Patient Comments: Pheochromocytoma - Experience

Please describe your experience with pheochromocytoma.

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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Comment from: JD, 55-64 Female (Patient) Published: March 01

I was diagnosed with a pheochromocytoma this year in 2016, of size 2.9 cm in my adrenal gland. My symptoms were high blood pressure 195/106, 224/106 range usually in the morning hours. When my blood pressure spiked high my heart would go into an irregular heartbeat tachycardia and I would get a pretty good headache. I thought for sure I was going to have a stroke or heart attack. I was seeing an endocrinologist for hyperthyroidism and he suspected my condition. I had my adrenal gland removed 2 weeks ago. The most noticeable improvement in my health is the stress in my body. I no long have tension in my neck. Prior to the surgery I had so much tension in my neck I could barely move my neck from left to right without it being painful. I'm looking forward to my follow up visit for pathology results. I'm very fortunate to have my endocrinologist, I feel he saved my life.

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Comment from: pheo1, 45-54 Male (Patient) Published: February 17

I had pheochromocytoma diagnosed at age 50. Prior to the diagnosis I had what I thought were panic attacks and some massive night sweats. The diagnosis was a byproduct of an emergency room visit for a spontaneous spleen rupture. This manifested itself as severe abdominal pain. When I made it to the emergency room my blood pressure was 60/0. My surgeon suspected that the spleen rupture was a side effect of the pheochromocytoma and there are a few medical journal articles that show a correlation between the two. The CAT scan for the emergency surgery showed the pheochromocytoma and after I recovered from that I went back for another surgery to remove the tumor.

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Comment from: 35-44 Male (Patient) Published: August 25

Five years ago when I was 36, I developed a severe headache that lasted a couple days. I awoke in the middle of the night with tachycardia. I first went to the emergency room and was told my potassium was low. A week later I was admitted with constant tachycardia. The cardiologist suspected adrenal problem. I had 7 days of test. MRI revealed a small adrenal tumor. Endocrinologist dismissed it as incidental finding since supporting test came back normal. I was sent home with a beta blocker. Over the last five years I've had episodes of tachycardia and blood pressure jumps to 150/100. A couple weeks ago I was awake all night with leg aches, flushing, an internal tremor sensation, and anxiety. I felt like I was on an IV drip of adrenaline. I took a 24 hour urine test and my levels were 3 to 4 times elevated. I had to be weaned off the beta blocker to do further lab work to confirm pheochromocytoma. I had MRI 2 days ago. Now I'm waiting. I think the beta blocker has been masking the problem.

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