Phaeochromocytoma ive been unwell for 3 years now, my blood pressure was s...

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ive been unwell for 3 years now, my blood pressure was so high it couldnt be read, i was sweating and suffered with terrible headaches. In Jan 2006 i went back to see my doctor i was feeling dreadful and he just said that i had a virus, by May 2006 i had every classic symptom of phaeo, but i was also getting awful pains in my abdomen, again i went to the doctor he said i had gallstones, but by this time i had researched my symptons and i found this condition, when i spoke to my doctor he told me that i was being ridiculous and that no way would i have this pheao because its so rare and he has never come across it in his 40 years of being a doctor.Iam now waiting surgery but iam suffering from the moment i wake till i fall asleep, and even then i wake having panic attacks in the middle of the night. According to a scan my tumor is 4.3 cms and iam looking forward to making a full recovery and being able to get back to a pain free life and enjoy my 3 year old, as at the moment i just do not have any engergy to do anything.

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  • Posted

    Hi just wondered are you getting any other symptoms apart from the one's you have mentioned. And what blood tests or any other tests eg: scans did you have, to find the Pheo? I have all the symptoms, but nothing has shown up. I have a container at home for a 24 hr urine test, but I am waiting until I have an attack before collecting the urine. I have had 4 urine tests, but recently found out my Metanephrines have never been tested. I was told by a Dr, that the Metanephrines test is the Gold standard for a Pheo.

    Hope the operation goes smoothly for you.

    Merryl.

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  • Posted

    Hi Merryl

    so glad to have read your story my sister had a pheo some 20years ago so i have been aware for a long time i could have one.

    however after 4urine test still nothing has been found. But everytime i am unwell i have all the classic signs of having a pheo but mind come in bouts last one was back in feb till may when the blood pressure was way high and i had sweats then i have been fine since normal blood pressure and no sweats they are back again now this time i am really fed up with no real reason. I am not sure what to do as i am sure my GP thinks its all in my head

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  • Posted

    Hi Joni

    I only just noticed your reply, I have'nt been on here for a while. Sorry to hear you have been having symptoms. Could you tell me if you don't mind, how your sister's pheo was found?

    I have had 4/5 urine tests, but all came back normal. In the USA, they have a blood test called Plasma Free Metanephrines, which is pretty accurate. But unfortunately they don't carry out this test in the UK. I am hoping to see a consultant again in the new year about my symptoms. Like you, the Dr thinks it is stress, I wish.

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  • Posted

    Hi Merryl

    So sorry havnt been on site for a long time. Hope your okay and you`ve had a diagnosies. My dear sister was really lucky in finding her's her local hospital was a teaching hospilal and her consultant was on the \"look out \"her symtons were high blood pressure. Has your symtons been in cycles e.g bouts of high blood pressure, then tummy pain? hope your well.

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  • Posted

    Dear J,

    Your experience is rather typical nowadays. As patients gain more knowledge in pheochromocytoma, they often correctly suspect they have this disease. I recently started a blog at ****, where I'd like to discuss with patients and colleagues about pheo. You and your friends are welcome to visit and to post questions and comments.

    Best regards,

    Dr. Pheo

    [color=green:8dcd1016d3][i:8dcd1016d3][b:8dcd1016d3][size=9:8dcd1016d3](Sorry but Patient Admin have removed either a telephone number, an email address, and or web address, from this posting, as it is the policy of Patient UK not to publish these on this forum.)[/size:8dcd1016d3][/b:8dcd1016d3][/i:8dcd1016d3][/color:8dcd1016d3]

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  • Posted

    I would like to wish you good luck with the operation for your pheo I had a tumour the size of an orange removed about 1979. It took ten years to get it dianosed. It is quite difficult to adapt after the operation you will find that you may become quite emotional and more sensitive to all drugs I was unable to drive my car as everytime I got behind the driving wheel I started to shake! I had to have councelling for that.

    If you would like to contact to share experiences please do Best Wishes Sonia

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