Anticoagulants and AF

Informative but controversial article about anticoagulants and AF.

dailym.ai/2venvh1

Pete

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  • Mmmmmm ...... does this mean that, in some cases, HASBLED scores are not being calculated before an anticoagulant is prescribed?

    At the beginning of this year I was prescribed a NOAC whilst in hospital briefly (not by a cardiologist). I did ask if my HASBLED score had been calculated and was told, "We don't take too much notice of that nowadays." (or words to that effect).

    Subsequently I asked my GP to do the calculation. I must admit I was concerned at the reply I received in hospital.

  • There is no mention of the CHADS or HASBLED scoring systems or the NICE guidelines in the article.

    I was not encouraged to take anticoagulants by my GP even though she worked out I had a CHADS score of 3, the choice she said must be mine .I was asked if I had access to the internet , given the details of CHADS and HASBLED and told to go and look it up then let her know what I decided.

    I was rather annoyed actually considering I waited 6 months to get someone to diagnose and discuss my AF that no one had bothered to tell me I was at risk of a stroke without anti coagulation.

  • Yes. I read the whole article and it was the fact that no mention was made of the HASBLED scoring system (nor of CHAD or NICE guidelines) that led me to ask my opening question - see above.

    I had wondered how common my own experience was. The article seems to suggest that it happens quite frequently.

  • We're in the US. My wife was given xarelto a year ago after being diagnosed with afib. She was never advised about the risk of bleeding, and we only discovered it after her hemoglobin had dropped from 12 to close to 6 in three months. Even that was a casual finding from a blood test she took preparatory to a TEE. She needed 2 units of blood and was taken off anticoagulants because the bleeding risk exceeded the stroke risk. Since then she's had a couple of endoscopic procedures where they identified and cautherized a few suspicious spots in her upper GI tract that may have been the bleeding source. She is now on eliquis because it's supposed to have a slightly lower bleeding risk than xarelto, and is having her hemoglobin tested weekly for a month. We're anxiously awaiting results of the first test to see if the bleeding issue has been fixed. The lesson we learned from this is that everyone should have their hemoglobin tested at least once when they are first put on blood thinners, to verify they are not in the bleeding category. Without such a test there may be a slow but dangerous bleed that may not be detected until it's too late. My wife's only symptom from the bleeding was tiredness, which we incorrectly assumed was from iron deficiency anemia.

  • Absolutely agree. Ongoing monitoring is essential I think. Unfortunately very few primary care (GP for U.K.) seem to offer that as a service.

    I have monthly bloods drawn, not only for the A/ACs, my practice recommended 6 monthly tests for A/C monitoring.

  • I was on Warfarin probably 22-25 years ago and my then EP took me off it as he said that at my age then (45) was at a greater risk taking it compared with not taking it.

    When I moved house 12 years ago I was referred to a new EP who suggested ablation.

    Because of having the ablation (and the further subsequent ablations) I was put back onto Warfarin. Warfarin seems to be the preferred anticoagulant at my hospital.

    I have now been on Warfarin for 10 years and during that time survived both severing an artery in my hand (not taken lightly) and also 2 falls when I hit my head.

    As will be appreciated these incidents were very very worrying for both my family and I.

    Returning to the article I only posted the link to stimulate discussion. In my view we are all different and the suitability of a particular treatment checked and double checked.

    Additionally we should all treat newspaper articles with caution and only use them to add to other knowledge or opinions.

    Pete

  • My doctor thinks anticoagulants are not always necessary if you have Afib until you reach 75 . We are all different and need to question all medications we put in our body.

  • And in your 80's you are more likely to have a life threatening bleed as a neighbour and a friends brother had. My GP and the INR nurses were concerned about my risks from Warfarin with a history of stomach ulcers and hypertension. I didn't like Warfarin and NOACs were contra indicated due to my heart valve replacement.

  • And that would be why a proper assessment and a dialogue should happen. Everyone is individual.

  • [Quote = Slattery My doctor thinks anticoagulants are not always necessary if you have Afib until you reach 75 ]

    Hi Slattery :-) The protocol for offering anticoagulant as set out in the the N.I.C.E guidelines removes the need for a doctor to make an independent decision with the onus being put on the informed patient to accept or decline the offer of anti coagulation...

