Confused by stroke risk calculator

[Steve112]

I have been prescribed to start 3mg of warfarin today but just a little confused by the AF stroke risk calculator..my results come back as 0% risk and recommend no treatment or asprin... I really do not want to take warfarin because there are to many factors to consider..my question is what calculator do specialist use when considering warfarin.

[rosyG]

Hi,

Asprin is not now used- the best measure is on the AFA website and tests your Chads Vasc 2 score

If you want to give a little more information about your condition I think the experienced volunteers and others will be able to help

[Steve112 in reply to rosyG]

Hi Rosy I feel no symptoms at all I had a knee op private and it was discovered whilst under I had AF I went to the heart specialist again private and was told my heart was back in normal rythm and advised to take an asprin every day..then 6 months later I needed another knee op this time I decided to go NHS I mentioned about my previous episode of AF and I was given a ECG this again showed I was in AF and needed to see an NHS heart specialist who recommended I take 3.75mg bisoprolol each day then perscibed warfarin 3mg daily..I am 58 normal good blood pressure and as I say I feel no symptoms whatsoever my pulse is 65- 75 I filled out the stroke risk calculator and it returned 0% risk...From the information you’re provided, your risk of stroke over the next 12 months is 0%. Your personal risk of stroke is 0 times higher than the average risk of stroke in the UK.

The risk of stroke in patients with AF can be managed very effectively with commonly used treatments.

To make treatment decisions, doctors use two scoring systems to calculate stroke risk in patients with AF: CHADS2 and CHA2DS2VASc.

For more information on what these numbers mean, and on how doctors use the scores to make treatment decisions, please click on the link below. Please use this report in discussion with your doctor.

[rosyG in reply to Steve112]

Its very difficult as if you were a few years older you would have an extra point for your age- and that might make it easier to decide I think they want to put you on Warfarin as it seems you are in AF a lot of the time - just you don't have symptoms, It's a difficult decision for you but it's best to read about what happens when you are in AF as clots can form, because the blood is not passing swiftly through your heart as it should.If the clots break away they can cause a stroke and unfortunately AF related strokes are a lot worse that some other strokes.

If you are worried about Warfarin, it has been used for many years- there are restrictions on , for example, alcohol amounts, and some diet restrictions, but otherwise it is not a problem. When your INR is stable, you might want to start self testing, with your clinic's approval, and that can free you a lot for travel and other activities as you don't then have to attend appointments- also you can check more frequently to make sure you stay in range.

Do let us know how you get on

[Hidden in reply to Steve112]

Thanks for the info could you please put the link onto your post for me, as I have discussed with both Cardiologist and GP and no anti coagulant is recommended however I do use herbs (from my garden and supermarket) every day to be on the safe side and include asprin every 2nd day. My Chads score is 1 apparently. Do they add the two scores together?

[Susiebelle in reply to Hidden]

See an electrophysiologist.

I was diagnosed with AF 6 years ago and just over 5 years ago had a stroke.

Question and read everything.

[BobD Volunteer]

Steve, Firstly forget % risk as this is not what the score system gives. To clarify , if you have AF then you are five times more likely to have a stroke than somebody who doesn't FACT. The reasons have been explained above. Aspirin is no longer recommended for primary stroke prevention in AF. Fact.

You can always stop taking Warfarin but you can't undo a stroke FACT. 80% of the worst and least recoverable strokes are caused by AF. There are other anti-coagulants authorised by NHS for use by AF patients. FACT.

Millions of people throughout the world take Warfarin with little or no problems. FACT. You are playing Russian Roulette if you don't take anticoagulation if recommended by your cardiologist. Opinion.

I would also say that it is important to make Warfarin fit into your life rather than change you life to fit Warfarin. Apart form a very few no no foods, not binging on anything high in vitamin K and taking alcohol in moderation many of us carry on as normal and forget about the stuff.

Stay well

Bob

[Hidden in reply to BobD]

Terrific post Bob, I didn't know that 80% of bad strokes were AF related but I had sort of worked out that it must be very high. Says it all really.

