I have had 3 EP's 1 stroke physician and 3 GP's tell me I don't need AOG and I still can't understand it. Like you I have been told I am at far more risk of a bleed than a stroke.
I am female and 64, but what do you do, as you say,. you have to trust someone I try and think that if the advice they are given me was to do with cancer or some other illness I would trust their judgement.
I've been told the opposite. My EP has had my anti-coaged for 12 years and has clearly stated I still need to be regardless of a CHADS score of zero (score now 1 as I'm 65). I'm a farmer and on the go all the time, bit like a builder I suppose! I have no family history, or health issues I know of that made him recommend AG's, just AF/arrhythmia.
Koll
PS. edited. There must be differences between us to explain the EP's opinions when evaluating risks. High blood pressure or whatever???
I think what should be pointed out is that CHADSVASC is a GUIDE, not a gospel. Many EPs now feel that anybody with AF should be on anticoagulation regardless of score. Another thing to point out is that scores can not be deleted, so for instance if you take BP tablets then you have a score even if your BP is "normal" whatever that is.
CARERAF website has some useful information .
Last year was issued (by NICE i think) a Patient Decision Aid (PDA) regarding anticoagulation which with the aid of bar charts and smiley faces explains all the risks using Chadsvasc and HASBLED and clearly shows how for every 1000 people some will have strokes and some will have bleeds at different points on the two charts. My understanding was that this PDA was supposed to be given to every patient considering anticoagulation and after due reading,, a discussion had with the medic. GP cardiologist or EP and the PATIENT's wish honoured. I think you should ask about that. (I spent hours proof reading the darned thing so hope it hasn't been ditched!) This PDA explains all the risks and benefits to enable you to male an informed choice.
Final thought for the day. You can always stop anticoagulation but you can't undo a stroke.
Sorry to say, at least in my part of Suffolk, your hard work on the PDA has been in vain. Never mentioned when I was weighing up the risks of being/not being anticoagulated v continuing horse riding/quality of life etc. This was only a few months ago
Of course some of us are more prone to bleeds than others and the chances of bleeding to death on anticoagulants is then much higher. But did your EP, in whom you seem to have so readily entrusted your life (have you met his parents yet?), tell you that you are one of those? Did you ask him 'why' you are more prone to bleeds than the average person?
Coz if you're not - it is statistical nonsense to suggest that 1000 otherwise healthy construction workers aged 60 on warfarin - maintaining a steady INR in therapeutic range - are more likely to bleed to death than a similar cohort with AF but no anticoagulation is to have a stroke.
And by 'bleed' we have to be talking about an event some way as serious as a stroke. The odd nosebleed or bleeding gums really doesn't count in this debate.
And remember, most of those who have one of those serious bleeds will survive. That's a lot more than can be said for the stroke group.
The chances of any of us having a stroke is small. Of course it is and the younger and otherwise healthier we are, the risk is even less. But it is a fact that thousands of folk, not on anticoagulants, will die (or worse) from an AF related stroke this year. In comparison, very many fewer will have a life-threatening bleed.
Anticoagulants are free (for over 60s) under the NHS and while warfarin can be a hassle, NOACs couldn't be easier to manage.
Listen to your EP of course but question him too. At the end of the day the decision to take anticoagulants or not should be made by you - not some fellow you hardly know.
Oh dear, sorry if I have upset you but you have misunderstood me. I don't for a moment pretend to know more than your EP about your condition but, if I were you, I would want to know a lot more about my condition than you seem to. That's all I'm saying.
Your EP, if you have correctly quoted him, has thrown out a general statistic that is wrong. Yes, wrong!
If you want to accept it without question, that's entirely up to you but you can't expect to publicise it on this forum and not to be challenged.
I'm sorry if my challenge was upsetting to you. Though I retract none of the facts it conveys, please forgive my sometimes forthright manner.
Just another FACT which you should understand is that in UK we are VERY BAD at anticoagulatiing at risk patients. We are in the bottom two countries in Europe for that and could save over 8000, yes eight thousand serious strokes a year if we could change that. I can make an educated guess which consultant this is but won't.(within two or three anyway). and he doesn't help the movement. As I said once before NICE sadly held back from recommending anticoagulation for all AF patients with the new guidelines last year but there is a growing movement amongst EPs in that direction. WE are all entitled to our opinions and should ALL make up our own minds but only after due consideration of the facts and just as you should not blindly accept any of our opinions , then neither should you take a medics word for it either. Do the maths and make your own choice not somebody elses.
