Patient Comments: Pheochromocytoma - Experience

Please describe your experience with pheochromocytoma.

Comment from: Robin in Wyoming, 55-64 Female (Patient) Published: May 21

I was a 47 year old women with 6 children and I used to get violent headaches that made me grab my head and hope it wouldn"t explode off my shoulders. I went to one doctor who placed a Holter monitor on me and found severe changes but blew it off as menopausal symptoms and sent me on my way with Premarin. It made me feel better but again just aggravated the headaches and dizzy spells. Well, I looked out for another physician and he took on my case thinking I had an insulinoma and finding out it was not the case. He wasn"t satisfied with the answer and sent me for an ultrasound of my kidneys but before that could happen the emergency room (ER) doctor diagnosed it as possible pheochromocytoma in July. I then had many returns to the ER and I had the gambit of answers, most being I was crazy. In October however I had 3 diagnosed heart attacks in a 24 hour period of time, the last placing me on a life flight helicopter to a trauma I hospital in CCU getting an immediate angioplasty. When they came back with the diagnosis I was told you have the best looking heart I have ever seen go back to your town doctor and have him continue to look into this it"s not your heart. He did and 4 days later I received an ultrasound and they found a large sized marble lesion on the underside of my liver or on top of my adrenal gland. Not less than 5 days later I was transported to the same trauma I level hospital again with violent cardiac symptoms and after the biopsy and now the lesion being the size of a grapefruit I was diagnosed with a pheochromocytoma. Luckily I had it removed and have gone 10 years without symptoms but they have returned and now they are looking for another one. So when your doctor says you are clear, get more than one opinion, maybe 5 if need be; never accept you are crazy. Anxiety in a pheochromocytoma patient is not anxiety, it is your body telling you, you are sick.

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Comment from: Jeanne, 65-74 Female (Patient) Published: March 06

I am 72 years old and I had a pheochromocytoma when I was 17 years old in 1959. I had high blood pressure which limited my normal activities as I would get dizzy with any exertion. I also had extreme sweating. A urinalysis showed sugar in my urine. My doctor thought I was diabetic and started me on insulin shots, but I did not respond properly. Fortunately the doctor knew he needed help with a diagnosis and sent me to a teaching hospital where they made the diagnosis. My right adrenal gland was removed and I had a blood clot in my left arm after surgery which had to be removed in another lengthy surgery. For those of you with pheochromocytoma now the methods for bringing you back to health are a lot more user friendly! Good luck to you all.

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Comment from: tanner'smom, 45-54 Female (Patient) Published: December 16

Over the past few years, I have had many "attacks". They begin in the morning when I would go to the bathroom for my bowel movement. I would get terribly nauseous and begin vomiting every 15 to 20 minutes, sweating so much I would slide around on the toilet seat! In November 2013, I had a terrible spell, had my husband call 911. My blood pressure was 210/160, my heart rate was jumping around like crazy. I was admitted and spent 5 days in the ICU. For 60 hours I sweated like I had a bucket of water pouring over my head. I had a "slight" heart attack while in the ICU. While running a scan for blood clots, they found a mass on my adrenal gland. I just got the results back today from my 2nd 24-hour urine test, and the results indicate a pheochromocytoma. Now I'm waiting for appointment with an endocrinologist. I have to admit I am pretty scared.

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Comment from: Jacque, 25-34 Female (Patient) Published: October 22

I'm 30, overweight, fat face neck and abdomen. I have had high blood pressure since I was 19. I was on propranolol (a beta blocker) since then and it just didn't seem to be working well. I went to my doctor and told him it needed to be adjusted so he added a water pill. A month later after starting to take the new medication I was lying in bed having a terrible migraine and heart palpitations. I went to the emergency room like so many times before and my blood pressure was something like 205/ 160 my pulse was racing and the emergency room doctors just kept telling me I was having a panic attack. After 12 hours in the emergency room they decided to admit me and call down a doctor to ok my being admitted. I have a family history of Von Hippel-Lindau (VHL) disease and had googled my symptoms for months. So the doctor they sent down was going over my chart with the nurse and I could hear them. I yelled out "I think I know what's wrong with me." They came in and asked what I thought it was and I told them about the VHL and said I think it's a pheochromocytoma. "I doubt that, it's so rare" said the doctor. Then she got called away to deliver someone's baby. That might have saved my life. Since she got called away they sent down her attending boss. I told her the same thing. She agreed the symptoms fit and admitted me and started running a barrage of tests. Blood, 24 hour urine, CT, MRI, MIBG, ultrasound, echo, you name it. A day or so later she came in and said "you were right! It's a pheochromocytoma!" I have probably had it for 10 years. It's rather large on my right adrenal. I'm scheduled for surgery on October 28th 2013, they are going to try and do it laparoscopically but it may need to be an open surgery due to size. I've never been so happy/vindicated to be told something really was wrong and I wasn't having a panic attack!!

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