Anticoagulation

Hi folks. I am new to this forum and was wondering if anyone could give me some advice. I am 36 and have A.flutter, and AF. I have symptoms on a daily basis and sometimes for several hours and very fast (160 Bpm approx). This has been every day for the last 18 months. Before that I had palps for 6 years on and off but not severe and not diagnosed. Anyway..I had an ablation 7 weeks ago and do feel a little better. My main concern is that I am not on anticoagulation. ..my EP specialist is adamant I am low risk according to the CHADS-VASC risk assessment. This does not sit completely comortally with mE but then I do tend to worry about the worst case scenarios. Has anyone else experienced these concerns about not bring on anticoagulation? I would really appreciate some advice. Thanks:)

23 Replies

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  • Hi,

    I also have p.a.f, and not yet on any coagulation. Were u not on coagulation for your ablation?

    It's obviously done on an individual basis, and like yourself my chads score is low.I have asked my E.P this and awaiting reply.

    All the best

  • Thank you so much for your reply rich. Yes..I was on aspirin for 6 weeks following the ablation but that has been all. My EP specialist is very confident that my risk is less than 2% but other doctors that i encounter (eg. GP, even my general cardiologist) have asked me if my EP specialist does not want me on anticoagulation as I have daily symptoms. This worries me!!! My EP doc said even if I were in permanent AF i would still be low risk! I should learn to trust what I am being told I guess but the risk of stroke plays on my mind on a daily basis, especially when I am in AF and it feels so dreadful.

  • I know what u mean, if I have an episode I worry about the stroke risk and reach for the asprin....

    im 31 and luckily only have a few episides each year, however I get lots of palpitations and funny beats daily.

    juat out of curiosity, were u on anticoagulation before?

    juat that im waiting for ablation but not yet on anticoagulation.

    Cheers

  • i am no expert,and always seeking advise myself,but the way i understand it,is that your age and history are factors,so because you are young you wont need to,unless you have others problems going on.

  • Thanks so much. Yes..that is what the EP explained to me and I am lucky to have otherwise good health. It's just a worry of mine as a lot of people on websites who would also be low risk seem to be on aspirin or warfarin. But it is reassuring to sre this forum and get answers from others that are reassuring so thank you:)

  • I wasn't on any anticoagulation before the ablation. I think the EP used heparin IV during the ablation though (at least a nurse told me she thought he had as I was concerned about it then also!). I felt safer being on the aspirin for 6 weeks but now that has stopped:( I would be interested to hear what your EP says about anticoagulation if you wouldn't mind keeping me posted.?! Good luck for your ablation. .I was terrified before mine but it was actually really straight forward and no bother at all. It has even helped me a bit which is good:)

  • Firstly where on earth are you? NICE in UK removed aspirin for stroke prevention in AF last June as it has little or no benefit yet still causes risk of stomach bleeding. It is not an anticoagulant but an antiplatelet and is not to be used for PRIMARY stroke prevention. It has uses in other areas of cardiac care.

    May I suggest that you look at CAREAF website where there are full explanations of all these facts and you should be able to take this to your doctor and discuss it fully as ONLY you have the right to make those choices. Many EPs in UK are now of the opinion that even a successful ablation does not remove the stroke risk so you may well be right.

  • I know its complicated but is the principles of a anticoagulation the same for someone who has paf? It happens 2/3 times a year.

    so.im.guessing that means I have a 5x greater risk of stroke during those episodes and back to normal risk during sinus rhythm?

    Just a bit confused by it all.

    I have the added joy of suffering ulcerative colitis, so not sure warfarin would go very well with that in mind.

    cheers

  • Rich it doesn't work like that actually. If you have AF period you have a risk thanks to the changes within the atria. Whether one accepts that risk or not is up to the individual but I, know how I feel about it. It really doesn't make any difference if you have AF once a year or every day.

  • Thanks, Vony - thats exactly what im trying to.do - Relax.I will let u know what my E.P suggests.im sure he will have to liase with my gastrointestinal doc....oh the joys.

    Bob thanks again, if I have the option I would anticoagulate im sure.

    Not sure what options may be available though, in regards to the contrasting conditions.

    Play with what you got, as it goes.:-)

  • Oh gosh rich 10. ..that is horrible for you having both those problems:( my EP told me that the CHADS-VASC risk assessment is the same whether in AF all the time or in paroxysmal AF. Like I am described as having paroxysmal AF despite having it at some stage every single day (not so much the last 2 weeks.) . I have been in an arrythmia called bigeminy a lot since the ablation. ..totally harmless, just a lot of missed beats, but it makes me feel as if I am about to go into AF but it doesn't happen! It's not that pleasant a feeling but even it has also decreased recently:) yeah..gosh..warfarin and ulcerative colitis. Maybe it's lucky your score is low then. I work as a nurse and spoke to one of the doctors on our ward about it all recently. She said a couple of her relatives have been on warfarin and if it can be avoided then it is a good thing as it can be a bit of a nightmare at times in terms of drug interactions etc. She advised me to relax a bout it all lol...easier said than done:)

  • Hi Bob. Thank you...that is very helpful. I am in N.Ireland. My EP told me about the research re.aspirin last October when I asked about going on it. He only put me on it recently post ablation for 6 weeks. His decision to not use anticoagulation generally for me is based on the CHADS-VASC. Anyone I know who has AF is on warfarin but then anyone I know is older. Also, the amount of hours I am in AF daily concerns me, though this has thankfully decreased the last 2 weeks to maybe an hour per day. Thanks again for the info. I will have a look at CAREAF:)

  • I had a similar problem to you. My GP thought anti coagulation was a good idea, I wasn't sure about it, a little nervous about taking that step. I went to see a private EP to discuss it, he said no anticoagulants yet, my score is 1. I then went to see my cardiologist because I have mild mitral regurgitation, he said he'd prefer me on anticoagulants. So, with reading everything on this forum and listening to the cardiologist I decided to go onto Apixaban.

