typical symptoms include episodic headache, sweating, and palpitations. Chest pressure is also common.
During attacks, blood pressure spikes dramatically. Episodes occur without warning or can be triggered by physical compression of abdominal organs — for example, when bending over.

Sometimes, the symptoms are vague or nonexistent. Blood pressure may be elevated even without episodes. Occasionally, the tumor is found incidentally during imaging for unrelated reasons.

Diagnosis

Once suspected, pheochromocytoma can be diagnosed through urine tests, which detect high levels of adrenaline and noradrenaline metabolites. The tumor's location is confirmed via CT or MRI scans.

Treatment

The primary treatment is surgical removal of the tumor. Before surgery, blood pressure is stabilized with medications (including alpha-blockers) over several weeks.
Surgery is performed at university hospitals. Most patients are cured entirely and freed from their symptoms.

If the tumor is malignant, additional treatments are necessary, and a full recovery may not always be possible.

Prevention

The exact cause of pheochromocytoma is unknown, and there is currently no known way to prevent it.
However, hereditary cancer syndromes may predispose individuals — so early screening of family members can be helpful.

Looking Ahead — Nervous, Yet Hopeful

Even though the medical classification of pheochromocytoma doesn't always promise the best outcome post-surgery — as only during the operation can we determine whether the tumor is benign or malignant, or whether it's attached to the liver or nearby tissue invisible to scans — I feel relieved.

As insidious and destructive as this disease has been, it's finally been identified and named. I have finally given a face to this intruder.

This is not a typical "folk disease" but a rare condition that's incredibly hard to diagnose based on symptoms alone. But I'm grateful that the cause of my years of suffering has finally been found.

My episodes had become dangerously severe — doctors and nurses were shocked by my blood pressure readings and the strength of my symptoms. They told me I had stood face-to-face with death more than once.

Surgery Ahead...

I'm currently on an alpha-blocker course, which aims to minimize the risk of blood pressure spikes during surgery. Unfortunately, the side effects are unpleasant, and I've had to stop all my other blood pressure medications because of this.

Just one more week to go. When I finally drift off into sleep on the operating table, I hope the skilled professionals performing the surgery will succeed without complications — and that my recovery will be swift.

For now, I'm pausing everything else to focus on myself and my health. I'm learning to live in the moment and giving myself credit for enduring this long. Hope remains.

A surgeon from the team contacted me, and we discussed possible intraoperative complications. Every surgery under anesthesia carries risk — but pheochromocytoma increases that risk significantly.

There's hope that I might be able to stop one of my blood pressure medications entirely after surgery — which would be amazing. But more than anything, I dream of being free of these symptoms once and for all.

What would it feel like to live a life without constant pain, without terrifying episodes, and maybe even in reasonable health?

I'll return to this blog space again once I've come through this challenge — when I'm well enough to sit at my keyboard and share an update 

With the warmth of my heart,
– Roya-