Koll

[Susiebelle in reply to BobD]

I absolutely agree.

[Beancounter Volunteer]

Hi Steve

The problem with all these measures is that they are a little like light switches on or off, but real life has dimmer switches with all shades in between.

If I remember you are late 50s, and at 60 "Switch" score goes up by one, but the truth is that the risk has been building until the CHADSVACS recognises it.

At zero the recommendation is as you say no anti-coagulant (Not aspirin ever doesn't work)

At One it's your choice, and at Two definite anti-coagulation.

Your cardio is trying to protect you from what we know is a 5 times more likely risk of stroke with AF, and the bad news is that this is the worst form of stroke, AF strokes are much more likely to be the very worst kind.

I was in your position, 24 months ago I scored zero (I now score one) but weighing up all the risks and talking it over with my cardio I chose to be anti-coagulated. Pfaffed around for a few weeks with blood tests and warfarin, and now don't even think about it, just pop the pillls every day.

Warfarin really is a non event for most people, as Bob says don't binge on anything, and let warfarin be adjusted to your diet not your diet to warfarin. It's a really benign drug for most people with no real challenges at all. And of course there are alternatives, such as the newer anti-coagulants.

Be well

Ian

[Hidden]

I've always had a CHADS score of zero, and still have. My EP put me on anti-coags (originally aspirin, now Warfarin) 12 years ago. That was even though I had zero symptoms for 8 years after my first ablation. I know that the way my ticker acts sometimes that it could cause pools of blood to form. All CHADS would do for me is to tell me I have a problem when it was too late. I wouldn't consider not being anti-coagulated in my case.

Koll

[Steve112]

Many thanks to you all for you advice and knowledge it really is a help,people keep telling me read all you can as knowledge is key to the condition, one of my main concerns with taking warfarin is I usually spend the winter months in sunnier climbs and insect /mosquito bites are to be avoided, and if anyone's gonna get bitten its me....hence my trying anything but warfarin....do any of the other anticoags have similar issues I am keen to as you say make warfarin fit in with me.

[rosyG]

The AFA site has good information about the alternatives to warfarin but, (and please correct me anyone if you have bled after a midge bite), I would be very surprised if you would have a problem because of mosqito bites. ( i am not medically trained!!)

What you might find is that it's more convenient to self test if you are abroad, once you are signed off to do so by the anti-coagulation clinic. The machine needed cost £300 but it is money very well spent as it means you can check your range is correct-

The other thing to say is that NICE guidance now is that patient preference must be considered so it is wise to look at all the possible anti-coagulants so you make an informed choice. Do read the information on the AF website as some of the anti-coagulants suit individuals more than others ( things like if you are inclined to have gastro-intestinal bleeding problems for example)

Hope you get this sorted out !! best wishes

[BobD Volunteer in reply to rosyG]

Just think positively that the little blighters will die after biting you. LOL I've been on the stuff for years and often get bites and not just from mossies. I think one must understand that the very bites contain an anticoagulant so that the insects can draw the blood they are seeking. That is one of the things that make you itch.

Bob

[Offcut]

I am doing a home study course on the heart and its disorders and this is a transcript from it

Thrombotic strokes can be caused in a number of ways. If an atherosclerotic lesion in an artery supplying the brain fissures, it can cause a thrombus to form, blocking the blood vessel, so part of the brain becomes short of blood. What can also happen is that the atherosclerotic lesion fissures, a thrombus forms and then breaks off, and this travelling thrombus or embolus will move downstream, and it will lodge in a smaller blood vessel, blocking that blood vessel. Another way that they can form is when you get something called atrial fibrillation, and that's when the heart is beating very fast, but ineffectively, so the atria of the heart quiver.

Now, this means that blood in the atria can stay there for longer, and a thrombus can form. This can be swept as an embolus through the heart into the aorta and then up into a brain artery and lodge there and block it, so atrial fibrillation is a cause of strokes, and that's why it's got to be treated.

