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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Comment from: Shandigirl, 35-44 Female (Patient) Published: July 31

I have been seeing my cardiologist, psychiatrist and neurologist. My pulse is never below 100 and spikes to 170, my blood pressure is high but not all the time. All that was done was changing my blood pressure prescription so I patient advocated and got a 2nd opinion who sent me to an endocrinologist. I am 5'1' and went from 106 to 85 lb. in 3 months. Her initial thoughts are pheochromocytoma of which initial labs have pointed to. I just did the 24 hour urine test with results pending. My symptoms include palpitations, rapid heart rate, abdominal pain, chest pain, extreme fatigue, shortness of breath, decrease in urine output, slightly elevated blood sugar, 2 plus X epinephrine values, irritability, nervousness and anxiety, low heat tolerance, severe headaches, sweating, weight loss (21 lb. in 3 months, 1/4 of initial weight), hand tremors, high blood pressure, and insomnia. I feel like I am on a mystery diagnosis and just want an answer, whatever it may be. I will probably lose my job over this as FMLA medical leave has run out.

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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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