Not just simple AF - adrenal glands involved!

Posted , 8 users are following.

Hi,Have posted several times in past on all aspects of AF - was diagnosed over 2yrs ago and have been struggling ever since. Had an ablation last March but seemed worse afterwards - was getting hugely swinging BP, terrible headaches, pounding heart etc I somehow thought my symptoms were far more severe than others with AF but my doctors ignored my descriptions and put them down to anxiety.

Before Christmas I also had nausea and vomiting and ended up in A&E with suspected appendicitis. They did a CT scan and low and behold found masses on my adrenal glands.

Am currently in middle of multiple tests but looks like I have 2 Phoechromocytomas - one is rare but even more rare to have 2. These can have been causing my heart symptoms all along. I feel vindicated that I was right in feeling it was more than AF but also scared at the prospect of having both my adrenal glands removed - a life changing operation I think.

This is a cautionary tale that sometimes doctors can have tunnel vision and don't look at the wider picture.

Thanks to everyone for your support with AF over the last 2 yrs.

Maggie

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8 Replies

  • Posted

    Good luck Maggie, i hope all goes well and you get better very soon.

    Ken.

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  • Posted

    Best of luck! Sorry to hear diagnoses, but you are right that at least now they are on the right track.
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  • Posted

    Hi Maggie,  are you the one from Nelson I replied to a while ago?  Glad to see u have finally got a diagnosis,  hope all goes well for u take care.
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  • Posted

    Hi Maggie, I'm guessing you have mixed feelings with all this.

    bad that you have it, but ultimately good that they have been found!

    Best wishes with it all, hope it  sorts out your AF and makes you feel much better.

    Do you know what things will be like with no adrenal glands?

    P.S. I went back into afib this morning after being in rhythm for 11 months.

    Went into A&E (my brother is the head consultant there), got seen straight away, was cardioverted and was home for lunch!

    I had no idea that I was in Afib, it was my blood pressure monitor (that has an Afib function incorporated into it) that picked it up. I was completely asymptomatic. Guess I can live with it if only need to get zapped a couple of times a year, but suspect that ultimately will end up have to need an ablation.

     

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  • Posted

    Thank you for sharing your experience. It seems all too easy, once you're diagnosed with AF for clinicians to blame AF for all the 'common' accompanying side effects and I am also at this stage where I know all is not well but the health service seem to expect me to self-diagnose or just 'live with it' which I, like you, am not prepared to do.

    Well done for persevering and hopefully your EP will share your case (anonymised) with his colleagues so they can learn from it and not act as though the rest of us are going off our heads when we tell the truth about how we feel in an effort to improve our lives.

    All the best... 

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  • Posted

    I have to agree GP's & the medical profession on the whole dont always get it right, infact they can often get it wrong.

    Regarding your situation Maggie,  i would have thought that routine blood test should have picked up on the Phoechromocytoma ?

    All the Best

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  • Posted

    Hi Maggie,

    I am so sorry you have had to go through so much to get to the truth, but you are right once you get diagnosed with AF they throw the same treatment at all of us and do not take into account existing health problems, or indeed look for another cause, a similar thing has just happened to me, I have questioned the diagnosis from day one as I like you have an immune system that doesn't work, it has taken

    a year for them to listen and realise we are all different and one size does not fit all.

    I hope all goes well for you  take care

    Linda.

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