    [Quote=NICE] Quality statement.

    Adults with non‑valvular atrial fibrillation and a CHA2DS2-VASC stroke risk score of 2 or above are offered anticoagulation]

    nice.org.uk/guidance/qs93/c...

  • How right you are.

    What is worrying is how many different views different doctors have and inplement, yet as you say in the UK there are N.I.C.E recommendations to follow.

    Us poor mortals are treading a hazardous path are we not.

    I know that for me if I had not taken control of my own condition things would be so different.

    Sadly not everyone who suffers our condition is able to speak up for themselves!!

    Pete

  • There is another theory that the shape of your left atrial appendage is a factor. With certain shapes clots will not form in it. Presumably it only needs a scan to find out.

  • Out of interest I discussed HASBLED with a leading EP and his comment was that HASBLED was an aide memoir of things to address and try and sort out before anticoagulation rather than a scoring system.

  • Sounds about right Bob

  • My GP told me that's is should stay on anti coagulation for the rest of my life (I'm 52) whether or. It the ablation was successful and said that it depended how blasé I felt about stroke risk. I am worried having read the article about risk of bleeds, I score 0 on all indicators. Always seems to be something to worry about in terms of risks associated with not taking medication versus risks associated with taking medication. I am now totally confused and unfortunately I know I will just constantly fret about this.

    T

  • I've had AF 20 odd years. I was on aspirin up to about 4 years ago. I'm on warfarin, I self test with my own coaguchek meter and wouldn't be without warfarin. My AF is now persistent, there all the time, but most of the time I can't feel it. My heart rate is "normal", about seventy at rest, so I'm not on any medication except warfarin.

    Years ago, and Paper65 you are too young to remember, there was a TV advert by the British Insurance Association which featured Fred and his family. "Get the full strength of the insurance companies around you!" was the tagline. That's how I feel about Warfarin. It's helping to prevent strokes. The original article in the British Journal of General Practice was basically saying, as far as I can tell from its full title (see my comment below), if you have a medical condition where you're likely to bleed, like an ulcer, or if you're taking other medications which are known to interact with anticoagulants, then taking an anticoagulant is not a good idea. It believes that about 38,000 patients in the UK have been wrongly prescribed anti-coagulants. They base that estimate on a study of only 645 General Practices in the UK. The British Medical Association estimate that there are 9,574 General Practices in the UK, so if that 38,000 figure is right, and if there are spread evenly across all general practices, that's about 4 patients per General Practice. Something GPs should be aware of, but not something we should worry about.

  • The practice I go to has just over 300 patients on Warfarin. Testing is allocated at eight minutes per patient attending INR checks. Some housebound ones self test and have an appointed time to phone in their results. Basically it takes up two days of nursing time a week.

  • Mine still send the blood to the hospital for testing whereas there is a gadget that provides an instant answer.

    They tell me that this is on cost grounds. Ridiculous in my view and is actually all to do with who's budget pays.

    Pete

  • In Brighton and some other places pharmacies do the testing and send the blood sample to the hospital. The patient gets a phone call or text the next day with his dosage.

  • AND get FBCs, liver and kidney functions done every 6 months.

  • Thank you for your post. It makes me feel a little bit better about having to take the warfarin forever. I too used to take aspirin, but now they say studies have found taking aspirin will not prevent a stroke from happening, that the new blood thinners or warfarin is the only way to go. I have always had good blood pressure, good heart rate, never a blood clot. But I do have one 'leaky' valve and permanent AFib. I do still get headaches on and off, purple toe syndrome, so hoping my toes don't turn black with gangreen. Life is a crap shoot, I guess. LOL! But thanks for your post! Have a great day!

  • That makes sense Thomas45, better to be safe than sorry.

    Thank you

  • I was always very blasé about stroke risks and from 2012 until April when having an Amplatzer Amulet fitted. I only took Warfarin for two periods before and after cardioversions and for a year while trying unsuccessfully to get on the Amplatzer trial and finally having to have it done privately.

