Patient Comments: Pheochromocytoma - Experience

Please describe your experience with pheochromocytoma.

Comment from: Loy211, 35-44 Female (Patient) Published: August 11

I began reading these posts yesterday. I believe I might have a pheochromocytoma. First and foremost, my mother had it and had it resected. My symptoms began last year or earlier, to be honest. I have had migraines (or what I believed to be migraines) for 10 years. They started around the time I started oral contraceptives (OCP) so thought it was related. The headaches weren't that severe and I could function so I stayed on the OCPs. Recently I have had persistent insomnia despite multiple OTC medicines and now I am having anxiety. My blood pressure is another major issue. It has been creeping up over the past several years. Sometimes it's totally normal and then sporadically jumps to numbers as high as 200s/100s. By the way, for this reason, I came off OCPs and now have the copper IUD in (no exogenous hormones). I am having the 24 hour urine metanephrine/catecholamine test next week which is pretty sensitive at detecting pheochromocytoma. I guess if it's positive, the next step is an MRI. If it is a pheochromocytoma, I would actually be relieved (as long as it's a non-cancerous kind) to know that there actually is a reason behind my weird symptoms. I can't wait to be tested! Good luck to everyone.

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Comment from: kieranmcgill, 55-64 Male (Patient) Published: June 13

It seems that they have finally found my pheochromocytoma. Yeah, it's a relief, but what you need to know is how. They have just done a PET DOTATATE scan. It cost me AUD 300, because it wasn't covered by Medicare in Australia. I don't know why. It was important, and is going to save the Australian health system a fortune for inappropriate treatment. The PET scan says pheochromocytoma, and I have just had a biopsy for confirmation. But, my symptoms weren't classic, and I have spent a decade, actually 15 years, trying to tell doctors something was wrong. Which wasn't the doctor's fault. The urine test didn't find any indication, and I didn't have the classic symptoms, I think mine has been producing ACTH, and I have had hypotensive crises, rather than hyper. Anyway, if you think you have pheochromocytoma, the solution looks to be a PET DOTATATE scan. I was also lucky with a clever endocrinologist, who suspected pheochromocytoma, and was determined to find it, and didn't care how much I had to pay.

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Comment from: Nurse, 35-44 Male (Caregiver) Published: February 24

I am a nurse in a recovery room. Just to share my experience, so those of you who are sitting on the fence about having treatment for pheochromocytoma obtain the help you need. We had a male patient go in for routine hernia surgery. He had a history of anxiety, feelings of impending doom and sweating. His surgery was successful, but in the operation room he developed a fast heart rate and serious arrhythmias. In recovery room he was ashen, profusely diaphoretic, with severe hypertension and arrhythmias. His heart stopped, he was resuscitated, but later that day died in the ICU. An autopsy that same day showed a pheochromocytoma. The pressure on his abdomen caused it to secrete catecholamines, resulting in the symptoms he experienced. Best of luck to those of you who have experienced this terrifying disorder.

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Comment from: Elizabeth, 45-54 Female (Patient) Published: April 12

I am 53 years old. For 13 years I have suffered from panic attacks, palpitations, nausea, dizziness, and high and low blood pressure with spikes 280/120 and down to 70/50. I was told twice I had diabetes and in the beginning I had violent headaches where I thought my head was going to explode. Initially doctors thought I was having a stroke or just too stressed. The triggers for my episodes were heat (hot drink, hot shower, hot in bed), bending down (which I now understand was squashing the tumor), and stress. I was put under the care of a cardiologist. I had a cardiac monitor implanted for 3 months, stress tests, heart ultrasounds, heart scans, etc., but no real answer and my episodes became more frequent and more severe. On the 1st of March 2016 I woke with my heart fluttering and I was finding it difficult to breathe. My husband drove me to the hospital and they found that I had pulmonary edema with my oxygen levels down to 78 percent. The following day I was flown to Melbourne for an angiogram. It showed that my heart was perfect. My cardiologist then ordered an ultrasound of my kidneys to check my arteries and they found it; a 9 cm pheochromocytoma which they described as a grapefruit. I then had blood tests, two 24 hour urine collections, a CT scan, MIBG (metaiodobenzylguanidine) test and started taking phenoxybenzamine tablets for a fortnight. I was told that my levels were 12 times higher than a normal person. After the two weeks passed, I had it removed by a skilled surgeon who was able to do it by keyhole surgery. It is now two weeks since the surgery and I am still a little bit sore, but so happy. I have a new life!

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