It was the Rivoroxiban: Well, after... - Atrial Fibrillati...

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It was the Rivoroxiban

19 Replies

Well, after being wrongly diagnosed by my GP that I had heart failure my EP ran some tests last week and phoned me with the results a few days ago.

Echo is fine, heart back to normal size

Thyroid borderline

White blood cells high

I was feeling tired and confused all the time, burning sensation on my skin, short of breath and swollen ankles

Changed pretty much every other med I was on over the last few months, but nothing improved things.

Told me to stop taking the Rivoroxiban , which I have done (not replaced it with anything, he doesn't see the need, I'm slightly worried by this) I am feeling so much better after only a couple of days. Energy levels returning, skin stopped burning, I can fill my lungs and feel like i'm breathing. Just the swollen ankles remain.

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19 Replies
PeterWh profile image
PeterWh

You can always go on one of the other NOACs if rivoroxiban does prove to be the culprit. Be wary as not all GPs realise the importance of Anticoagulation for AFers. It wasn't part of most GP's training as only found out about less than 10 years ago. 

in reply to PeterWh

It's the EP that didn't replace it. Big surprise

BobD profile image
BobDVolunteer

Sympathy on the ankles. I'm fighting similar after change of BP drugs. Two down and still a problem so wonder what next weeks party bag will bring. Gld you are feeling better.

Bob

in reply to BobD

Thanks, they are really annoying.

Hope yours are sorted soon 

teach2learn profile image
teach2learn in reply to

Have you tried compression stockings? They can be highly effective and not as ugly as they used to be.

hoppy77 profile image
hoppy77

Did you use a private EP, or one on the NHS?  There doesn't appear to be any NHS ones in my area - West Yorkshire. 

PeterWh profile image
PeterWh in reply to hoppy77

Not all CCGs have EPs or catheter labs but that does not prevent you seeing one having treatment. You can look up on main AFA website all EPs who do ablations and all hospitals. I seem to recall some have been to Leeds. 

in reply to hoppy77

NHS. Fortunately I live close to Glenfield hospital

ange1960 profile image
ange1960 in reply to hoppy77

hoppy if you are under LGI, there are a couple of consultants who specialise in Arythmia's and I believe are EP's.  I am trying to get 'swapped' over to one of those rather than then Cardiologist I was assigned by chance.  The cardio I was assigned has listed as his area of interest, 'Hospital Management and Public Health Strategy'.  Does not fill me with hope that he is going to be the best person to treat or advise me on my AF.   Chris Pepper or Graham Lee were recommened by a cardio registrar as best at LGI for AFibbers. Good Luck.

hoppy77 profile image
hoppy77 in reply to ange1960

Thanks for your reply. I have just made enquiries of Nuffield Hospital, Leeds, and their EP is in fact Dr Chris Pepper. No doubt one and the same. I will most probably have a private consultaton with him and then hope to get a referAl to  Leeds Infirmary.

ange1960 profile image
ange1960 in reply to hoppy77

He is the same guy.  Has a very good rep locally and among his fellow cardiologist.  Hope it works well for you. I've spent too much time lately on cardiology ward at LGI, they are lovely, but jI ust need the Afib sorting out now.  Have been in Afib since 10am today, and for the first time am taking fleconinaide as pill in pocket approach at home.  second pill due very shortly and if that doesn't work I will be back in for cardiversion to get the heart back to normal.  :(  it's exhausting.  

hoppy77 profile image
hoppy77

Had one and only cardioversion about 2 years ago. It was successful and I was OK until about 6 months ago when  I reverted to AF. My problem is that I also have angina. So I may not get another CV.

I'm having a problem persuading my GP to  refer me to an EP rather than my original Cardiologist. He's a nice guy but his opinion seemed to be that I will just have to live with it. He may be right but I want the best advice as to the correct medication - which is not working very well at present.

PeterWh profile image
PeterWh in reply to hoppy77

Can you afford the money to see EP privately?

hoppy77 profile image
hoppy77 in reply to PeterWh

I've read on this site that it costs about £250 for a consultation. Yes, I can and will pay that. 

PeterWh profile image
PeterWh in reply to hoppy77

Then go for it. That way you can do your research and decide who (sayv2) and then discuss with GP. However the final choice is yours and then GP can do referral. 

nettecologne profile image
nettecologne

Is anything being done about the borderline thyroid?

in reply to nettecologne

Not at the moment, it's borderline, but I'd rather not have to go through the horror of more nasty chemicals and then another load of drugs for the rest of my life.

Just having regular thyroid tests now

nettecologne profile image
nettecologne

Chemicals for what? Testing? Thyroid is simply tested by taking blood. And the load of drugs is just one pill in most cases. Problem is, even borderline thyroid probs can worsen AF and affect your whole life. Boderline low or high?

Borderline high.

The chemicals to kill the thyroid. I know the test is a simple blood test .

My EP is monitoring the situation.

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