  • I'm with you. Doctors scared me that I would have a stoke surely if I didn't get on Warfarin blood thinner. Yet for 7 years I only took one baby aspirin a day and was fine, for AFib. I never had a stroke, or heart attack, or blood clot. Now I have shortness of breath constantly, purple toe syndrome, on and off headaches. I go crazy researching and looking everything up, yet am scared to come of the warfarin. Any and all blood thinners have side effects, the aspirin never gave me any side effects. So I hear ya!

  • First time I stopped warfarin due to joint pain my GP said that I was the third person that week to do so. I asked why the others (both ladies )had and he said bruising, thinning hair and brittle nails.

    One of my neighbours has stuck with it with pain in her weight bearing joints and thinning hair to the extent that she now wears a hairpiece.

  • Thank you seasider. When I first started taking warfarin, I, too, had horrible aches and pains in my joints. Bad enough I already had osteo-degenerative arthritis. My joints were on fired every afternoon! I was told those symptoms may go away after being on warfarin a little longer (I had been on it for 6 weeks), a few days later they were gone! Still get headaches on and off, purple toe syndrome and shortness of breath. Praying in time they go away too.

  • Mine did not go they worsened. Are you sure that he is not also a hypnotherapist?

    There is a BP medication (Losartan I think) that can cause blue toes. Be interesting to be on both!

  • LOL! Yes, very interesting!

  • Friend when on Amiodarone looked as if he had a blue/grey birthmark on his face and neck.

  • It was suggested by an out of hours doctor that if I switched to this alternative I might not have the same side effects.

    patient.info/medicine/aceno...

    Some had not heard of it although it is widely prescribed in some European countries the rest did not want to prescribe it saying that they know more about Warfarin.

  • Gee, I have never heard of that one either. Thanks! I am looking into it and may mention it to my GP. Have a good day!

  • But that one also has side-effects. According to its leaflet a common side effect is: "Unusual bleeding or bruising, blood in your urine or stools". All anticoagulants have known side-effects with some people. I had awful side-effects with Riaroaban, while most people are unaffected. I take Warfarin and my finger and toe nails are brittle. I can live with that. I have thinning hair, but it was thinning long before I had AF, more to do with my genetics than warfain, I suspect.

  • They all have side effects but the suggestion was that one might suit me better.

  • I am 70.

    Been on anticoagulants for the past 10 years. No problem.

    If your EP tells you that you should be on them take his advice and don't worry.

    The article is only for educational purposes as far as our forum is concerned.

    Pete

  • Thank you Pete.....luckily I have a good EP so will trust his judgement but as a precaution as well I will ask the GP for a blood test. You are right it's for Information for the group but there is so much conflicting advice at times when your new to this things to seem to make you question which is the best avenue to take. I think when I am an old hat at this I will worry less and just get on with things.

    Have a good day.

  • I'm a simple soul really, AF free for over 2 years, on warfarin and a shedload of other lollies and don't even think about AF that much. BUT, surely, the ultimate test as to whether anticoagulants are needed or not, is a mix of age, overall cardiac condition and ESPECIALLY the degree to which the left atria is damaged as a result of the onset of AF and not a point scoring system.

    I had no HASBLED or CHADS scoring that I can recall.

    My Cardiologist at the time confirmed that my left atria was damaged and this WILL be the source of a stroke in the future. Therefore I am on warfarin for life. End of !

    So far so good, but who knows whats around the corner :-)

    My point is ..... how can a primitive points based scoring system replace actual hardcore evidence of a physically damaged left atria in assessing stroke risks.

    Anyone out there know - for sure ? Of course - cost wise its cheaper to run a point scoring system than to run an echo ....

    John

  • Was your left atria damaged during a procedure?

  • No, indeed almost the opposite!

    I was diagnosed with AF in some 9 hours from onset by my local A & E team. Treatment started immediately. I was kept in hospital for a further 5 days for all manner of tests including an Echo..... It was this process that picked up the damaged left Atria and resulted in me being put on Warfarin, amongst other lollies.

    Job done. As quickly and as efficiently as that.

