Pheochromocytoma Support Group

A pheochromocytoma is a tumor of the medulla of the adrenal glands originating in the chromaffin cells, which secretes excessive amounts of catecholamines, usually epinephrine and norepinephrine. Extra-adrenal paragangliomas are closely related, though less common, tumors that originate in the ganglia of the sympathetic nervous system and are named based upon the primary anatomical site of origin.

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  • AdminTeamDS

    Surgery for Pheochromocytoma

    Tell us about your personal experience with Surgery as a treatment: Has it worked? Have you had any issues? Any recommendations or tips?
  • deleted_user

    All symptoms - but cant find the Pheo. Help!

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    I am wondering if anyone at all is going through anything similar what I am. I first went to see an endocrinologist because I thought I was hyperthyroid- my symptoms for about 6 years have been insomnia, heart palpitations, hot flashes but ice cold hands and feet, stomach aches, constipation, anxiety attacks- some that last for days. Latley Ive also been getting headaches and vomiting. The first...
  • danaferrellparham

    Tests for pheos.

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    About 4 months ago I started experiencing dizzy spells, upset stomach, pounding heart beat with my pulse rate in the 140's. I was first sent to a cardiologist and he ran every test available for my heart and my heart is very healthy. He had me were a 24 hour monitor and my heart never went down past 120, even at night when I slept. He sent me for a blood tests and my thyroid is fine, but I had a...
  • adeterminedmom

    my daughter / pheochromocytoma

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    My daughter is having 24 hour urine test for Pheochromocytoma this week. Please, any information is welcome. Please see about me for details. She is 11 and had slipped capital femoral epiphysis this fall. They both have connection to MEN type 2/3 and she has been very ill since late 2010. Thank you.
  • greenfingered

    pregnancy after pheo surgery

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    I was diagnosed with a phaeochromocytoma last year in August after becoming ill the previous year following the birth of my daughter. It took the doctors a long time to diagnose me because they were determined to put my heart palpitations down to fatigue as a mum. I went back week after week, finally begging for help from anyone to find out what was wrong with me. Finally they decided on the...
  • deleted_user

    Questions About Testing

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    I had the 24 hour urine tests for a pheo and my results came back high as follows: normetanephrine 862 ref 52-310 Norephinephrine 111 - ref range 15-100 catecholamines 124 - ref range 26-121 metanephrines 195 ref range 19-140 Total metanephrines 1057 ref range 95-475I also had a blood test called Metanephrine free and Normetanephrine free which was normal. Isn't this the gold standard for...
  • deleted_user

    What was your diagnosis?

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    Hi there,I'm currently waiting for bloodwork results to see if I have a pheo. I am 34 years old, female, and have had symptoms for 4 years: heat intolerance, severe sweating, heart palpitations, shortness of breath, headaches, nausea, contripation, fatigue, and trouble concentrating. I do have hypothyroidism and polycystic ovarian syndrome as well. My new endocrinologist ordered a ton of...
  • deleted_user

    which is better blood or 24hr urine

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    Which is better blood or 24hr urine for pheochromocytoma ? I do have all the symptoms. I had the blood test, doc says my level is only 2x higher than normal, but told not a big issue and not pheochromocytoma . The endo said my level would have to be at least 4x the normal level.Also, it was a fasting level, but he order a non-fasting level. Does it matter if it is a fasting for non fasting?Has...
  • deleted_user

    Does anyone have similar symptoms?

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    I keep having these "attacks" where my blood pressure goes up drastically, my heart starts pounding out of my chest and my head feels like it's going to explode. When it happens I get so hot that I feel like my internal thermostat is broken, and I actually get a low grade fever. Sometimes this lasts for hours. I feel scared when it's happening that I think I'm dying. Afterwards I feel completely...
  • moonsetmama

    Scared I won't get to raise my little ones :(

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    Hi all, I am a 26 year old mother of 3 who has been symptomatic on and off for about 8 years. Waiting on results for a blood test for pheo that the er ran yesterday. I am so scared out of my mind that I can't think straight. I am off of bp meds currently because the medications that were tried, made things worse. I'm terrified that I'm just going to drop dead at any second. Is this something that...
  • deleted_user

    Extra Adrenal Pheo/ Symptoms

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    Hello- I recently have been diagnosed w pheo. I've had two 24 urine tests and lots of blood tests among a few other lab tests that my endocrinologist determined pheo. I have had an MRI done on my adrenals and pituitary but no tumors in either. My doctor has determined it's a pheo not on the adrenals. Does anyone have an extra adrenal pheo/ paraciglioma ? Just wanted to check where they found it...
  • deleted_user

    Diagnosed today :(

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    I've been sick and have had problems for as long as I can remember. Spent half my life in doctors offices trying to find out what was wrong with me only to get no results for anything and just told it was nothing. I finally went back to see a new cardiologist to have my heart checked again. I am 28 years old and a single mother of three little boys.I explained to my cardiologist how I have felt...
  • deleted_user

    SO scared- could it be a pheo??

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    So... I've never been so scared in my life. It's taken me about a week to calm down enough to type up this post. I've been having some symptoms that started on February 20th, and I am going crazy wondering what this is. I think half of the people in my life think it is in my head. I know this is going to get really long because I'm spazzing a little bit... heh... but I'd really appreciate...
  • deleted_user

    malignant reoccurrence of a pheo

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    Hello Everyone. I am new to this site. I had a benign pheo suuccesssfully removed from my kidney in October 2005.I have had semi annual physical exams and all was well. I had a physical exam in March of 2011 and everything was excellent. I began feeling "out of sorts" in late August of 2011. I thought it was the 20 lbs I had gained over the last year combined with the heat. My Blood pressure was...
  • deleted_user

    Possible Diagnosis

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    I went for a neurological and cardiac consult just to make sure my history of fainting didn't have any underlying problems. I was not worried in the least bit about finding anything of significance. I'm 34 and have had high blood pressure that's been hard to control since 19 but it was thought by several pcp's over the years to be a hereditary thing. I saw an endocrinologist a year ago and have...