Patient Comments: Pheochromocytoma - Symptoms and Signs

Question:What symptoms and signs did you experience with your pheochromocytoma?

Comment from: 55-64 Male Published: August 14

My symptoms where high blood pressure, 200/100, headaches, kidney failure, no blood pressure medication helped and I was on experimental BP meds under care of a kidney specialist. Nothing helped. I was diagnosed with pheochromocytoma, which was removed in 1977. I am a Vietnam veteran trying to connect with other Vietnam veterans as to its connection to agent orange. At this point there is no data I know of to make the connection. My surgeon in 1977 told me he had no doubt there was a connection to agent orange, but at that time there was no data to make the confirmation as there is not now.

Comment from: Medicine, 45-54 Male (Patient) Published: June 21

I was diagnosed with pheochromocytoma in 2003. They found a 6mm tumor in my adrenal, but I decided not to remove it. The tumor disappeared after six months. My blood pressure was 250/150 and I was admitted to the hospital a month ago. The CT scan result was swelling in the right adrenal gland that caused the high blood pressure. At this time I'm going to perform the next MRI procedure per my doctor's request. My blood pressure is back to normal now. If I can't take my medication after 12 hours, my blood pressure went back to high about 180/120 and I had a severe headache, back and neck pain, vomiting, shortness of breath, chest pain, and blurry vision.

Comment from: Amy, 35-44 Female (Patient) Published: January 06

I am a 37 year old mother of 3. I had my daughter when I was 19 and first began having the symptoms; Headache, heart racing and nausea. It happened all through my pregnancy. I went to multiple doctors and wore a 30 heart monitor. It came back with nothing and was told it could be related to stress of being a young mother and pregnant. After the birth of my daughter, I was doing ok for a couple of weeks. I progressively got worse. The headaches were unbearable and I could not keep food down. I was so ill that I was taken to the hospital and admitted. They put me on morphine for the pain and treated me with blood pressure medication. I basically slept for about a week and half. No diagnostic testing was done and I was sent home once things leveled out.

Comment from: a921, 45-54 Female (Patient) Published: October 11

After years of sweating profusely and going between depressed and super angray with a pounding heart rate. My pheo was found by accident when I had a ct scan of my lungs the radiologist noted the tumor on my adrenal gland. After having blood work and 24 hr urine done 4 times the endocrinologist told me she thought it was a pheo or carcinoid tumor I had a total body scan called an octreotide scan. Luckily my I only had the tumor on my left adrenal gland. I had a robotic adrenalectomy and now I feel fine. I am so fortunate this was found out prior to anything serious happening to me.

Comment from: Canadian, 45-54 Male (Patient) Published: February 24

The symptoms that brought me to the hospital and diagnosis of a massive 996 gram Pheo where pounding heart and missive headaches. After being diagnosed and doing some research I realized that I had other symptoms but never thought they included fatigue and constipation. From the first sign of symptoms to removal of right adrenal gland and tumor was 3 months. My Pheo was removed successfully about 3 weeks after diagnosis with open surgery.

Comment from: 25-34 Female (Patient) Published: February 04

I haven't been diagnosed with anything yet. Over the years I've been tested several times for hyperthyroidism, a few years back I lost like 40-50 pounds in 2-3 months with no effort on my part. I was overweight so it was like a new lease on life, but within six months I gained the weight back plus more. When I get my thyroid tested they always say my levels are fine. Since then there are times when my head shakes uncontrollably, it will shake like I have parkinson's. I get anxiety when it happens and the more I try to stop it the more it goes. In recent months I notice my heart beating fast and hard at any given time. When I'm relaxing it will do it, strangely. I do get headaches occasionally now, which is not normal for me at all. Until I read these stories I was kind of dumbfounded and just thinking maybe it's just getting older or I'm being paranoid. I did have an aunt who had grave's disease, and my dad and another aunt had cancer. I know what normal feels like to some degree and I know this isn't it. I guess you do just have to find a Dr that cares though. Needle in a haystack.

Comment from: Mark, 25-34 Male (Patient) Published: November 21

I have been getting lightheaded for approximately three years now. I have done every test under the sun and all have returned normal. I have asked my doctor about doing a 24 hour urine test and he has refused. I have been lightheaded, nauseous, near fainting, chest pains, etc. What else do I need to have to be able to have this minor urine test done? I have been referred to Vanderbilt in December by my new Heart doctor so maybe and I will find what is going on.

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Pheochromocytoma - Experience Question: Please describe your experience with pheochromocytoma.

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