  • CHADS and HASBLED is a risk predictor assessment of both stroke and the potential for internal bleeding (brain and intestinal, primarily) based on the health history, age, sex and current medical conditions of the patient. it doesnt replace an EKG or any other diagnostic test. the risk prediction is based on years of research. the patiet's health condition is determined by the specific diagnostic tests. CHADS/HASBLED just helps the doc and patient decide risk of taking anticoagulants, or not taking, on an individual basis.

  • Well, I saw a GP at my health practice last week to specifically ask about anticoagulants as well as why I had not had any follow up on my AF. He very quickly scored my CHADS2VASC and HASBLED on his PC and then told me I have a 1.2% chance of stroke and 4.1% chance of a bleed, so I should not be on anticoagulants. The numbers rather shocked me. I'm a white male who will be 68 in October this year. The perils of old age eh?

    The reason my AF has not been followed up was a combination of mis-information and the way I had been referred to cardiology. I asked about referral to an EP, but was told that's for the cardio people to arrange, and I have to go through their system first. So I now have a referral again to cardiology and hopefully this time the right 'kind' of referral.

  • This is what I keep saying it is a post code lottery!

    When my GP referred me 10 years ago I was referred directly to an EP.

    Hopefully it won't take too long for you.

    Pete

  • I am the same age as you, and my GP gave me the 1.2% stroke risk figure. No-one has shown any interest in the reason for my paroxysmal AF, which I have reported as being diet-related. AF has no detectable effect on my life. The GP did not mention the bleeding risk when advising anticoagulation. I asked about referral to an EP, and got the same reply as you. If I get a satisfactory response from the NHS in the future, I will reassess whether I should start taking anticoagulant medication. I live in Llandudno.

  • Are you on an anticoagulant?

    Pete

  • No, I am not taking anything.

    My comment appeared directly under your entry, but I was actually replying to momist's entry. Just in case of any confusion, "you" meant "momist"!

  • 4.1% in the next year or in your life time?

    4.1% is just a 25/1 chance if you are a betting man. The odds are in your favour.

  • I would prefer a decision to be fact based not assessment based - as indeed did happen in my case. Not much good is it if you are in the 1.2% or 4.1% group! Like the estate agent saying, don't worry, the house you wanna buy is in the once in a 50 year flood category. No good at all if you move in during the 50 year period and it is flooded.

  • There is a slightly more comprehensible and less sensationalist summary of the research here: birmingham.ac.uk/university...

  • It seems obvious to me that whoever wrote that Daily Mail article didn't understand what they were writing about. The article in the British Journal of General Practice was entitled "The role of contraindications in prescribing anticoagulants to patients with atrial fibrillation: a cross-sectional analysis of primary care data in the UK". So was basically saying, I suspect, that some GPs may prescribe anti-coagulants without checking whether patients are taking other drugs which are known to react with the anticoagulants. I have'nt read the BJGP article which is not freely available.

  • My aim of posting the link to the newspaper article was to stimulate discussion which is what our forum is often about.

    I think the aim is being fulfilled.

    In my view, nothing you read these days should be taken at face value.

    Newspapers are publishing more and more to entice readers and they will regularly print contradictory articles within a short space of time.

    Pete

  • It is Daily Mail silly season. They need something sensational to work up the anxiety levels.

    Easy solution - don't buy the Daily Mail.

    My view is that taking any drug is always and risk:benefit ratio analysis, I had learn this very slowly in my journey with AF.

    It is an individual choice but should also be an informed choice and we need unbiased information from health professionals in order to be able to Make that choice.

    What concerns me most is the lack of general knowledge in the population and the lack of in depth discussion between GP and patient and a lack of information given my health care professionals - for a multiple of reasons not least a lack of resources - personnel, time and money, a huge drop in morale and most concerningly, a lack of attention to taking a full history, knowing the patient and their history or even looking up their notes - probably all due to lack of resources.

    Which is why we will end up with Emergency Care System rather than a Health Care System.

    A bleak view I know but unfortunately that is my observation of 10 years experience of dealing with AF.

  • Personally, I refuse to buy any newspaper as they have pretty much all degenerated into sensationalist garbage. Especially the Daily Wail and the Daily Distress . . .

    My main news source is now Google, and even that I take with a proverbial pinch of salt.

  • You can use Google Alerts to get subjects of interest flagged up to you.

