Patient Comments: Pheochromocytoma - Symptoms and Signs

Question:What symptoms and signs did you experience with your pheochromocytoma?

Comment from: Thankful 2011, 45-54 Female (Patient) Published: April 25

My pheochromocytoma symptoms began in 2001 after my mother suffered a stroke. My symptoms were waves. I am a pheo survivor. Suddenly, unannounced, I would feel weak, turn gray, have a massive headache, and begin to sweat. It only lasted minutes. My wonderful sons would assist me; one putting pressure on my head because it felt as if it was going to explode, and the other with some ice cold product on the top of my head and back of my neck. I have never been diagnosed with high blood pressure and was constantly cold. I gained about 50 pounds over the four years before my diagnosis. I had an episode in front of the doctor who was trying to tell me it was a panic attack or anxiety. I changed doctors. During my time ill, I also developed RA. I was diagnosed in January 2005 and within the month, all tests were done and surgery was done. I am well and no more RA meds.

Comment from: Mazza, 55-64 Female (Patient) Published: May 22

I awoke five weeks ago with a severe headache and bloodshot eyes. Later that day, my blood pressure was 179/119. I have been treated for hypothyroidism with thyroxine for 15 years. I've have had a fair bit of work-related stress. Since that episode, I have continued to have nightly tremors; nausea; pins and needles in my arms and hands; headaches; ringing in my ears; along with burning pain in my left arm, neck and the tops of my legs. My blood pressure has been 150/88. I've had a battery of scans and blood tests that are all OK, except my DHEA was 6.2. I have stopped my thyroxine because it was making me sicker and pushing up my blood pressure. I have lost 5 kgs (about 11 lbs) and can't work anymore as a midwife. I have seen a specialist.

Comment from: chacha, 55-64 Female (Patient) Published: April 15

For three years, I had episodes of weakness, fainting, and some nausea. At the start, I was having episodes infrequently. They would last a few minutes and I would feel weak after that, and then be back to normal. I went to three doctors. Twice, I was given a heart monitor. After moving out of state, I found a cardiologist who put me on a heart monitor (for the third time). Episodes increased after readings from my heart monitor. The cardiologist determined I needed a pacemaker. I did not have abnormal blood pressure unless it was during the episodes. Less than a week after the pacemaker, I began having more episodes. One lasted for 10 hours. I was then sent to an endocrinologist, who ran a 24-hour urine test. Less than a week later, I was admitted to the hospital and a CT scan was given. That's when they found the tumor on my adrenal gland. Two days later it was removed. I have not had any episodes since then. It was a total of five hospital visits and two surgeries within two weeks, after three years of symptoms. No medication was prescribed, but I am feeling fatigued and plan on following-up with my doctor.

Comment from: Mberron, 55-64 Male (Patient) Published: January 03

I had experienced palpitations after exercise along with severe headaches and a lot of sweating. I have had anxiety for years but after an extreme attack after hitting golf balls, I decided to see a heart specialist. They did an echoCardiagram and found what they thought eas blood clot. I went to the hospital and they did a CAT scan where they found it was actually a tumor. But the tumor went from my adrenal gland up the inner vena cava and into my right atrium. After further blood and urine tests, it was found to be a pheo. A PET scan did not show metaststatis, so I was lucky. The tumor has been removed and was found to be malignant. I now have tests every six months to check for reoccurrence.

Comment from: lovelife, Female (Patient) Published: August 14

I had a colonoscopy on June 11, 2008. When I woke up in recovery I asked the nurse if I could go to the toilet. All I remember is walking towards the door and placing my hand to open it when I suffered a severe headache and collapsed to the floor. I suffered a subarachnoid hemorrhage. I spent 7 weeks in the hospital partly in intensive care as my blood pressure was 240/150, I had elevated plasma, metanephrines, and I was told I had a pheochromocytoma. After many scans I was told I was cleared, a tumor was never found. Yesterday I saw my specialist as I am due for another colonoscopy. I was told the pheochromocytoma is still in my body and another colonoscopy could kill me. After this incident I lost feeling of my left side, could not lift my arm, and still have weakness. Now I am wondering if this pheochromocytoma will ever show up. But I am having scans and necessary tests to prevent this from happening to me again.

Comment from: 55-64 Male Published: August 14

My symptoms where high blood pressure, 200/100, headaches, kidney failure, no blood pressure medication helped and I was on experimental BP meds under care of a kidney specialist. Nothing helped. I was diagnosed with pheochromocytoma, which was removed in 1977. I am a Vietnam veteran trying to connect with other Vietnam veterans as to its connection to agent orange. At this point there is no data I know of to make the connection. My surgeon in 1977 told me he had no doubt there was a connection to agent orange, but at that time there was no data to make the confirmation as there is not now.

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Pheochromocytoma - Experience Question: Please describe your experience with pheochromocytoma.

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