My risk of Stroke is 3-5x the "normal" Risk. How can I find out what my risk would be, without AF?

The cardiologist told me that I had a "very small" increased risk of stroke. However, as I have discovered it could be 5x the normal persons risk, I need to know what that risk was! For example, if my pre-AF risk was 1 person in 1,000,000 then the increase is, indeed negligible. However, if it was 1 in 20, the increase in risk is enormous! Is there anywhere where I can go to find my pre-AF risk? I can't decide if I need anticoagulation as I score 1 on CHADS2, but I am very overweight, and take a large number of other drugs, as I have a chronic pain disorder and Osteoarthritis! Anyone know a link?

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  • Chads2 is out of date. ChadsVasc is current best thinking. There is a Nice prepared Patients Decision Aid which explains all this with the sort of numbers that you want to read. My guess is that should you do ChadsVasc then you will be at least 2 which is yes for anticoagulation. Check out the main AFA website for details. To put things in perspective we could save at least 7000 yes seven thousand strokes a year if all at risk patients were on anticoagulants. I have a feeling the real figure for "normal" people is something like 3 per thousand so you become one of fifteen per thousand.

    Hope that helps,


  • The patient decision making tool shows the risk for a year but of course AF may well last longer than that so it is an ongoing risk. One good cardiologist pointed this out but he also said it is hard to advise when you have a low Chadsvasc score- easier when it's higher with more risk factors.

    If your cardiologist is good, then be advised by him/her as they will know your individual profile.

    I know it's hard, but it would be very wise to try and lose some weight- I find this very difficult!- if you look at the Care AF website ( clink on the link on the first page of the AFA website- there are some very useful ideas for a healthy heart diet and to lose weight you can just moderate the carbohydrates part of it.

    People debate whether weight is linked to AF but usually agree that losing weight reduces strain on your heart =- which is sensible when you heart has strain imposed by AF

  • I have noticed that people talk about seeing their cardiologist as if it is a frequent occurrence. I have seen one three times, once when AF was suspected, once after it was proven, and once when I was admitted, after a bout of flu had prevented me from keeping the pills (or anything!) down, and I had a longer than normal attack. That was over two years ago, and I have been taking Flecainide and asprin ever since! My GP has not had any instructions to take over, so I am left, in limbo. I once rang the department secretary, and she told me that I would be recalled if and when it was necessary, and not to worry as it could bring on an attack of AF. DO you think I should be creating a fuss, or is this normal if the pills work?

  • I see a cardiologist once a year as I have a congenital heart condition which has been corrected by surgery in the past couple of years. My GP is managing my AF under advice from the cardiologist. The relationship between my AF and the underlying heart condition is complicated and a bit chicken-and-egg I think!

  • I'm pleased that your GP is on board. Mine only knows that I have AF because I told him so!! He referred me to the hospital, but got no feedback after the letter telling him that I had been put on medication. He prescribes the medication, because that is what the hospital gave me, and that is that. When I asked him about anticoagulation, he asked if the hospital wasn't dealing... He ordered some bloods, and an ECG, and I'm awaiting the results, but we have never, previously, had any discussion.

  • Do you get copies of the correspondence between hospital and GP? The hospital that I attend in London is very good about this and I see all the test results, though don't get an ECG or echocardiogram print out. When I was under the care of a local hospital, I didn't get any direct feedback. However, they seem to have changed their procedure now.

  • There are no corres. on record since I saw the Drs. as an in-patient following a severe attack! And that was a different consultants team!!

  • Hm, my CHADSVASC is a whole 1, because I am female! However, it takes no account of my obesity, nor does it take account of the medications I have to take daily. I may be able to let the drugs go by, as none of them quote an increase in stroke risk, but I have been lectured all my life to lose weight, as it increases my risk of heart attack and stroke! Is there any calculator that includes this risk, and any other relevant data?

  • I don't think so but you are fortunate that you can actually do something about the weight risk- I wouldn't like to comment on the other medications you have but would not expect them to cause stroke-or why would they be prescribed?