  • Fortunately I go to a practice where I have a named doctor and one where we can make same day appointments or future appointments.

  • Hi Pete I too have a problem with whether to take anticoagulants or not. My cardiologist has placed that decision with me. I had a pitruitary tumor bleed in February followed in March, by a diagnosis of AF and Mitral regurgitation. I was given Apixaban for the AF plus bisoprolol. Do I remain on Apixaban and risk a bleed? Or do I take the precaution against clotting? I have also been told about left atrial appendage occlusion which appears to be limited in centres in the UK - cardiologist to come back on that one - what a predicament knowing which one to go for - If I could get the Occlusion done to block the clots I wouldn't need the Apixaban - I wonder if anyone out there has had this done?

    Cheruboo

  • There have been in the past, but as you say, quite difficult to get now as I think I read recently that it is no longer recommended by NICE.

    It is indeed a dilemma, one I have posted about on more than one occasion in the last few years.

    I chose to with A/C. My reasoning was that in the unlikely event of a bleed I would have more chance of recovering from that than I would an AF induced stroke - purely my individual circumstances. Both my GP and EP believe that I made the correct choice for me.

  • Yes I stuck with the A/C, in the hope that the Occlusion might be a possibility. I will find out what the situation is in a couple of weeks when I see the Cardiologist. Will let you know the outcome. I will say that the brain bleed experience was not something to be recommended and I dread seconds - Hey Ho.

    Cheruboo

  • Depends on how bad a stroke you have.

  • LAA is not limited, it is in abeyance due to NHS financial restrains. Mine cost about £9,300 in Brighton in April.

    heartrhythmalliance.org/fil...

  • Hi All , I have P A F , admitted to A E a year ago, 70, female, very fit and healthy, no co morbitities. Echo A1, 48 hour tape showed 2 episodes the longest for 20 seconds. I have never seen a cardiolagist or an ep all of this was done by letter, was told to see my GP and that was it , only had 3 episodes since wihich were 3 to 4 months apart, self converted and felt fine while in it. My GP as some of you will know bullied me into taking anticoags, chads score 2 because of age and gender, both things I can do nothing about. SO, I went to see hin 2 days ago and he actually listened to me, I told him that I feel like I was shoved out of the door after A E, Totally alone with it all ,no one to talk to about my fears and anxieties, I said that I am taking a powerful drug everyday for something that MIGHT happen again so I asked to see an E P , no chance on the N H S he said, I told him I felt like a piece of meat being shoved around a plate. SO I'm paying to see one privately and to hell with the N H S. I don't need life changes as I walk 30 mile a week and am rather boring as far as food goes, look into everything, if it hadn't been for this forum I would have been totally in the dark so thank you all so much for that, my GP told me to stop taking the coagulant till I see the EP Next week, Seeing this article backs up a lot of my thoughts and fears BUT whatever the EP Says or recommends I will listen to and do, not my bully of a doctor who gets paid by the government for every patient he recommends anticoagulation to or not, as long as it's on your file that it was recommended they are in the clear if anything happens to you." What A RANT" Sorry about that ! I will keep you in the loop. Moreen

  • Hope you got it all off your chest.

  • What fun😜

    Nothing like a Sunday afternoon rant!

    Pete

  • Wooden spoon award goes to ...........PP.

  • It's ok dreamer it's allowed 😁

  • I accept the award.

    However, it was all done for a good cause.

    Certainly a thought provoking subject.

    Pete

  • Your right Pete , my other half keeps out of the way. 😁

  • I did thanks , I only have you lot to rant to 😁

  • Anytime. LOL

  • you can see an EP n the NHS should insist or ask a different GP

  • Iv given up Rosy, time to make things happen myself. They should have done it when I was diagnosed .

  • I think they refer you depending on severity of symptoms. Some AF patients are asymptomatic and are happy to be treated by GP- others are referred if different rhythms treatments are needed

  • This one might interest you. When I read an earlier version of it two years ago they still had aspirin as an option.

    londonafcentre.com/treatmen...