Haemorrhagic strokes are caused when an artery bursts, and this can be an artery inside the brain, which is called an intracerebral haemorrhage, but can be an artery surrounding the brain. These are called subarachnoid haemorrhages, which get bleeding into the cerebrospinal fluid. The prognosis of haemorrhagic strokes is worse than thrombotic strokes, so, though they don't cause all that many strokes in the UK, they're actually more dangerous.

There's something known as transient ischemic attacks or TIAs, which are sometimes known as mini-strokes. Now, this is when you may get showers of aggregated platelets that block the flow of blood to the brain for a short time, and they cause symptoms lasting just a few minutes normally, and there may be loss of brain function, so, for instance, you may feel dizzy. Now, these don't cause any lasting damage, but very important, because if you're getting transient ischemic attacks, it means you're much more likely to get a full-blown stroke, so if you're getting them, you must see your doctor and get some treatment. ©University of Reading 2014

[Hidden]

I wad in Madeira last year and got bitten lots and didn't have a problem re bleeding. Had some bites go a bit funny (sceptic?) but no bleed problem. I also got a few bites on Northern Spain last week, again no problem.

And I'm outdoors most of my life working with animals and get bitten over here too (UK). Again no problem, except for the little blighters, if I manage to squash them

Koll

[Treffynnon]

Steve, as usual I think there is more to the stats than meets the eye at first glance! My understanding is that yes, you are possibly five times more likely to have a stroke with AF. The problem is that the bulk of the data set (currently) is for people who are over 70 because that's where most of the strokes occur and in that age range many people have strokes that don't know they have AF. This is why age is important in the Chads Vasc2 scoring. I am a bit older than you, 61, and have paroxysmal AF that generally fixes itself in under 36 hours and also have a score of 0%. I take flecainide but no beta-blockers. My resting pulse is 66 and blood pressure is 120/80 and I am reasonably fit. I have had much longer periods of AF and have been cardioverted twice, the last being almost three years ago.

In agreement with my EP, I don't anti-coagulate, (I did pre and post cardioversion) , but assume that at some stage I will. I also have an AliveCor monitor on my phone which helps me to check all the other random flutterings and ectopics that occur! As long as I am seeing a p wave on each beat I'm not in AF which I find reassuring and don't need to anti-coagulate. If you are in AF and don't know it a monitor could be very helpful.

As many have said in this forum, there are really no right answers, you have to come to your own conclusions about risk/management/quality of life, hopefully in conjunction with an EP/cardiologist that you trust.

Living with this ain't easy but this forum certainly helps to make more informed choices.

Best

Steve

[Steve112 in reply to Treffynnon]

Many thanks for the reply...today I saw my gp and she seems to think I am back in normal rythm and has arranged an ECG next week my blood pressure was fine and the confusion and choices just isn't helping me making an informed choice... I am very interested in the alive cor monitor I will be reading up on this one, being in and out of AF just isn't helping but I guess that's just how it is...

[steve60]

Hi Steve (what is it about we Steve's), I work in risk assessment and frankly a 0 risk is exactly that, if you are under 60 take the asprin and get on with your life, no matter what they all say on here, Warfarin IS a life changing drug. If aged over 60 you still have AF then like myself our score would go to 1, it is then that we have decisions to make.

[steve60]

Hi Steve (what is it about we Steve's), I work in risk assessment and frankly a 0 risk is exactly that, if you are under 60 take the asprin and get on with your life, no matter what they all say on here, Warfarin IS a life changing drug. If aged over 60 you still have AF then like myself our score would go to 1, it is then that we have decisions to make.

[Steve112]

My INR remains at 1 so my dose of warfarin has been doubled and I feel like crap due to dosage...tomorrow I have another ecg as my doctor feels I am back in normal rythm if I am will the warfarin continue I am under 60 no side effects and the warfarin is dragging me down its all about risk I know the 5 times equation ...but five times what i don't smoke or drink and not overweight and quite fit so weighing up all options and how I feel what do I do....

[Susiebelle]

Hi - 5 years ago I had a stroke - they had taken me off warfarin because I was in NSR - but in and out of AF.

I too was a low risk score -, err on the side of caution.