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" 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, but approximately 10% occur in children. Pheochromocytomas are, fortunately, quite rare (only about 800 new cases are diagnosed per year in the US) and the majority of them are entirely benign. Only about 10% of pheochromocytomas are malignant.
See what others are saying
I am a female who was diagnosed with a pheo in September. My blood pressure was 240/180. After the blood and 24 hour urine tests, we started searching for the tumor site. We are still looking! It seems I have a very, very rare 'functioning/non-functioning' pheo that only produces lots of hormones part of the time. All the fluctuations in blood pressure and heart rate have damaged my heart. I had to have a pacemaker put in. The last blood tests showed hormone levels 5-10 times higher than normal. The trick was finding a doctor who would listen to me telling him that my body was 'sick' only part of the time when we tested when I was 'sick' the hormones are very high. When I am not 'sick', the hormone levels are near normal, but still higher than they should be. We are now waiting for my body to be 'sick' again so we can run a MIBG test and, hopefully, locate the tumor and remove it. I have been sick for over 7 years, unable to work and on disability. I live in Houston and even the Medical Center can't figure this out! Again, the trick was getting a doctor who would listen to me and test at the right time!
Yesterday, our 15-year-old daughter had the urine tests for pheochromocytoma. She has many of the symptoms. Over the past two years, she has seen many doctors with no answers or with the assumption that she has anxiety. Her worst bout was just a month ago. While my daughter was home with a headache, she complained of chest pain. Then, she said she had no feeling in her hands. Soon, her pulse skyrocketed, and she began to lose consciousness. We called 911. Her pulse and blood pressure were high. The ER doctors couldn't figure it out; they thought it was a panic attack. Her high blood pressure and pulse rate continued. Then, she had two more episodes in the hospital. After the episodes, she had no recollection of the experiences, and her general cognitive functions were that of a 4 year old. (Now, her memory is perfect except she does not recall a thing from the three-day ordeal in the hospital.) She also has had headaches for two years. We saw a great neurologist yesterday who is running a brain MRI and EEG. He also says that she has the symptoms of pheochromocytoma.
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