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Atrial Fibrillation Support

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Thoughts please.......

Jimppy profile image
26 Replies

I've been having frequent ( usually at least once a day ), short ( up to a couple of hours ) episodes of afib now for the past year. it's not too problematic for me as my rate is well controlled with bisoprolol and flecainide its just uncomfortable and irritating really. Because of the frequency of the episodes I would have thought My cardiologist would have put me on anticoagulants but he seems very reluctant to do so saying that although I have frequent episodes they are not of sufficient length to increase my stroke risk significantly, my chads score is 0. Not convinced by this I asked another cardiologist and an A&E consultant who agreed that there was no need for anticoagulants. There seems to be varying opinions on this amongst professionals and my own cardiologist even admitted that they don't fully understand the mechanism involved in the relationship between AF and stroke. Don't get me wrong, I'm in no rush to be put onto anticoagulants but I don't want to be more at risk of stroke if I can avoid it either. Do I ignore the opinion of the professionals I have spoken to and insist I be put on anticoagulants or do they have a point and I should continue as advised? Has anyone else had a similar dilemma ?

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Jimppy
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26 Replies
BobD profile image
BobDVolunteer

OK lest consider the problem. Anticoagulants kill some people. Maybe only one in a thousand may have a serious bleed but it could be you or I so one needs to balance the risks.

AF makes us more likely to have a stroke. Chads and Chadsvasc scores are helpful but not idiot proof. They are the best we have at present but still far from ideal.

HASBLED is a score not often mentioned which tries to project the risk of major bleed events.

So, before we look at recommending anticoagulants we need to look at all the risks and come up with a balance of risk so if you are young(ish) and have no other risks such as high blood pressure, diabetes. prior stroke or TIA etc then at present one must say that your risk of stroke may well be less than your risk of taking the anticoagulant.

That all said I wouldn't necessarily agree that stroke risk is dependent on length of AF event but I'm not a doctor. Many EPs do think that AF should = anticoagulants but just as many doctors may not share that view and at this time the NICE guidelines rely on CHADS and Hasbled and a discussion with the patient.

I believe that CAREAF website may have more on this subject but in UK it is supposed to be patient's choice.

Don't be too eager to go that route until you have carefully considered what it will mean . It really isn't black and white.

Jimppy profile image
Jimppy in reply to BobD

I absolutely agree with everything you've said. I'm inclined to follow the advice of my cardiologist but what makes me think is when I read of people being put onto anticoagulants immediately after diagnosis and I wonder if their doctor knows something mine doesn't. im 52 so I suppose a bit of a youngster in the world of af but There is so much conflicting opinion and information out there that it is sometimes difficult even to,form an opinion of my own !

BobD profile image
BobDVolunteer in reply to Jimppy

The problem is we don't always get full info from members re age or other conditions so as you say it is difficult to judge. What I do know is that UK is one of the worst countries in Europe for stroke prevention in AF and it is estimated that several thousand strokes a year could be saved if all those at risk patients were put on anticoagulants. Many GPs fear bleeds far more than stroke and shy away from prescribing as do some plumber cardiologists. The EPs are better at this in general. As I say patients choice is all in this patient centred NHS of ours so if you do decide then don't be put off.

Bob

PeterWh profile image
PeterWh in reply to Jimppy

Jim. That is the 64,000 dollar question!!!!

There is a good clue in the words "my own cardiologist even admitted that they don't fully understand the mechanism involved in the relationship between AF and stroke".

The default situation certainly appears to be, and was in my case, that the medics as soon as someone is diagnosed with persistent AF automatically prescribe Anticoagulation immediately. It also appears to me from what I have heard that this also often happens when someone has paroxsymal AF. My hunch is that they take this course of action because many people who have AF also have other underlying conditions and until a number of tests and reviews are undertaken and completed they can not truly assess what the CHADSVAC score is and what other factors come into play.