    I am older than yourself, almost 64 and I have PAF in very short bursts, seconds/minutes. I haven't got over the worrying stage yet, but intend to. I can only suggest you speak to your GP if that is what you wish irrespective of what your EP says.

    Good Luck.

  • Thanks for that. It is reassuring to hear that your EP said the same as mine re.the score, though you had the added complication of mitral regurgitation. Poor you. At least you are being well monitored. I hope you get over the worrying stage soon. I spoke to my GP about my concerns; he pretty much told me to take the specialist's advice. Maybe I just need to have a word with myself about all this worrying I am doing!!! It is very usedit hearing from other people who habe had queries about anticoagulation. Thank you so much.

  • Another soul being led up the garden path by an EP who seems to misunderstand the function of CHADS.

    With AF you have a 5X increase in stroke risk... period. As you add points from the CHADS matrix that considerable risk rises to 6, 7, 8, 9 etc.

    When do you think it will be high enough for you to start protecting yourself?

    5X was enough for me and should be enough for everyone unless there are really serious reasons why you can't take anticoagulants.

    If I was just twice as likely to have a stoke than everyone else, I'd be on anticoagulants, never mind 5X.

    Stop being misled by CHADS (and those who should know better).

    AF in itself gives you a high stroke risk irrespective of your age or the frequency and duration of episodes. CHADS goes on to look at additional risks. OK? Additional risks.

    Love yourself.....protect yourself. Anticoagulate Now.

  • I regularly read the correspondence & there appears to be a conflict ion of opinions between official recommendations and an EP here. What I do know is that young, fit human beings have strokes & if the risk is 5 times greater because of sufferering AF - Who'd take the risk ???

  • Agreed!

    The 'conflict' lies in the interpretation of CHADS. Wrongly, too many folk (including professionals disgracefully) are interpreting CHADS as a measure of 'total risk' instead of 'additional risk'. Consequently, too many folk dangerously think that zero points on CHADS means zero risk of stroke! It most certainly doesn't.

  • Oh my God. Now i am scared!

  • I really was'nt going to reply to this, but as usual things got the better of me.

    Right, CHADS and CHADS2, we have to go with the knowledge that we currently have. If you score '0' on either of these charts what does that mean to any logical thinking person.

    It means that you are at no greater risk of stroke than a person who does not have AF.

    The purpose of taking asprin in a male under 65, is that it is used as a blood thinner, there is no medical evidence (even nice agree), that a male under 65 needs anti coagulating, stick to the asprin and start exercising.

  • I was told by my EP that my risk of stroke is less than 2%. Honestly, i am getting seriousy worried though reading some of these experiences:( my brother was on warfarin and it was am awful time for him...constant trouble with his INR and then he had a bad bleed in his bladder due to the warfarin and ended up really unwell...that is why i see the risks of warfarin too. So hard to know what to do for the best. I an trying to trust what the research and my specialist have said but a lot of the folks on here seem to have researched this to the Nth degree which also scares me:,( thanks for taking the time to reply folks. I have tried to steer clear of reaearching everything as when i was diagnosed , i was spending too much time researching and it was becoming all consuming for me and very frightening. Now i am worried i have been burying my head in the sand.

  • I'm not sure I can explain what I want to say Vony. I am a retired nurse and I too researched the research!! Don't forget that interpreting research is a very skilled thing in itself, also recognizing "good, meaningful" research from the less accurate stuff .

    It is so important to get the balance. Yes, you may have to fight your corner. There is no one more interested in getting you the best treatment than you! However, statistics are very useful for professionals, helping them to make decisions using not only their experience but the experience of others and available facts. On an individual basis statistics do not provide a crystal ball for YOUR risk or your future health.

    I have tried to re frame how I look at my health and the first thing to remember is that you are far better off than the thousands with AF who go undiagnosed.

    If it is important to you, having looked at the research to have an anti coagulant and there are no physical reasons why this would be a bad thing, then this is where the fight your corner bit kicks in. Aspirin is not the answer.

    It is so hard to find the balance between doing the best for yourself and taking responsibility for your health and shipping into obsession!!

    Best wishes Wendy B

  • Thank you Wendy for your thoughtful answer. I agree with everything you say. I wish i could just relax and trust the 'less than 2% risk' statistic as warfarin is not a drug i particularly want to be on. But i also do not want to have a stroke obviously and there is a risk of that. At present, i am going to hold fire anc see how i go with the ablation as things have definitely improved for me. I have had the discussion about anticoagulation with my EP many times now and i do have faith in him. I think i bordering on obsession with my worry about it which will ultimately not help my BP, AF or overall wellbeing. So yes, it is about balance of everything. Thank you.

  • I often wonder if non-prescribing of anticoagulants is a money thing or are the long term side effects from these drugs, their interaction with other drugs, etc. more negative than patients know. Hopefully it is a money thing.

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