It really didn't seem to me that you were being preached at,as just giving you some facts and figures.I take anti coagulant s and I by have a family history of brain hemorrhage,I think its worth throwing as many questions at your ep as possible. I also think a sense of humour is needed sometimes, I know it must be confusing and also frightening, I'm sure all of us have felt that at sometime or other,but I think the more information we can cram ourselves with the better.Take care.
Classic case of 'If the crocodiles don't get you then the alligators will....' All I am going to add is that if you reach 65 and are not called into your GP s surgery to arrange anticoagulation therapy you should make an appointment yourself!
I'm convinced, wrongly probably, that warfarin is going to kill me. I feel I'm taking poison and I only take it to please other people. It robs me of my sense of wellbeing and affects my enjoyment of life. But I'd rather die from a fatal bleed than have a stroke.
I agree Rellim. Two things terrify me -- alzheimers and stroke. I would rather slip gently away than a lingering living hell. Nobody enjoys taking any drugs unless they are recreational.(joke!!!) but balance is all. Thought-- I think it is the AF which robs you of your well being as without it you wouldn't need warfarin.
It is really, Bob. But I feel I hardly have AF. Everyone else thinks it is worse than I think it is. But it's not how bad it is that counts: it's what it might do next that's worrying.
Much as I would defend your position I think you spoiled it with your last point . In fact the older population get their's free as they don't have to pay for it. This actually adds to the burden of drugs budget and since warfarin has been around a long time and is very cheap the normal prescription charge would have far and away covered it, so the cost to NHS is actually much higher than the cost of the pills.
I really don't want to make HappyJo any less happy but you can't argue with the statistics regarding stroke prevention in UK against other European countries. I agree that it is up to each individual to make their own mind up and have always said that this must be done with the knowledge of all facts. We shouldn't be having a "my specialist is better than your specialist" argument as to be honest an EP whilst the best person for rhythm control is not a specialist in stroke prevention and he or she makes their mind up only on the data they read. AF-A alongside the Stroke Association has been working towards better protection for many years and will continue so to do.
In my lifetime career as an air traffic controller and airspace director I can't recall having much use for 'logistic regression' so I'll give way to your superior knowledge of the subject. I'm sure it's fascinating. I do know however, that our bodies don't metamorphose on the evening of our 65th birthday, suddenly rendering us ready for anticoagulation!
Come on HappyJo, ease up. This is an internet forum on a medical topic not a dating site. It's not a love-in where we are only allowed to tell everyone how wonderful they are. There are issues raised here where opinions will differ - and that certainly occurred today with the comments from Hardjuice. Should I have let those comments stand without response? Well I'm sorry but in my working life I probably wouldn't have made a good social worker. One of life's loveys, I am not. But neither am I aggressive unless you believe that aggression is a characteristic of anyone who doesn't agree with you. I use no threatening or vulgar language, I care deeply for my family and my wife of 42 years has loved every minute of our 'togetherness'. And so have I.
Anonymous? Yes I suppose I am but then aren't we all here except for the few that meet up for a delightful pub lunch from time to time. But so what? If I told you my name, telephone number and shoe size, would that really make any difference?
It's time to move on - there's another day tomorrow - but one final point. We shouldn't challenge medical judgements on this forum? For fear that we might undermine the relationship 'twixt a poster and their clinician? Oh! please HappyJo......you can't really mean that, can you?
As a humble teaching assistant (retired) what I know is that my GP did not pick up on the fact that I had passed my 65th birthday, and as a woman with AF was now advised and entitled to be prescribed anticoagulation. So I went four (extra) years without the treatment I should have had regardless of how long you think I should have had it before.
I was merely encouraging people to be proactive and not rely on their GP!