  • Thanks for that seasider. Read the article, I will be interested to hear what the E P has to say, I honestly think it's a mind field of differant opinions in the medical profession, I have a friend who is in permanent AF, has health issues and very unfit yet she was prescribed aspirin, granted she's 64 which is younger than me ( she won't mind my saying that as she totally agrees with me ) she doesn't score 2 on chads because she's younger but I do because I'm older but I don't have her health issues and am by far the fitter of the two, maybe commen since should sometimes come into it and not government guidlines. ( I'm ranting again ) 😀

  • Ranting is good especially if you do it doctors who don't agree with you:-)

    Good luck with the appointment.

  • Cheers Seaside,

  • I was given aspirin in A&E in May this year! !?

  • As I understand it Asprin is no longer recommended for AF.

    Below is the N.I.C.E recommendation from 2015.

    nice.org.uk/news/article/of....

    One thing that may be behind ghem only prescribing aspirin is that having read your previous posts I note that you only had one episode of AF and the doctor suggested it might be a one off .

    All the same Iwould suggest it might be a good idea for you to talk to your doctor.

    Pete

  • I felt the same way as you! I made a trip to the emergency room one night because of shortness of breath. Heart doc said I had permanent AFib, another doctor said it was because I had asthma! They bullied me to take Digoxin for heart, and warfarin for blood thinner. (I had been taking one baby aspirin a day as recommended by my GP for the AFib.) Heart doc also said I MIGHT have congestive heart failure. How can you maybe have CHF??? I'm from the US, and I do believe it is all about the money. Things aren't what they used to be. (I'm 68). The digoxin devastated me, and I finally told GP I would rather die then take it one more day as it turned me into a zombie. Couldn't eat, couldn't move. He said okay, get back on 100 mg of Atenolol as that was what I was taking before the visit to hospital. Now I am looking for a new heart doctor, but who do I trust? Plus, could you tell me what NHS stands for? Good luck with your EP. Yes, please let us know how you made out. Hugs from the states!

  • NHS stands for "National Health Service"

    Pete

  • Thanks Pete!

  • I think that's half the v problem Redhead who do you trust, hopefully I can trust the EP , let's face it we have trust someone but up to now that hasn't happened. Good finding another heart doctor. Moreen

  • Morning Stivvy

    I only had time to speed read all the numerous responses to my initial post yesterday which was designed to stimulate a discussion about the pros and cons of taking anticoagulants for AF.

    As it turned out it did just that.

    For so many of us AF is and has been a very debilitating condition not helped for some by the blasé response, I have read, that so often comes from sufferer's first call doctors - in the UK their GP.

    The totally unacceptable response you have had is a very sad story and I wonder if it came about due to the post code lottery driven by local budgets or from a total lack of specific knowledge in an effort to make you just go away and put up and shut up.

    Going back to my reasoning for my initial post one wonders if your GP also does not understand the pros and cons of the various anticoagulants.

    Whilst not at all a totally acceptable situation for you I hope your private consultation with the EP enables you to get some help. I have been fortunate enough to be referred to EP Consultants over the many years I have suffered AF and as you will also be not surprised their approach in knowledge and communication skills has varied.

    If you get a good EP it can make all the difference.

    Best wishes

    Pete

  • Thanks Pete you are right in everything you say , as you all have experienced it is guite a blow to the confidence when your diagnosed with this codition however mild ot serious it is, I suppose because mine is P A F the referral to my Gp might be acceptable to them but not to me, I have so many guest ions and answers and I would prefer them to come from the horses mouth as the jockey doesn't seem to know much at all. . I have a natural resting heart rate of 52and low blood pressure yet he gave me bisoprolol, I was on my knees withit and it was only 1.25 mg. So hence the lack of confidence but whatever the E P says I will do as I have to trust somebody and my GP certainly isn't the one. Moreen.

  • I have had PAF for 26 years so this would NOT be the reason for you to be only dealt with by your GP.

    For the past 12 years I have been under the care of 4 separate EPs although for maybe the previous 10 years I was just relying on "just taking the tablets".

    I moved house and live near a centre of excellence now and my care level changed dramatically. Even now I feel my GP surgery think I am "a pain in the do dahs!!!!".

    Until recently I had PAF flipping in and out on a regular and more frequent pattern, but I have now flipped into Atrial Tachycardia (a very fast even (ish) rhythm heart beat.