    Hoping you can get some help re the weight as it's easier if you have some support

  • Alas, I have tried to lose weight all my adult life. I have tried - and stuck with- every diet known, and the one thing I know is that most of them don't work for the truly obese. I eat about 800-1000 cals a day, and am not losing! Last year I tried restricting things as much as possible by eating only one thing - natural, live Yoghurt!. I did 1 month on, and one off, and lost 10kg - a real achievement, but like a tenner off a Rolls Royce, Very nice, but not a lot in real terms! I am willing to try it again, for the rest of this year, but my doctor, and the practice Nurse, threw their hands up in horror!

  • One should be very aware that it is all too easy to allow a low Chadsvasc score to ignore the fact that you have AF, the most powerful single risk factor for suffering a deadly or debilitating stroke. If your cardiologist can share with you some really serious reasons why you shouldn't be properly protected then fine but otherwise, it's a no-brainer! Anticoagulate Now! But of course, it's entirely up to you....

  • Chads2vasc isn't ignoring AF, it was designed FOR people with AF.

    Taking Warfarin reduces your risk of ischaemic stroke, but it increases your risk of haemorrhagic stroke. In order to minimise your risk overall it is important to balance these two risks, that is what the Chads2vasc system does. If your score is too low to justify Warfarin that means that Warfarin will increase your risk of haemorrhagic stroke more than it reduces the risk of ischaemic stroke. People are not doing themselves a favour by taking anticoagulants indiscriminately if their score says they're better off without it.

    From the latest ESC guidelines:

    "Antithrombotic therapy is not recommended in patients with AF (irrespective of gender) who are aged <65 and lone AF (i.e. truly ‘low-risk’), as the latter have very low absolute event rates."

  • It's not quite as simple as that ectopic. Whatever one's Chads2vasc score, the risk of stroke is between 5x and 9x greater for someone with AF and with an INR of 1 (ie not on warfarin). Excellent protection from stroke is afforded with an INR of between 2.5 and 3.5. (ie effective warfarin therapy). The bleeding risk for most of us only kicks in when INR is allowed to drift up to 4.5 and above. (poor warfarin therapy.) An AF related stroke (not TIA) is usually deadly or at best permanently disabling. Bleeds, on the other hand, are usually survived with a full recovery. (Other anticoagulants are available, but I can't use INR to make my point with those.) You're right when you talk about balancing the risks but, in this case, 'balance' does not rest where we would normally expect to find it, in the middle.

    Chads2vasc may well calculate stroke risk but I'm afraid the lowest score is too high for most of us to be without anticoagulation. Unless, of course, as I said earlier, there are seriously good reasons why you shouldn't be taking them.

    But of course, the decision is entirely yours.......

  • That's not what the European Society of Cardiology are saying. I don't deny that your stroke risk is always higher with AF, but the point about a low chads2vasc score is that the risk from AF is lower than the risk from Warfarin. Going on Warfarin under those circumstances would be self defeating. If it were always safer to go onto Warfarin there would have been no point in devising the chads2vasc system in the first place.

  • All we can do ectopic is look at the facts and statistics and make our own minds up. As far as I'm concerned a 5x stroke risk (Chads2vasc score of 0 or 1) is sufficient for me to take to the tried and tested life-safer that is warfarin. The ESC has 70,000 members and they won't all agree with the Society guidance on this single issue. How can it ever be sensible (for most of us) to hold off on anticoagulation until a TIA, or worse, bumps up our score? I am delightfully confident that keeping my INR in therapeutic range protects me nicely and puts me at very little risk of bleeds.

    Here's another fact that is hugely relevant. The majority of AF related strokes happen to those who are either undiagnosed or those with low Chads2vasc scores - many of whom were advised that they didn't need anticoagulation. Paradoxically therefore, having a low score can put you at greater risk of stroke than the safely anticoagulated high scorer. Now that wasn't intended, was it?

  • Obesity carries its own increased risk of stroke as hypertension and insulin resistance are usually part of the package that comes with increased weight, and increased abdominal girth. A high body mass index (BMI) carries significantly more risk of heart attack and stroke even without AF to confound it. It sounds like you have taken some dire measures in an attempt to lose weight. A diet rich in vegetables and fruit, avoiding processed foods and sugary foods along with physical activity is generally the best route and those things can actually improve your osteoarthritis. But if that approach fails, here in the US, depending on just how overweight you are, your next option would likely be having gastric bypass surgery to help you to lower all of your risk factors. I certainly wish you good luck in reducing your risks however you can do it.

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