Patient Comments: Pheochromocytoma - Symptoms and Signs

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

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: surviver, 45-54 Female (Patient) Published: June 21

In 2004 I developed a rapid heart rate that would occur every morning about 4am. This would last for about 2 hours. Around 1pm my energy level was at rock bottom. I started developing severe HA almost daily along with a feeling of severe impending doom. I finally presented to the ER with severe abdominal pain and was found to have a BP of 196/120 with a HR of 130. CT of the ABD revealed bilateral adrenal tumors both measuring 4.8cm. 3 months later I had a left adrenalectomy and biopsy of the right which revealed no evidence of a pheochromocytoma. The instant I woke up from surgery, I felt 100% better.

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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