    When I had PAF I too had a resting heart rate of 50 - 55 and was also on Bisoprolol 1.25mg. I was not on my knees as you were but I was told it was no longer appropriate as I had developed heart block which is poor conductivity between the upper and lower chambers.

    When you see the EP, and particularly as you are paying (Grrrrr) I suggest you trawl through our various post subjects and get a nice long list of questions ready and write them down. Then sort them into a list starting with the most important as you see it.

    Pete

  • I will Pete, I posted a while ago which you responded to I said that my Gp frightened the life out of me by saying you have P A F now but you will end up with permanent AF , That's why he pushed me to take anti coats, hearing your comment as to how long you have had P A F gives me so much hope. I honestly think in my case it's fear because of my Gp, so hence the private appointment, we travel a lot and are out of the UK for 6 months of the year and I need my confidence back to be able to do that. I thank you Pete for you comments, it's been a big help to me.

  • Sorry I did not realise, sometimes I find it hard to keep track.

    I think it is so bad when doctors treat you like this, it is unacceptable.

    I, however, MUST also speak up for the medical profession because in my experience I have encountered so much more good than bad, as is true of everything in life.

    I have total confidence in my EP and I am also being referred to a Consultant dermatologist as I have terrible allergies associated with hospitals and my problems and I have had the consultants ring me at home to discuss my condition on more than one occasion.

    In addition when I severed my artery in my hand 18 months ago I had the best care that could ever been hoped for.

    Pete

  • Yours is just the kind of confidence that I want Pete and once I have it I know I will be able to move on, just a shame that my GP carnt give me that, I should get an appointment this week so will be in touch to let you all know the outcome, Many thanks Moreen.

  • I am a bleed risk due to an haemangioma on the tongue. Because of that and I'm cardio fit - metabolic age 15 years younger than my actual age - an EP recommended that I should not take an anticoagulant for exercise induced AF. Eighteen months later I had a full stroke and thrombosis was delayed until a second CT scan was taken to confirm that I didn't have haemangioma on my brain. The stroke left me blind on the right hand side, and in consequence my driving licence was revked. I now take Dabigatran (Pradaxa) that has a reversing agent and, I clear scrub with razor sharp tools as part of a voluntary group in a nature reserve. If I had been prescribed an anticoagulant I may not have had a stroke and, my bleed risk would have been the same or less than it is now. Bewary of those bearing one size fits all wisdom; they don't have to live with the consequences.

  • Your reply certainly brings the controversy over this issue into focus.

    We are all so different and we should all be as aware as possible of the potential consequences of medical solutions and procedures associated with AF.

    I am on Warfarin but slipped in the garden and fell with a thick glass bottle in my hand which severed an artery in my left hand. (I was stone cold sober).

    This presented my local A&E with a challenge and it took a lot of blood and 3 hours with intermittent tourniquets to stablise me sufficiently to enable them to transfer me by ambulance to another hospital for restorative micro surgery.

    It is not easy having AF!

    Pete

  • You have had a bad time of it John and that's exactly why I want advice from the man himself, I haven't even seen him yet but feel very confident about it and will comply with everything he says. I think here in the uk they could do more to support patients, I have an asthma nurse who is wonderful why not an AF nurse as well , I'm sure my practis has 100 of patients with it, down to funding I guess. Keep well. Moreen

  • Thank you for your kind good wishes. The EP that recommended that I should not take an anticoagulant was the same EP over a year earlier who prescribed Dronedarone for my AF. Unfortunately I had a rare reaction that I was later told placed me "close to death". However, a Consultant published a paper on my case for the Royal College of Physicians in Edinburgh, so something good came from it.

  • Sad story and best wishes for more recovery for you.

    Could not agree more about the need for tailored advice.

    As a GP (with PAF) I spend a lot of time counselling people about whether they should be anticoagulated or not and, if they should, whether to go for warfarin or a DOAC (now Direct as not new or novel anymore!).

    One of the things I think I do better than my hospital colleagues is to take into account the patient's informed wishes.

    Some people, after FULL discussion, choose not to take any anticoagulant since the risk of stroke remains less than the risk of not having a stroke. In such cases, however, the possibility of a debilitating stroke has to be made crystal clear.

