Patient Comments: Pheochromocytoma - Experience

Please describe your experience with pheochromocytoma.

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: rcrites220, 45-54 Female (Patient) Published: June 07

I am a 54-year-old female, with a long history with hypertension 220/150, and profuse sweating even in winter months. I experience chest pain, high heart rate, tremors with a creepy crawly feeling, severe abdominal pain, and nausea with uncontrollable vomiting. A few years ago a mass was found on my right adrenal gland; biannual lab tests are within normal ranges; however my symptoms are getting worse. I am on labetalol 300 mg four times a day, along with 100 mg Aldactone, levothyroxine 50 mcg daily, and the surgeon has decided to prescribe phenoxybenzamine 10 mg daily. The cost of the drug was USD 11,000 for a 90 day supply. The drug was not only outrageous in price, it was difficult to find. I have a headache on a daily basis with nightly insomnia, mood change and an extreme intolerance for heat. The surgeon has decided to remove the mass despite being 3 cm and not producing hormones. I wonder if it is possible for this to be a pheochromocytoma, the quality of my pain is unbearable most days. Each symptom I report gets a referral to another doctor and a new prescription, no one has put it all together, other than to ask me if I am nervous, depressed or having a panic attack.

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Comment from: Jefferson, 55-64 Female (Patient) Published: June 17

I was diagnosed with suspected pheochromocytoma. I had 2 blood tests that tested positive for the tumor however after a CT scan and a MIGB, no tumor was located. That was a few months ago. The doctor reran the plasma blood test a week ago and it is now at normal level. I am not sure what to do. The doctor has not been helpful at all.

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Comment from: Sindy, 35-44 Female (Patient) Published: January 20

I am 39 and have several symptoms since about 15 years; ranging from headaches, pains in different parts of my body, heart palpitations, sweating, abdominal pain, depression, tiredness, mood swings, dizzy spells and black outs, unexplained bruises and restlessness. I was diagnosed with different things over the years. IBS Irritable bowel syndrome), BPD (borderline personality disorder), anxiety disorder and borderline diabetic. I went to doctor last year for urine infections and by accident they found a tumor on my glad which is believed to be pheochromocytoma. This could be the answer to years of symptoms, unexplained. Unfortunately I have horseshoe kidneys (my kidneys are joined together) and I still don't know if it is cancerous. Tests are starting next week and I am scared. I live alone with my two young boys and I am hoping for the best.

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Comment from: Robin in Wyoming, 55-64 Female (Patient) Published: May 21

I was a 47 year old women with 6 children and I used to get violent headaches that made me grab my head and hope it wouldn"t explode off my shoulders. I went to one doctor who placed a Holter monitor on me and found severe changes but blew it off as menopausal symptoms and sent me on my way with Premarin. It made me feel better but again just aggravated the headaches and dizzy spells. Well, I looked out for another physician and he took on my case thinking I had an insulinoma and finding out it was not the case. He wasn"t satisfied with the answer and sent me for an ultrasound of my kidneys but before that could happen the emergency room (ER) doctor diagnosed it as possible pheochromocytoma in July. I then had many returns to the ER and I had the gambit of answers, most being I was crazy. In October however I had 3 diagnosed heart attacks in a 24 hour period of time, the last placing me on a life flight helicopter to a trauma I hospital in CCU getting an immediate angioplasty. When they came back with the diagnosis I was told you have the best looking heart I have ever seen go back to your town doctor and have him continue to look into this it"s not your heart. He did and 4 days later I received an ultrasound and they found a large sized marble lesion on the underside of my liver or on top of my adrenal gland. Not less than 5 days later I was transported to the same trauma I level hospital again with violent cardiac symptoms and after the biopsy and now the lesion being the size of a grapefruit I was diagnosed with a pheochromocytoma. Luckily I had it removed and have gone 10 years without symptoms but they have returned and now they are looking for another one. So when your doctor says you are clear, get more than one opinion, maybe 5 if need be; never accept you are crazy. Anxiety in a pheochromocytoma patient is not anxiety, it is your body telling you, you are sick.

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