Risk of bleed test

[northernsoul1]

I'm aware that anti coagulants should be assessed against the likelihood of bleeding. I'm aware of all the various stroke risk tests but how is the risk of bleeding tested other than if you've previously had a bleed? The decision to anti coagulate seems a little one sided. Any thoughts?

[Paddinton]

Anti coagulants are prescribed if you are at risk of a stroke from a clot. So anything that might form a clot, which includes tachycardia in all its forms. If you are at risk of a stroke from a bleed in the brain, anti coagulants are the last thing you want.

[Rellim296]

I didn't like the sound of anticoagulation one bit and when a cardiologist told me when I was 66 with a CHADs score of 3 that I should be taking one I was not pleased. The enhanced risk of bleeding bothered me, as for just a few it will turn out not to have been a good idea. I'm not a great conformist and am often in the minority group if there's a 85% / 15% divide. I sometimes find myself in the under 1% bracket. My blood group is AB negative which is about 0.6% of the UK population.

There's no history of stroke in the under 80s in my family, though two of my aunts had mild strokes when very old. Two relatives have had brain haemorrhages, one of them swiftly fatal at age 48.

I took the view, eventually, that I would prefer to bleed to death than live (or exist) severely debilitated following a major stroke. Embarking on anticoagulation made me feel extremely vulnerable for quite a long time. There was no good way forward: I was damned if I did and damned if I didn't and every tablet taken felt like a nail in the coffin. Catastrophe and death were very imminent and venturing outside the front door was a challenge. But the years rolled by and nothing dire happened. Now that I'm older and more at risk, I've become quite comfortable and the unwelcome news that people with blood group AB are the most likely to have some cardiac event is the icing on the anticoagulation cake.

[Hidden in reply to Rellim296]

I told my EP that I was worried about a brain bleed, so he put me on Apixaban as she said this had the lowest risk. That was a year or two ago, don't know whether this is still current?

Koll

[momist]

The risk of a bleed is real, but of course the bleed that follows a fall may be the result of a fall because of a TIA (mini stroke) and so we go round in circles with this. It's about _balancing_ risk, and to do that well you also need to be an expert in risk as well as in the medicine aspects.

[BobD Volunteer]

HASBLED is not so much a score as an aide memoir of things to consider and deal with at the time of anticoagulation.

I agree that the system we currently have (CHADS2VASC) is far from perfect but it is the best we have available right now. There is work going on on gene analysis to see if a better predictor is possible but some way off yet.

The old saying is you can always stop anticoagulation but you CAN'T UNDO A STROKE. Remember also that AF related strokes are the least recoverable and often fatal because the clots formed within the heart are larger and able to do more damage.

Needs a lot of thought! Not to me.

[Hidden in reply to BobD]

Hi Bob, interesting you mention gene research. I have Factor V Leiden heterogenous (gene incorrect with a tendency to clot) and I often think this should be taken into account re anticoagulants - evidently around 15% of the population have it, most unwittingly. I only found out myself 16 years ago when as a fit and healthy youngster at 47 I got a blood clot in my leg from a long car journey and they took a blood test to check.

I have mentioned this to my cardiologist re a possible increase in my CHADS score but he brushed it off quickly; maybe because he knows I have made lifestyle changes including very active and am very anti-pills. As an aside with the medics and my Naturopath, I am almost am at a stage when I am self-medicating - which is a bit scary but I guess is a natural progression after you have learnt a lot and know your own body/wishes the best.

Enjoy the sunshine today and thank you for all your helpful posts!

[RoyM in reply to BobD]

Can someone explain...my HASSLED score is 1 (age over 65) the result says HIGH RISK yet if I tick other boxes I. e. Raised blood pressure or drink to excess my risk score rises and the risk becomes moderate. Don't understand am I doing something wrong.......Obviously I am

[momist in reply to RoyM]

I wish I understood this too. It seems the HASBLED thing only works for those who get their Labile INR level tested. i.e. already on Warfarin? I tried to do my own score, and met the same problem as you regardless of which INR box I ticked. I don't understand it either.

[RoyM in reply to momist]

Well at least I am not on my own understanding how it works.. if I drink more the risk is less.....interesting, well it's off to the pub for me lol

[northernsoul1]

Thanks for all your replies. I'm currently on rivoroxaban and have no thoughts about stopping but interested in the issue of bleeding as it has never been mentioned to me

[resmqme1065]

I suppose most of us will worry about beginning a blood thinner and I wasn't without concern. However there really isn't much to be concerned about. I am more careful when moving around and I have suffered several minor injuries without a major bleeding episode!

I do find it takes longer for my cuts and scratches to heal. While investigating antibiotic ointments, I came across one that has other natual healing ingredients in it as well. It is a favorite of triathalon athletes. It is called Brave Soldier. I purchased on Amazon and it is superior to other ointments, healing in less time for me.

I would not be a good stroke survivor and would despise the burden it would place upon my family. I have no qualms with eloquis.