    To end with the first point, there is no one size fits all advice and folk need time to assimilate and process complex information.

    Once again, best wishes to you.

  • Thanks for your reply.

    I think the popularity of this post would suggest we need more GPs like you.

    How about doing a lecture tour?

    Pete

  • Ha! It's a bit easier having a vested interest and I guess that makes it easier to give folk the time I feel they need.

  • It's good to hear a GP's view and, I agree with the post from "pottypete 1" that we need more GPs like you.

    As to delaying taking an anticoagulant, I was a patient rep. for a revised NICE Patient Decision Aid, and there was no evidence as to whether the uncoagulated risk year on year was the same, incremental or exponential. I also note the Royal College of Physicians Stroke Guidelines in 2016 at pages 99 and 100:

    "5.7 In about a quarter of people with stroke, and more commonly in younger age groups, no cause is evident on initial investigation. Other causes that should be considered include paroxysmal atrial fibrillation (PAF)..."

    "5.7.1 ... There is no consensus concerning the shortest

    duration of PAF that constitutes a risk of cardioembolism, though many studies have used a threshold of 30 seconds. Compared with permanent AF, PAF tends to be found in younger individuals with fewer cardiovascular risks and may be associated with a lower risk of stroke and systemic embolism..."

    My PAF was only triggered by quite intensive cardio exercise and I would return to sinus rhythm within minutes of stopping exercise. I had a stroke at 69, I presented without any FAST indicators (although instant blindness can now be included) and it took an hour of talking to the ambulance paramedics for them to conclude that I had suffered a full stroke.

    My GP now calls me in to be a mystery patient for first and second year medical students. So far they have had little understanding of AF, arrhythmia, stroke and, only one second year student understood hemianopia. May be that it's too early in their medical education.

    It seems to me that there is much to be done to advance evidence based diagnosis and treatment of AF, also the potential for AF to cause strokes and how they are diagnosed.

  • What a minefield.....but I shall use some of the discussions on here to help me compile my list of questions for my next EP apt.

  • My wife just got her blood test results after a week of eliquis. Great news, her hemoglobin has remained high so there is no indication of bleeding. This is after a year of trying everything from aspirin to xarelto and encountering bleeding with all of them. She had two camera endoscopic procedures and two endoscopic cautherizations that found and repaired four suspicious areas of bleeding. It appears that all the leak areas are now repaired. So now we move on to a planned ablation in September for her afib. She could not have that done previously due to her inability to be on blood thinners after the ablation. It also permits the watchman filter if she chooses that, to eventually eliminate the need for blood thinners. Ironically, insertion of a watchman to eliminate blood thinners requires the patient to be on blood thinners for 2 or 3 months after because the stroke risk is high until the heart heals.

  • this is a newspaper article, not the original research. alarmist, not informative. they should have posted a link to the published results. here's the link to the Journal report: bjgp.org/content/early/2017... and here's a study showing *under utilization* of anticoagulants :http://www.medscape.com/viewarticle/881685.

  • Yes I realised this but the reason for putting the link on my post was to stimulate discussion about the subject.

    To be clear, I and many others are totally aware that such newspaper articles are often published for sensationalism and to entice readers by headlines.

    Having said that I think that the mere fact that there have been close on 100 exchanges of opinion on the subject has winkled out a lot of misunderstanding.

    For some the thought provoking result of the discussion has made a number of people think about how easy it is to take things at face value, be they reading an article or accepting what a doctor may suggest or advise. It is fine for educated articulate individuals who can stand up for themselves, but I am pretty confident that such folk are in the minority.

    I do not regret posting the link, it is not always easy to find the original source, thank you very much for posting this, I for one will read it, when I get five minutes.

    Right now I am in the middle of a week of Grandchildren minding and am exhausted, particularly as I am suffering from Atrial Tachycardia - resting 120bpm.

    Best wishes

    Pete

  • Well done Pete, well that post of yours certainly stirred up the gravy ! So to speak !

    Of course there is one solution ............. have The Watchman fitted. The extent to which this is available on NHS, or privately, cost and effectiveness is unknown to me. No need for any A/c's then.

    John

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