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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
1 like, 8 replies
Maxine50 maggie34838
Posted
Ken.
maggie34838 Maxine50
Posted
Maggie
deanna82033 maggie34838
Posted
moira23432 maggie34838
Posted
simon56380 maggie34838
Posted
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.
GotAbitBetter maggie34838
Posted
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...
Greebo64 maggie34838
Posted
Regarding your situation Maggie, i would have thought that routine blood test should have picked up on the Phoechromocytoma ?
All the Best
linda51222 maggie34838
Posted
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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