Patient Comments: Pheochromocytoma - Experience

Please describe your experience with pheochromocytoma.

Comment from: Ashlee, 19-24 Female (Patient) Published: November 24

I am a 24-year-old female and have been diagnosed with the extremely rare type of pheochromocytoma, the dopamine secreting tumor. Everyone kept telling me it was anxiety; I thought I was losing my mind. Finally, I got a 24-hour UA test and saw the extreme elevated levels of dopamine. I'm sure that I will have to have the tumor removed. Hopefully, when it's gone, I will be able to live again without my heart feeling as if it's going to explode.

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Comment from: Joe V., 45-54 Male (Patient) Published: November 24

I just found out I have a pheochromocytoma after five years, seven different doctors, and a bushel basket of garbage medicine that's been killing me! I have high blood pressure, diabetes that is uncontrollable by insulin, and sweating episodes. I found this out on my own through the Internet, and I insisted on adrenal urine tests. My dumb endocrinologist didn't even want to give me the test. I finally got a surgeon who understands this disease, and it's coming out tomorrow. He claims my blood pressure will be normal and my diabetes should go away, or at least be controllable after the surgery.

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Comment from: mmandavis, 65-74 Female (Caregiver) Published: June 24

My mother is planning on having surgery to remove her adrenal gland due to a diagnosis of pheochromocytoma. She is interested in knowing what the after effects of removal will be. Will her anxiety level be reduced? Will her energy level be affected? Will her ability to sleep be improved? Will her blood pressure be reduced? Will she continue to experience panic disorders? Her experience has been what she believes is probably over 30 years of acute anxiety, insomnia, panic attacks, stomach gas, and instant bloating.

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Comment from: tdrake, 55-64 Female (Patient) Published: June 03

I have had panic attacks for years. In the last year and more in last three months I have had severe palpations, was tired, diarrhea, headaches, some that I never had before. Hot and cold sweats, etc. they are checking for this problem, but the lab, is behind. I know something is wrong. I have been too sick (no panic attacks for sure). I need advice because one test came back with showing something in my blood. I did a 24 hour urine, and a new test, but do not think they know what or how to deal with this.

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Comment from: william, 35-44 Male (Patient) Published: March 16

I was screaming with a sore head. I lost weight, couldn't sleep, I was sweating like a madman, week as a kitten. I couldn't work. I thought that my heart was going to burst. I didn't want to talk to anyone. I thought I was going crazy. It took 4 years for me to find out I had a pheo. All it took was a 24 hour urine test to find out I had it. I got another one last year and had it removed. I am still getting treatment for it as we speak.

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Comment from: jimp, 35-44 Male (Patient) Published: March 16

Two weeks ago I had an adrenalectomy to remove a right-sided pheo. Incidentally, it was discovered accidentally whilst I was being treated for severe pneumonia. Once I was diagnosed it made perfect sense because I had had all of the symptoms for years and had been to the doctors just this year about palpitations and night sweats. All went well, but I really feel like there has been a lack of specific information from the hospital. Of course we did our research on the Internet. As did the medical team (they said they had Googled it the day before my operation). My biggest gripe is that I wanted more detail about how the operation went and what to expect next. I have a follow up consultation in about 6 weeks, but I still have abdominal pain, tender skin and numbness which I am presuming is normal. I don't really know how "active" to be just yet, which is a little unsettling. I have also read here that there is a 10% chance of recurrence, but as yet I don't know what after care to expect. I am a 43 year old male.

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Comment from: future survivor, 25-34 Female (Patient) Published: March 13

I was diagnosed with a pheochromocytoma 3 years ago. I had all the symptoms and the doctors couldn't figure it out. I suffered for over a year before I got sent to emergency for high blood pressure after a routine doctors visit. I had surgery to remove it and was in the hospital for 6 weeks. My symptoms went away after but unfortunately I have the malignant type and the tumors came back and spread. I'm going for another surgery and am on medication. I just wish it was found sooner but have been closely monitored since the first diagnosis.

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