Patient Comments: Pheochromocytoma - Experience

Please describe your experience with pheochromocytoma.

Comment from: kbd6930, 35-44 Male (Patient) Published: February 02

I found out I had pheochromocytoma after 10 months. My first primary care physician couldn't understand why my heart rate was so high. To my frustration, he would always say, "I don't know?" When I also complained of my other symptom of headaches, I was referred to a neurologist. He took a CAT scan of my head, and he could not find anything and didn't know why this was happening. I was then referred to an ear, nose, and throat specialist. He also could not find what was going on. So finally, I changed my doctor and hospital to another primary care physician. At first, he was puzzled why my heart rate was so high. So finally he gave me an MRI of my entire body, and that's when they found the tumor. My adrenal gland was removed and my symptoms have gone away. Not all doctors are familiar with this disease, so if you have any of these symptoms, demand that your doctor give you an MRI of your entire body.

Was this comment helpful?Yes
Comment from: 19-24 Male (Patient) Published: February 02

I was diagnosed with pheochromocytoma as a 10-year-old boy. I had suffered agonizing headaches for a year or so previous to that, and I couldn't stop sweating. It was nearly too late for me, and I ended up in a coma for a short while and lost the use of the left side of my body for a while too. I was certainly unlucky as at the same time I suffered from encephalitis as well (swelling of the brain), and I was seriously ill. I had my kidney removed at 14, and that was the end of it. I was only the second person of that age to have the illness, which is why it took doctors so long to find out what was up. I nearly died. Anybody who thinks they may have this should go get it checked ASAP.

Was this comment helpful?Yes
Comment from: Doris, 45-54 Female (Patient) Published: February 02

I was just diagnosed with pheochromocytoma. It was discovered when I went into surgery to remove what the doctors thought was a fibroid tumor. Well, after seven hours of surgery, the doctors told me that I had this disease. I knew something was wrong with me. I am a marathon runner, and I am in pretty good shape, but I also had diabetes, heart palpatations, and very high blood pressure. For years the doctor told me that I was having panic attacks because my heart was fine. I was sooooo scared of dying. I haven't started treatment, but the surgeon did tell me that I still have cancer cells.

Was this comment helpful?Yes
Comment from: Matt, 25-34 Male (Patient) Published: February 02

In July of 2005, I was admitted into the ICU for extremely high blood pressure (250/170). I went in for a headache that wouldn't go away. After three years of testing, the last test we did was for pheochromocytoma. The levels were through the roof. However, it could not be found where they would normally find it. I have now have to do another scan to locate it and remove it. I have been on several different types of blood pressure medications, and none of them helped. I hope that once it is found and removed my blood pressure will go back to normal, and I can live a healthy life again.

Was this comment helpful?Yes
Comment from: Sheels, 45-54 Female (Patient) Published: November 24

I had back pain over my left kidney, for which I sought treatment. I found out I had pheochromocytoma, which was surgically removed two years ago. It was benign, and my pain was caused by the tumor being attached to tissue at my spinal column, which went away after surgery. I have had no symptoms since. It was very scary to be diagnosed with this condition, but in reality, it was not as worrying as I had let myself believe. It is very treatable.

Was this comment helpful?Yes
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.

Was this comment helpful?Yes
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.

Was this comment helpful?Yes

Patient Comments

Viewers share their comments

Pheochromocytoma - Symptoms and Signs Question: What symptoms and signs did you experience with your pheochromocytoma?

Patient Comments are not a substitute for professional medical advice, diagnosis, or treatment. Never delay or disregard seeking professional medical advice from your physician or other qualified health provider because of something you have read on MedicineNet. The opinions expressed in the comments section are of the author and the author alone. MedicineNet does not endorse any specific product, service or treatment.

Alert If you think you have a medical emergency, call your doctor or 911 immediately.

Report Problems to the Food and Drug Administration

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.