Patient Comments: Pheochromocytoma - Symptoms and Signs

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

Comment from: Cass - the survivor!, 45-54 Female (Patient) Published: July 06

I was diagnosed with pheochromocytoma by accident in August 2010, following admission to hospital for an acute kidney infection. Prior to that I suffered with high blood pressure, sweating profusely, and diabetic, palpitations and panic attacks, constantly tired. I was sent for an ultra sound on admission for my kidney infection, and the mass was detected on my left kidney, I also went for 24 hour urine tests, MRI scan, and various blood test to confirm the diagnosis - left pheochromocytoma. I had the operation in November 2010, the operation lasted 6 hours and I stayed in hospital for 3 weeks. The mass was quite large 10cm, so I could not have key hole surgery and had attached itself to my spleen so I had to have my spleen removed as well via a large incision just below my rib cage. Due to the nature of the operation one has to be sensible and not do any heavy lifting and listen to their body, eat very well, and take gentle exercise. Unfortunately my blood pressure is still a little high so I have not got rid of all the medication yet, but I am still being monitored by the hospital. I am due to go back to the hospital to see if I still need to take diabetic medication or not, so the body is still adjusting to the removal of the adrenal gland. I am hoping that this condition will not recur, but glad that it was diagnosed when it was and that it has been removed. I am feeling alot more relaxed, but I have not returned to work yet and hoping to do so soon. At first following the operation I was feeling very vulnerable and a bit frightened of returning to work but now I feel that I am nearly ready, once my energy levels improve. This condition has made me realize how important your health is and that we should not make our lives too stressful, as having high blood pressure (220/130) as I did, is a very serious health condition, and not worth a heart attack, stroke or death!

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: Pammie, 55-64 Female (Patient) Published: October 08

I had a pheochromocytoma 12 years ago. I cannot remember how I felt before major symptoms appeared but I would suddenly get palpitations followed massive pain in my head worse than any migraine.

Comment from: Raven, 45-54 Male (Patient) Published: May 28

I was recently diagnosed with pheochromocytoma. I'm a 52-year-old male. I had a kidney infection 10 years ago and after a CT scan they found a ½-inch cyst on or near my adrenal gland. I was to follow up, and dumb me – I didn't. I look at the past and the sweating was something I never looked at seriously as I worked in a very hot environment – sometimes 120 F during the summer months. My blood pressure started spiking two years ago, but we never thought it was related to my adrenal glands. I'm on BP medication and it's working somewhat, but I will be going to have the 10-cm growth removed soon. Wish me luck and I thank my better half for mentioning it in my recent doctor's visit. If you or your spouse have lost the energy for anything or their drive for life has quickly changed, and sweat at the drop of a hat (even when sitting in a cool room), get screened by an ultrasound or CT scan.

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.

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