There are probably many cardiologists / EPs / GPs who believe the answer is yes and also many no. One big thing that I personally think may come into play is the disease we have caught from our American cousins - litigation (no offence intended). Unfortunately a lot of our legislation was never written with the thought in mind of litigate if remotely possible. Let me explain a bit more.

As Bob says the CHADSVAC scoring is helpful but far from ideal but is what we currently have. On the one side some medics take it as gospel and like a mathematical formula and that you don't get a point until you are actually 60 or 65 - ie 1 minute to midnight you don't have it and then 1 minute past you get that magical point. People on here have had the problem with that. That is nonsensical. The medics also miss that it is a guideline not a rule.

However if the consultant says he believes you should take anticoagulants then in the unlikely event that you have a bleed lawyers will argue that the consultant has gone outside of the NICE guidelines and therefore is liable. However if consultant tells you the pros and the cons and then you do decide to take anticoagulants then if that remote chance of a bleed occurs the consultant is not liable!!! Sometimes you can get a better view if you ask the question what would you do if you were in my shoes? Sometimes they will still sit on the fence but sometimes they will say well I personally would ............

Personally I have come across one person in their 40s, two in their early 50s and some others who have had major strokes and it can be devastating. One that I knew, late 60s? or so, had a major stroke and was paralysed from the neck down, could only grunt but brain was 100% lived like that for about 17 years.

At the end of the day as Bob says the choice is yours. If you decide yes then you may find that the medics are very willing to give you the anticoagulants but, however, some medics may fight it. If they do then just insist.

PeterWh profile image
PeterWh in reply to Jimppy

BTW there are few on here who are in their 20s / 30s

Jimppy profile image
Jimppy in reply to PeterWh

It's very easy to forget that younger people are affected by this too, I was diagnosed when I was 22 and sotolol managed it beautifully until just a couple of years ago which is why it makes me smile when I'm referred to as a youngster in the af world. I've had it for more than half my life!

Have you told your cardio how scared you are of having a stroke? If indeed that is the situation. What the patient fears most can affect their decisions, especially when it's borderline. I've always had a CHADS score of zero, till I recently reached 65, so now 1, but have been anti-coagulated for 12 years.

Koll

PS. My AFib was persistent but usually controlled, so not actually many symptoms during the past 12 years.

Elaine1951 profile image
Elaine1951

Are you in USA or UK . I didn't have a choice a and e and cardio put me on 10 mg of apixaban as I'm female and over 60

Gracey23 profile image
Gracey23 in reply to Elaine1951

I'm in the US and have been prescribed aspirin for PAF. I'm 65, turning 66 on Thursday, hurray! My EP has told me at 70 I will most likely be on blood thinner. I'm probably going to get ablation before that because the thought of a blood thinner scares me.

Jimppy profile image
Jimppy in reply to Elaine1951

UK here Elaine :)

Mrspat profile image
Mrspat

I am in the same situation as you but 10 years older. Short runs of slow AF most days, CHADS 0. GP was happy about no anticoagulation but cardiologist insisted. The reason for her insisting was that I have a slightly enlarged left atrium. I had the impression that without this abnormality I would not have been prescribed anticoagulation.

AnticoagulateNow profile image
AnticoagulateNow in reply to Mrspat

I don't think you would be unique in respect of your enlarged atrium Mrspat. I believe most people with AF develop an enlarged left atrium, to varying degrees.

EngMac profile image
EngMac

Maybe the doctors should be trying to see why you are having so many episodes and find a solution that is better. Some drug combinations can make AF worse. I know this from personal experience. Frequent AF at your age is likely something you want to reduce, if at all possible.