My friend died yesterday of a pulmonary embolism. She had been to the doctor the day before complaining of severe breathlessness. She was sent home to wait while the doctor arranged some tests. He didn't send her to hospital or suggest A nd E . She was a very assertive and proactive person in the rest of her life but trusted that the doctor knew best so went home to wait. If only she had been more proactive she may still be alive.x
Well that was an experience I post on here to share my story as I thought that what the forum is about
It's clear to me that unless you are taking a bloodthiner ( sorry Bob )
You are less than knowledgeable a sort of inferior AF sufferer one not worthy to post
That's not quite true you can post but expect incoming from the warfarin lovers
AF to me was a life changer and a bit of worry early on but I bought of house off a lady who had just died at 93 and she had AF for 30 years so I took comfort from that no drugs either
I had a Desmond tumour about ten years ago and put my trust in a surgeon to help me she did just that the tumour was half the size of a tennis ball close to my heart it was removed and I've been clear since
So when you find a consultant that is reported to be one of the best then you have to trust them and take his or her advice and hope that he's got your best interests at heart ( not a pun )
There are people on here that offer support and share stories that help one another I am grateful to them
I'm not a shrinking violet by any means for that reason I think it's best I leave the forum /group
I'm doing this as an act of support of my EP who I believe in and sharing his comments for ridicule isn't going to happen
Former plumber, former Royal Marine ,current Husband ,Father and grandfather
Property developer and Landlord oh almost forgot a nice guy
For all those in AF hope your journey is a safe one
AF cure is round the corner an improved vest is made ready to go if the money is found that will pin point beyond doubt the ablation sites in any AF sufferer
Again this could be more bullshit that I'm being fed I'm sure someone wil comment
I hope that you have not left the forum yet. You definitely shouldn't feel you need to do this out of loyalty to your consultant just because he says no and the majority here say yes. Please my notes below and I hope that you follow my logic an explanations.
With anticoagulants there are basically only two options - (1) take them or (2) don't take them. As you have found out your consultant is saying no don't take them and other consultants are saying yes take them. In general terms can it be proved with 100% certainty which camp is right and which is wrong? - NO - there is no absolute definitive answer because everyone is different. In addition different consultants have had vastly different experiences over their career. What is true with all studies and statistical analyses, especially with those relating to people's medical aspects, it is very rarely to be 100% one way or the other. But no matter what the exception can always disprove the rule!!! It appears that the current evidence and thinking by the majority (but not everyone), including comparison with other countries, appears to be that not enough people are taking anticoagulants.
It could be that someone with a CHADS score of 9 decides not to take anticoagulants and for many years they sail along without having a stroke. Similarly someone with a CHADs score of 0 can get a stroke because of AF since AF in itself does not score 1.
Everyone has to make their own choice. In addition a consultant may come to a different conclusion for different patients. If a consultant is 100% for anticoagulants a patient does not have to follow blindly and take them and can decide no. Similarly if a consultant is 100% against them a patient may decide yes I want to take them. In both cases a patient has to weight up the pros and cons and the risks. That is not easy in many cases!!!
Things are then complicated further because of the Warfarin v NOACS (novel anticoagulants). Some consultants are 100% for warfarin, others are 100% NOACs and some sit in the grey area in-between.
As has been said many times people are very different (from a "constitution / cause and effect" point of view) and as has been said here many times AF is a mongrel situation which affects people very differently. It is not like diagnosing a mechanical piece of equipment (eg a car) or an electrical bit of equipment where there is a clearer situation and there are tens of thousand that are all identical which makes fault analysis much easier and consistent (but even then you get rogue fault).
On diagnosis I was immediately told by my GP that I had to go onto anticoagulants but she wanted the consultant EP to decide which one. Initially that was Apixaban but changed to Warfarin so I could have a catheter ablation. Obviously I read up on that and decided that anticoagulation was the best route for ME. Was I influenced by the fact that I have known quite a few people who have had strokes - a handful serious ones and the answer is probably yes but SUBCONCIOUSLY.
That I believe is how it should be AF has been around a long time but is detected more today than before
I have been on Warfarin prior to cardio version a high dose to get me in range
I'm somewhat concerned by over zealous comments that he is wrong and others are right
But your post puts it across sensibly and logically
Drugs have a place and doctors are keen to push them out there but they.dont fix AF
My consultant has discussed at length an ablation but suggests I may not feel much better after and may have to have a couple of those with its associated risks
I'm in permanent AF and I'm pretty unsystematic
My heart went into AF because of my body condition at the time
Like a car stuck in first gear
My consultant takes time and we discuss all options open to me
ATM I'm on no drugs
Yea it's a worry but I don't come on here to increase negative thoughts
Being positive whatever your illness is a must in my view
If you have different thoughts then you should air them and not view your thoughts as negative just because they are opposing what a lot of people have said here re coagulation. As you said "Being positive whatever your illness is a must in my view" is very true. I would add (again) everyone has to make their own choice and this needs to be based on the professionals advice and what we read. There is no perfect answer!!!
At the London Meet this lunchtime your post was mentioned (I hadn't seen it at that point) and a number of people said that they hoped that you did not leave because you / your consultant were in disagreement and were quite happy for you to be offering a different opinion.
