Patient Comments: Pheochromocytoma - Experience

Please describe your experience with pheochromocytoma.

Comment from: Female Published: June 05

I am a 28 year old RN who has had high blood pressure since 18 years old. I was overweight for my petite 4'11 frame. So all doctors gave me the loose weight spill and sent me own my way. After several years and getting married, one day I went to ER where I worked with a severe headache. My blood pressure was 220/120. Found a new primary care doctor who essentially came to same conclusion (I was fat) and did some basic labs and sent me on my way, just added Vasotec to the Adipex now. So for years I have been off and on medications and got pregnant and had a normal delivery. No blood pressure issues, of course because I was on birth control. So know I have lost about 80 pounds and my blood pressure is still 180/110. Found another primary care doctor who immediately thought this was not right. Did a blood catecholamine and my level was over 700. Normal is 100. So I now I have to see an endocrinologist for a definitive diagnosis of a Pheo. So now it is sit and wait.

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Comment from: new1, Published: June 03

I am a 27 year old female who has suffered from panic attacks since 7th grade. I have been to several doctors for a numbers of things, but at 16 I had an ultrasound done on my kidneys because of unbearable pain I was having. The doctors saw nothing and did nothing. Nobody took me seriously everyone thought I was making these things up. I started having awful mood swings, thought to be psycho, crazy and depressed and now I can't take 4 steps without pouring sweat and my blood pressure is severely high. Only last night on TLC I watched a show with a young mother inflicted with this illness. I saw myself in her and I'm glad. I think I've found an answer after almost 14 years.

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Comment from: Robyn, 45-54 Female (Patient) Published: June 03

In April I was sent to emergency with a BP reading of 240/130. Thank god I have a wonderful primary who sent me through a barrage of tests; blood levels, hormone levels, echocardiogram, ultrasounds, 24hr urinalysis and a CT scan. The CT scan found the tumor and the urinalysis and more blood tests confirmed it was a pheo. This past Tuesday I had the left adrenal gland and tumor removed. The pathology report will be back by the time I see the surgeon for my post-op check. I am keeping a positive attitude there. The overload of hormones, steroids and other things that were being released from the tumor will take time to dissipate. My surgeon has reassured me that within a short period of time I should be able to come off all medications. In response to the poster, you need to get on some specific meds to bring down your BP. You need to be on an Alpha blocker called Dibenzyline. It's very strong and is very specific in blocking the catecholamines that the tumors are producing. It was very effective for me and you must be on it for at least 7-10 days before your surgery. Once the alpha blocker is introduced you can the start taking a beta blocker such as Lisinopril to help with the elevated heart rate. Hope this is a help to you and any other patient still waiting for surgery.

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Comment from: 13-18 Male (Caregiver) Published: May 11

My son who is 19 now, but when he was told he had Pheo. He was 17. We found out when he suffered a major heart attack 2 days before Christmas. He was on life support for 4 days before they figured it out. We new he had high blood pressure, we had just had a Echocardiogram, and everything was fine. That really through them off, because they thought it was his heart. He was one hour away from open heart surgery when they figured it out. They saw the large mass, the size of a grapefruit on the adrenal gland. Once they new what we were dealing with it was treatable with meds. Until he was stronger to go get surgery to remove the tumor. Unfortunately it has done damage to the heart. It was Cancer, but right now he is fine going for scans every 3 months. They said it was very uncommon to have it come back. I read that ladies comment about her 21 year old son, and they kept returning. My son went to Iowa City for his treatment. I would love to share information with that women. Anyway my son is doing great he still complains of stomach pains (I worried). We almost lost him and I am so thankful we didn't. If they wouldn't have found it when they did he would of had heart surgery for nothing.

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Comment from: 19-24 Male (Caregiver) Published: May 11

I have read all the comments and feel for you that your diagnosis took so long! My 22 year old son was diagnosed with a pheo by the college campus physician only after an initial visit for complaints of headaches. When the physician took his blood pressure it was sky high, he was constantly sweating, had heart palpitations, and when he would drink from a cup you would of thought he had Parkinson's because he shook so bad. He had his right adrenal removed by a very experienced surgeon who performed a laparoscopic adrenalectomy within four months of the diagnosis. Removal has restored his blood pressure to normal and all symptoms have disappeared. He is to follow up every six months with a normetanephrine and metanephrine testing. Plus once a year he will have to have a CT scan. The surgeon explained this follow up will last five years. After five years he will continue to follow up every two-three years. Good luck to all of you. It can be a very scary situation! We just pray that another pheo does not develop!

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