Patient Comments: Pheochromocytoma - Experience

Please describe your experience with pheochromocytoma.

Comment from: Cathleen, 13-18 Female (Caregiver) Published: July 06

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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Comment from: tia, 35-44 Female (Patient) Published: May 09

I think I have pheochromocytoma. My 24 hour urine test came back 847. I feel like a diabetic but I'm not.

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Comment from: SIXTEEN HUNDRED, 45-54 Male (Patient) Published: May 07

I was diagnosed with multiple endocrine neoplasia (MEN) 2A. I've had two rounds of bilateral adrenalectomies. I also had thyroid, and 2 parathyroids removed. Listen up folks. Seek professional help. As soon as possible! Pheochromocytoma can change your life in a heartbeat!

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Comment from: Bev, 55-64 Female (Patient) Published: March 25

I had my first symptoms 20 months ago, suddenly felt faint and had to sit. It happened a few more times, so I went to the doctors. I was told I had anxiety and given atenolol 50mg, which would lower the just discovered high blood pressure. I was so ill on it, stuck it out for 3 months, then just came off it and went back to the doctors. A different general physician (GP) told me I did have anxiety, but changed my tablets anyway. I started to feel a little better, but had terrible palpitations and still had high blood pressure. I often felt sick and yes anxious, though I am not normally anxious, but after getting nowhere with this for 8 months, it was not really surprising. It also seemed that every time I needed to empty my bowels, I felt worse, faint, sick, weird and unfocused. I had told the GPs this and still I had high blood pressure, so they just kept upping my tablets. They tested my urine for 48 hours and found nothing. Then I was sent to the cardiology department at the hospital, where they found I had blocked arteries and a dodgy valve. Eventually I had 3 stents in one artery and a balloon in another, but the surgeons told me they did not think the symptoms I had, were actually related to my heart problems. I just despaired, hoping I would miraculously feel better afterwards and of course I didn"t. I am still unable to keep my blood pressure down and so had to go back to the doctor last week. She asked me again about my symptoms and she suddenly said I wonder if you could have pheochromocytoma. So I am actually having the urine tests again and though in some ways I hope it isn"t that, I will also be relieved to find that I do actually have something that is not anxiety.

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Comment from: marge, 65-74 Female (Caregiver) Published: March 21

I am a 71 year old female. Started these symptoms in Dec. 2013. I have not been diagnosed with pheochromocytoma, however I am experiencing some of the symptoms. I'm waking up 2, 3, 4 am with extreme high blood pressure 212/113, pulse rate 99 to 104, rapid heartbeat, ringing in ears, legs and feet burring and stinging. I wake up my family, who think I am having panic attack. I've never had panic attacks before. I am rapidly losing weight. The heart doctor put me on high doses of blood pressure medicine and beta blockers/channel blockers. I am afraid the doctor won"t believe me if I suggest this could be pheochromocytoma.

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Comment from: mushroom lady, 55-64 Female (Patient) Published: June 24

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!

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