In my own case I will be 61 in a few months. I have persistent AF and (flipped back 70 hours after ablation) and until that is sorted (may need 1 or 2 ,more ablations) AND then I am in NSR for a minimum of 3 months then my consultant said he would review / consider me not having to take anticoagulants on a permanent basis (ie for life). That decision could eb 18 months away!!! At the moment I want to keep on them permanently because of the risks of flipping back at some point in the future (assuming that it does get sorted). However someone else might decide the opposite (and I might change my mind anyway).
I forgot to add that the lead coagulation nurse for this area (and also my pharmacist) said it is not the warfarin dose that is important but the actual INR. In my case the dose has been between 3mg, 3.5mg and 4mg and sometimes a mixture of those quantities on different days of the week. For some others they may need 12mg or 13mg per day. We are all different.
Don't leave the forum Keith, please. PeterWh has posted some very sage comments with which I would fully concur. And if you look back to my opening comments in my first response to you, I conceded that some people, those that are prone to bleeds, probably shouldn't be seeking automatic anti-coagulation. I guess your consultant had that in mind when advising you.
My criticism of your first post was simply based on what came across as a 'generalisation' - 1000 people on warfarin have as much chance of dying from a bleed as a stroke - something that frankly is just not correct.
I now understand that your consultant was basing his decision on your specific medical history - and who am I to argue with that?
Stay with us Keith - I'm sure there's a lot more we can agree on but if we don't.... so what? You might be a Marine but you don't know where I live!!!!! lol
Not going to drop into the anti-coag debate but very interested in your comment about the vest?
Is this the one they are currently testing and using in Bordeaux and also in one or two units here in the UK Harefield and others I think.
My understanding, and very happy to have that understanding smashed if I am wrong, is that it's like a vest with many many receptors (like the ones on your ECG but very many more) on it, that once wired up to a computer, allows the EPs to map the path of the electrical impluses very much more accurately, and especially when used during an ablation they can much more precisely pinpoint where to ablate.
BUT and this again is only my understanding, if like me you are long term peristent, then any catheter ablation only has a limited chance of success (in my case around 10%-20% because the impulses have developed such hard wired pathways that making them "jump back" is really hard as they naturally gravitate back to the bad pathways. Add to that the inevitable degree of fibrosis caused by long term AF and again in my understanding this is a wonderful wonderful and great development. But a cure?
Pinpointing the AF sites is great and as you say really helps, but moving them and making the move stick can be another thing, so I think it's a bit early for it to be called a cure.
Be well
Ian
Oh and please don't leave, you contributions are valued
Hardjuice....what a shame you're leaving. Its good to get different views. Keeps everyone on their toes! Sandra
I can't see what the issue is. Hardjuice's EP has said if he cloned him he would be more likely to have a bleed than a clot stroke. A clone is an exact copy, nothing general about it, it's precise , so he was referring to and giving advice to Hardjuice, and he was not giving general advice. That's how I read it, otherwise why say "clone". Why he didn't just simply say you have more chance of a bleed than a clot stroke I can't imagine, rather than converting into 1000 clones!!!
Hardjuice, like any forum, there is a trend to have to stick to a particular view. It's not just this forum. I have the same in that I don't feel it's worth the effort sometimes going maybe against general views, but it's really important that we all do. It's sort of what a forum is all about. Since your post, I have looked more carefully at the stats and Warfarin and Strokes, and I would like to know more about bleeds. So thanks for posting this . My EP says I need Warfarin (and not the new ones), but I'm not a Warfarin lover, I hate it and all other drugs as well.
Regarding the vest there are several around but one in particular made by a former computer whizz kid now into medicine which has pinpointed it down to around 6 burn sites for ablation
He won't release it till the money is right
Again this is just conversational information
So it may be inaccurate but interesting all the same
The cure for AF is surely to find the cause and each person is different
I once asked a cardio surgeon how the father in law was still alive as he had 3 blockages to his heart
It seems the heart used a smaller vein to compensate
Also I'm told you can have a complete heart block and the heart can still produce a beat all be it as low as 20 bpm
Again just hearsay
But based on that I wonder if for whatever reason hearts go into AF to protect themselves and if taking drugs actually prevents the heart from returning to normal
These are thoughts I have no more
I have asthma and have been pushed drugs since diagnosis
I hate them
Any way I now don't take any I taught myself to breath through my nose
You would have to look up nose breathing to learn more
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First Visit To Cardiologist
stopping blood thinner because of risk of falls 
Blood thinners
AF & Edoxaban 60 mg blood thinner
