Patient Comments: Pheochromocytoma - Symptoms and Signs

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

Comment from: Sally, 65-74 Female (Patient) Published: December 05

I have been tested for pheochromocytoma 8 years ago, i.e., only a urinary collection that didn't show anything. For a few years there had been an on and off occasion where I experienced the symptoms but lately it is happening almost once or twice a week. I am not anxious and very relaxed and then suddenly I start feeling bad, my pulse rises and if I measure my blood pressure it is way above 220/118. I have headache and start shivering. I immediately take a Natrilix (an additional pill the doctor gave me) and in about an hours' time everything is okay. Tuesday the same thing happened and after the Natrilix my blood pressure went back to normal but within the next hour I had an incident again and as I couldn't take any more Natrilix I went to the outpatients' clinic. By the time, 2 hours later, when they attended to me everything was back to normal. I just can't handle it anymore that no one understands that it is an incident that occurs and if it has subsided I am as healthy as can be.

Comment from: Steve, 19-24 Male (Patient) Published: November 18

I am 60 years of age now (2013). I first was diagnosed with high blood pressure when I was entering high school. I don't know the actual blood pressure from that time, but my pediatrician let it go until I graduated from high school. I changed doctors then, and got an internist who did the 24 hour urine tests. There was evidence of elevated noradrenaline, leading to the first suspicion of pheochromocytoma. I did have terrible episodes of sweating and a seriously impacted adolescence because of it), and I might have had symptomatic headaches that I didn't recognize as such. However, the internist put me on old-school high blood pressure medications (NaQua) and let me go off to college for a year to be re-examined after the school term. In those days there was no MRI, CAT scan, etc., so I had an arteriogram which revealed nothing much (1972), maybe a shadow on one of my adrenal glands. This led to exploratory abdominal surgery during which the surgeons found and excised a pheochromocytoma tumor the size of a half dollar on the lower end of my aorta where it bifurcates. However my blood pressure did not stabilize, and further urine tests still showed elevated noradrenaline, causing the doctors to conclude that I had a second pheochromocytoma but not on my adrenals. After another arteriogram and a genogram, a duck-egg sized mass was discovered on my sympathetic nervous system behind my clavicle and removed. Neither of these pheochromocytomas were malignant. At the time I was told that I was the first pheochromocytoma patient known to have 2 of them, neither of which were on the adrenals. Since then I've lived a normal life, mostly without medications, with periods of high activity. I do have Horner's Syndrome as a result of the surgery, and for several years following the surgery I experienced a heightened histaminic response (severe bee sting and poison ivy reaction, trip to the emergency room for a fly bite) but I'm normal in that regard now. Today I sweat (high normal) and high blood pressure has returned, but it seems like the kind many 60 year olds get and it is controlled by medications. I did a 24 hour urine test at age 55 which gave no indicators.

Comment from: 43 woman survivor, 35-44 Female (Patient) Published: May 29

I had Pheo in the year of 2010 on the right adrenal gland. I thought I was having a stroke when I first felt the symptoms. I had a severe headache on the right side of my head that went down the side of my neck to my stomach. I thought I was going to throw up. I went to doctor and he sent me to a nerve specialist at first. He ordered an ultrasound which noted a 7 cm tumor, the size of a baseball. It was causing me to have heart palpitations and those weird spells where I would shake and feel headache pain and my stomach would feel nauseated. My family doctor sent me to a hormone specialist who diagnosed me with Pheochromacytoma and started the process. He was great. I felt better after surgery. It took me a little longer to get my energy back but I got through it okay.

Comment from: JigokuSenshi, 19-24 Male (Patient) Published: March 30

I had severe headaches and blood pressure problems for years. It started when I was very young and was not that bad for a long time, but we found out the cause at age 14. I went in to get checked up and had pneumonia, but my blood pressure was unusually high. No scans (MRI, CT scan, chemical, etc) other than a simple ultrasound found a golf sized tumor inside of my bladder. I had surgery and they were able to take out the main tumor, but they found out it was malignant. I'm 22 and again still suffering from horrible headaches. I got really sick recently and had to go to the hospital. My blood pressure was around 200 over 150 or something like that. It took them several days to get it under control. They wanted to do a ton of tests again, but I told them I only wanted to get another ultrasound. They again found another mass around my bladder area. They are not sure if it's a tumor yet, but it very well could be. Not sure if I will have to get surgery again. We are trying to figure stuff out. No doctors really now how to treat me or other patients with pheochromocytoma since it's so rare and doctors have no experience with it. Hope this helps some other people.

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