Jimppy profile image
Jimppy

Thanks everyone for your input and its heartening ( no pun intended ) to know that I'm not the only person who thinks some of the things I do. There's plenty of food for thought in your replies and I'm grateful for the information and opinions, it's always good to hear what others think and it's always good to know that there are folks out there who know EXACTLY what you're talking about. :)

Lizty profile image
Lizty in reply to Jimppy

Hi Jimppy.... here's the deal in short. I have just been put on anticoagulants because my Chad measure is 2. 1 point because I am female. (statistically at higher risk) 1 point as I am over 65. Cardio says chad 2 is borderline. I have no other health risk factors. So as you do not fall into either of those chad categories you are at much less risk of stroke.

PeterWh profile image
PeterWh in reply to Lizty

That might be true if it was a 100% hard and fast rule. It isn't!!!

There are a myriad of contributing factors / situations and the reality is that the medical world is unsure because there is not a tremendous amount of research and in any event very difficult to do accurate trails in the same way as drugs are trialled. However for now it is the best guideline that is available. However because of the uncertainties that is why NICE allow patients to choose whether or not they want to take Anticoagulants even if CHADSVAC is 0 or 1. In addition our old friends statistics and comes in to play!!

One thing that I think many people miss is that medicine is actually not an exact science governed by distinct and clear rules and quite a lot of is is an art. Engineering and physics are two areas where things are very much more of an exact science.

Elaine1951 profile image
Elaine1951

I'd be tempted to have a second opinion from a cardio or EP. It's v important to feel you have the right advice. Some trusts of course are driven by the cost of prescribing drugs.

Pacific profile image
Pacific

I lived in US for 10 years, but it's very much what Bob stated; it really depends on the cardio. In UK I found both countries use ChadsvasC score; Heart.org contains all of this info for USA.

GP's seems to adhere rigidly to the age of 65, as though your body is a lunar Eclipse, when in reality there should be a myriad of factors being taken into account.

AnticoagulateNow profile image
AnticoagulateNow

Stroke is the second largest killer of mankind globally.

In shouldn't be too surprising therefore that on this forum, where posters are in a higher than normal risk category for stroke, that we frequently, and I do mean frequently, read extracts to the effect that "I was put on anticoagulants after my TIA" or "I've had AF for a few years but have only been on warfarin for 12 months following my stroke". There must be many more of course who are unable to tell us their story.

I cannot recall a single case of someone who has been taken off anticoagulants because of a life-threatening, and I do mean life-threatening, bleed. Of course I realise that such cases will exist but I would suggest they are few and far between and probably, are largely restricted to the 'very elderly' cohort.

Here's a bonus: On anti-coagulants you won't get a DVT on your next long haul flight either!

Your choice.......

Mrspat profile image
Mrspat in reply to AnticoagulateNow

Can I stop wearing those horrible compression socks if I'm anticoagulated?!

RobertELee profile image
RobertELee in reply to Mrspat

Yeeesssss! Mind you, some might argue for belt n braces.

teach2learn profile image
teach2learn

I don't understand why ablation was not mentioned. Why not stop the cause for need of anticoagulant? Not to mention getting your life back.

Jimppy profile image
Jimppy in reply to teach2learn

Ablation has never been discussed by either GP or Cardiologist. It would seem they want to exhaust the drugs route first. I just go with the flow...

teach2learn profile image
teach2learn in reply to Jimppy

Good reason for going directly to an EP (who specializes in the electrical conduction issues you're having). As numerous previous posters on this site have indicated, including myself, I didn't get any serious help until I saw the specialist. Also good to consider the worsening nature of the condition the longer it goes on without proper intervention (see the recent post with link to an article about that). The sooner the better with this insidious critter.

PeterWh profile image
PeterWh in reply to Jimppy

Read up on everything and challenge them.

Hi Jim, my approach is never take anything unless you have to. Second Big Pharma doesn't make any money and the medics look ineffective if you don't take them. Lastly, can the risk be reliable quantified and if so is it relevant. There's so much 'worrying information' out there e.g. eating meat doubles (or whatever) the risk of you getting cancer. The point is if the risk is over 1:1000 that's fine for me and probably a lot less than other things you do in your life e.g. eating processed non-organic food but that's for another day!

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