Pheochromocytoma - Experience

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What is a pheochromocytoma?

Pheochromocytomas are a type of tumor of the adrenal glands that can release high levels of epinephrine and norepinephrine. As the name implies, the ad-renal glands are located near the "renal" (kidney) area. In other words, the adrenal glands are small glands that are located near the top of the kidneys. One adrenal gland sits on top of each of the two kidneys.

Despite their small size, the adrenal glands have many functions. They are complex endocrine (hormone secreting) glands. Cells in different regions of the adrenal glands have different functions in the endocrine system. There is an area (zona fasciculata) where the cells secrete cortisol, a hormone similar to cortisone. There is another area (zona glomerulosa) where cells secrete a hormone called aldosterone which helps in water regulation.

There is yet another area, referred to as the adrenal medulla, where the cells secrete substances called catecholamines -- epinephrine, norepinephrine and dopamine. These are "flight or fight" hormones. They are responsible in part for that feeling of an "adrenaline" rush people feel when they are afraid. It is these cells that are involved in a pheochromocytoma. Basically, a pheochromocytoma is a tumor of these catecholamine-secreting cells, and that causes the clinical signs and symptoms we will discuss below. The catecholamine-secreting cells are sometimes referred to as chromaffin cells, and they are found in other areas of the body as well as in the adrenal medulla.

Sometimes, pheochromocytomas arise from chromaffin cells that are located outside of the adrenal gland. In this case, they are termed extra-adrenal pheochromocytomas or paragangliomas and are usually located in the abdomen.

Pheochromocytomas may occur in persons of any age. The peak incidence is between the third and the fifth decades of life. Pheochromocytomas are, fortunately, quite rare (2 to 8 people per million per year), and the majority of them are entirely benign.

Picture of the endocrine system
Picture of the endocrine system
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See what others are saying

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: 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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