I had a pheochromocytoma for approx 10 years before diag...

Posted , 11 users are following.

I had a pheochromocytoma for approx 10 years before diagnosis.I had high blood pressure 280/210 at its highest,i also had papitations,breathlessness,burning back pain just below my shoulder blades,tiredness,nightmares,feelings that i was soon to die,inability to relax. I had my pheo removed last september,but unfotunatly i have signs of another one,so am starting again next monday.I dont know yet if it has reocured somewere else or if some was left in from last time.Is that possible i wonder? if so at least it will be easy to find.

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1 like, 8 replies

8 Replies

  • Posted

    At last a bit of hope. My sister has been diagnosed with this tumour on her adrenal gland. Please could you let me know where and who youre surgeon was we are having trouble finding somebody who has done this op before.

    Wishing you all the very best for the future.

    Thank you

    Jules Standaloft.

    [i:6b27146fab]This message was automatically imported from the original Patient Experience[/i:6b27146fab]

  • Posted

    Hi, My pheo was removed by Mr Barney Harrison,at Sheffield Hallamshire hospital,good luck.

    [i:ac52023306]This message was automatically imported from the original Patient Experience[/i:ac52023306]

  • Posted

    May I join the club!

    I too had a pheochromocytoma, this was found after a scan on my arm after mastectomy.

    Gobsmacked was the word, when I found out.

    Was operated at THE Royal Hallamshire in Sheffield,by MR Harrison, I know there is not many places that do it.

    I am now having more sweats,yet tests come back ok.

    Have heard that they can give a false reading,but I'm no Doctor.

  • Posted

    hi there!!i am just looking for some kind of advice really about me 14yr old son,he has been suffering with head aches for years they used to make him sick alot an was having almost daily he still has them but not as bad they are bad when he exercises an he also gets tight chest an palputions an while taken his pulse one day it shot up to 161 and he had done no walking or anything other than be sat down, but he then satrted to have muscle aches an pains in his bones docs keep palming him off with, oh he has those headaches from stress an the muscle aches an pains because hes growing, now he has been having very bad sweats to the point where he has to wear a jacket when its hot because of the emarresment of sweat pouring down his arms bk chest etc,he also is boiling hot all the time including in cold weather an sleeps with his window open even in the snow,its so bad even the car heaters an the heat that comes out of the hoover make him feel uncomfortable,recently he had blood pressure taken at school an it was high, so came home an told me i took it myself an it was still high, so took him to the docs who took it an it was also high there,she was concerned an told me that she wanted a blood test an a ecg done 2 days later an she was going to contact a specialist to see him urgently, an so i came away from the surgery only to have a call off the off the doc 2 hrs later saying she had spoken with the specialist an he wanted him to go to the hospital, basically at hospital they took his bp for a few hrs while he was led down sleeping, an because it was 126/70 an therefore normal at tha time they sent him bk home, now my worry is are they missing something here there has been a few sudden deaths on his fathers side with very close family an im very worried that they are missing something could sum1 please give me some advice on what to do coz im going out of my mind.
  • Posted

    if there is anything similar to what I had, 1

    test is 48 hr urine test.

    I can only suggest you ask to see another consultant,& demand the ecg,& full investigation into it all. Don't let them fob you off.

    Obviously I'm no Doctor, so cannot advise on his symptoms, but as said demand things, you have to these days. Good luck, & hope son is soon well . xx

  • Posted

    Hi, I had my pheochromocytoma in 1984. I was told they had only had a handful of cases before, & not a lot of info on it. I was given a 24hour urine collection test, & a CAT scan, which luckily found it. When it was confirmed I was surrounded by doctors asking questions about my symptoms & writing it down. I was told the info was going in the medical books. I had also previously been ignored because I was feeling fine when they took my blood pressure. They finally agreed something was wrong when I had all sorts of things in a urine test. I only had the test because I was pregnant! I was taken into hospital at 7 months weighing 7stone 10lbs. They put me on a double protein diet & did a test for diabetes - which of course I failed. I think my body was coping as best it could at the time. I had to have a c.section because they wouldn't let me go through labour & my son was born with no problems. They let me go home for three months then I had to go for surgery. I was told afterwards that my heart stopped during the op, but of course I came through it ok. Later I was told I was the first person to survive that they knew of. I have never stopped being thankful to Mr Naylor & the team of specialist doctors for saving my life, & my son. By the way, when I first went in & they checked my blood pressure it was 220/210, & I was asked if I had a headache! It would be so nice to think that the information I gave doctors back then may have helped others.


  • Posted


    sorry to hear you have been poorly again.

    i am being checked for Pheo.

    i also suffer with pain under shoulder blades mainly the left side.

    do you know why you had/have the pain?

    i had a CT scan, abnormal left adrenal gland, waiting further results.

    Warm Regards

  • Posted


    ​How did it take 10 yrs to get a diagnosis That is dreadful !!! x

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