Judy

[Hidden]

Bleed risk is determined by whether there is a physical condition or illness. I have a haemagioma - an enlarged group of blood cells - on my tongue that carries a risk of bleeding to death if I bit my tongue in an accident. In late 2014 an EP gave me a CHADVASC score of 1 as I was over 65 and had a very healthy lifestyle and, specifically recommended that I did not take an anticoagulant because of the bleed risk. In July 2016 I had a full stroke followed a month later by another bleed. It left me blind on the right-hand side so my clean licence of 50 years has been revoked and I would say that my "usual self" didn't return until five weeks ago. I've been fortunate. I was also fortunate to make a video with production company Nice Biscuits, that will be available later this year to clinicians in the UK and USA that tells my story. As I mention in that video, I wish that I'd taken an anticoagulant. It''s easy to say as despite accidents on a scooter, in a car and falling down banks whilst Orienteering I've never bitten my tongue. Now partially blind I've adapted to walking around busy supermarkets but I've lost my independence, my wife has to do all of the driving and, this year we won't be going to her beloved North Cornwall for a holiday. It might sound like I'm complaining, I'm not, I've been very lucky, but think it through very carefully if you have a stroke risk and a bleed risk.

[sann in reply to Hidden]

Hello Jon boy, my oh my so you have become partially blind, well a similar thing happened to me, I have just become blind in one eye through a bot clot behind my eye, and I know just how you feel, my husband too has to do the driving, I just feel as though everything has gone and what do I do next. No one knows what a totally terrible feeling it is, as I'm sure you agree. I have been taken anti coags for some time now, so I'm just scared now as to what will happen next. Nice to know of someone in the same situation , please keep in touch. Sann

[Hidden in reply to sann]

Hi Sann;

don't give up. Have you been told by DVLA that you can't drive? The central part of the eye test is whether your horizontal field of view is 120 degrees. Our daughter has defective rods and cones in one eye from birth - she is effectively blind in one eye - and the DVLA are content that she can drive. My vision loss is in the brain. I've lost the vision on the right hand side - 50% - of each eye. It''s a very small chance as my vision is the same as when I had the stroke, but they may allow me to take an assessment at a disability driving centre at least 12 months after my sight didn't meet the criteria. Keep in touch so that we can chat about the DVLA test.

John

[momist]

Wow. Thanks for your stories resqme and John-Boy. I am yet to be seen by the cardiac people, but was wondering about the advisability of anti-coagulation. I'm an active DiYer and hobby hand tool woodworker, so I injure myself quite frequently. I'm currently nursing a sore thumb (hammer!), grazed knuckle, a splinter and three minor cuts on my fingers. I am also covered in bruises from bumping into things in my over stuffed workshop. No, I'm not accident prone, but perhaps careless. I tend to ignore minor injuries, and wondered how anticoagulation would affect this.

[Hidden in reply to momist]

It's ironic with my story that I'm the secretary of a volunteer nature conservation group in Bristol - Friends of Lamplighter's Marsh - and when I'm clearing scrub in the Council owned nature reserve, I use a razor sharp billhook and a bow saw with a rip blade. Although I wear Kevlar sleeves and anti-slash gloves, either implement would sever a finger. The Council's health and safety rep wanted to ban me from the nature reserve, but thanks to the Council's Equalities and insurance departments that has been overruled. The Council have since trained me to use a commercial strimmer and a pole cutter - a hedgecutter on steroids - and I'm trying to persuade them to train me with a brushcutter. My anticoagulant is Pradaxa that has a reversing agent called Praxbind that would be administered in hospital in the event of a severe bleed: I've yet to check if my local hospital stocks it. Following the stroke I was prescribed Apixaban but four weeks after the stroke I had a bleed in my brain. I can't take Rivaroxaban as I had a rare reaction to Dronedarone and Amiodarone that caused pulmonary toxicity and I was close to death. That left Pradaxa and was prescribed by my Consultant Neurologist (I owe her much).

After my brush with the grim reaper with pulmonary toxicity, there was a vague mention of Warfarin but not NOACs. Back in the day when I had a diagnosed inguinal hernia the CCG would only fund a truss. A private operation revealed two inguinal hernias and a potentially life-threatening occult femoral hernia. The point here is that due to CCG funding restrictions in general I was being vaguely steered towards Warfarin at £10 per year, whereas I believe that my Pradaxa costs around £600 a year.

Anyone on an anticoagulant may need to go to A&E if they fall and particularly if they hit their head. I used to cycle so a fall would have been problematic. That was solved by some kind soul who stole the bike. None of that has stopped my DIY, gardening or doing scrub clearance. We may only have one life - my lovely ex-yoga teacher tells me we have many - so let's live with our limitations and imperfections and enjoy it.

Namaste to all.

John

[mlaporte]

Yes, it concerns me, the push to anticoagulant. There is big money in these drugs for big pharma. Once the criteria is established, here in the states, a doctor has to cover himself from being sued. To add 1 point for being a woman to the Chadvasc score earned millions for big pharma. From what I have read, the UK is now saying being a woman doesn't count. I am 10 months post ablation, no AFIB, yet my doctor would have me taking an anticoagulant. Doesn't make sense to me. All I can say, is do your own research and make intelligent informed decisions based on your risk factors.

[Rellim296 in reply to mlaporte]

I think it's only if you are under 65 that being a woman doesn't count.

If you are told you should be anticoagulated and you decide you'd rather not, it can be hard to find peace of mind.