Revised and edited post. My apologies if this post caused any confusion or led down the wrong track. Top Biscuit has been in touch with me and wishes to make the following very clear:
Her post wasn't about anticoagulation at all, although she understands how it could lead the mind to the question of anticoagulation. Her intention is to address the matter of the statisical information we are being given and the evidence for it but absolutely DOES NOT want to give anyone the idea that they might not need to take anticoagulation. If anyone draws their own conclusions from the evidence discussed that's entirely up to them but she doesn’t want to take part in that conversation.
My apologies to TopBiscuit for any confusion my post may have caused and we’ll done for putting together such a well investigated and diplomatic piece of writing. It’s absolutely right we should be able to question the source of evidence on which a particular medication or procedure is based. I do hope you get some clarification regarding anticoagulants.
As my diagnosis is persistent AF (or should that be “was”since an ablation returned me to NSR) I guess I’m one of the 5x more likely to have a stroke. Due to my age I am advised to continue the anticoagulant for life. I have to say I’m happy to do this as persistent could return “invisibly” at any time putting me at immediate risk. As any form of AF tends to be a progressive condition I wonder if this is not in part why anticoagulants are prescribed for paroxysmal AF which I guess can progress to persistent overnight, as mine did.
Maybe in this age of kardia and watches that give instant if simple ECG results, a new system of administering anticoagulants could develop based on home readings, much as diabetes is self managed. But as research in this country has taken such massive cuts in recent years that could be a way ahead.
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Rainfern
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I’ve taken my own posts down when I’ve had a moment of self doubt (they happen) over something I’ve put a lot of investment in. I guess we mustn’t assume it’s a censorship issue.
I have also taken my own post down, after I have been told that it might disturb others. As for the censorship, it is present everywhere! Before drawing conclusion, let's await what the original poster has to say...
I had just read Helen/TopBiscuit’s incredibly interesting, measured and well-thought-out post, and was looking forward to reading the replies, when it disappeared! Deleted, it says! I’m shocked. It seemed that Helen has clearly done a lot of research on this subject and was kindly sharing the information she had gleaned, and asking for further clarification from the experts, for the benefit of us all on this AF forum. Please can someone explain why others are not now allowed to read this? It’s deeply troubling.
I agree with you entirely. She was making a genuine enquiry and sharing her questions and research with us. There were a couple of excellent responses including from BobD and nothing at all to be upset about.
As has been said many times, science advances only because of dissenting voices. I am not in the circle that says 'we can't allow dissenting voices as we need to protect the majority'. Joe Public can make their own mind up, as we do every day!!
Was the original post labelled ( with a shaded background colour ) " this post has been deleted or maybe withdrawn" ............ can you remember. If so this has happened to me in the past. Maybe the original poster changed their mind and cancelled it. Neverthe less ................
I was put on Warfarin for life at age 65 the day they diagnosed paroxysmal AF ( and self tested at home with my own Coaguchek device ). I am still on an anticoagulant ( Edoxaban ) even though I no longer ( that I know of ) experience AF events. The real issue for me is that my original Consultants write up explained that there would be times when I could be asymptomatic. So for me the risk is quite high as I may not feel an AF event due to my having a paroxysmal moment or I maybe having a moment but just not aware of feeling any symptoms. How would you know ? So anticoagulant for life it is.
Certainly though, my paroxysmal AF has never progressed to anything more permanent.
It’s always good to hear when AF hasn’t progressed, that’s such good news. Clearly “Afib begets Afib” does not apply to us all! What’s a coagucheck device?
As no one else has answered your question, if you take warfarin as your anticoagulant, you need to ensure your blood's level of anticoagulation is within a certain range. The level of coagulation is called the INR, which stands for International Normalized Ratio.Many people using warfarin go to clinics to have the INR tested. Others test themselves at home. The test equipment is called a Coaguchek meter
I tried one if the new anticoagulants which caused me problems, so went back to Warfarin and bought my own Coaguchek meter to check my INR
With Warfarin it's best if you have a regular diet. Contrary to some online medical sites Warfarin dies not restrict your diet. Once you've tested your INR your dose of Warfarin can be changed to keep your INR within the stated range. So it's best that you have a regular diet. I eat lots of green vegetables regularly so my INR dies not fluctuate. Someone who doesn't eat green vegetables regularly will stay in INR range , probably at a lower dose. Regularity of diet is important. I take 7.5mg daily.
The new anticoagulants, the DOACs work on a different part of the blood and don't need testing in the same way.
I check my INR every eight weeks, but if I think my INR might be higher or lower than it should be, I can test at any time, fir peace of mind.
If you are taking the anticoagulant Warfarin, you need to determine the INR of your blood. This can only be done by using a device ( similar in some ways to a diabetic device). which pricks your finger, you drop blood onto a test strip and bingo you get a test result, an INR. When you are put on Warfarin you will be tested and given an INR range dependant on whatever cardiac condition you have. Mine was a range between 2.0 and 3.0 with the perfect target INR of 2.5. BUT ONLY IF YOU ARE TAKING WARFARIN. DOESN'T APPLY TO NOAC'S.
No AF doesn't always beget AF .... I don't subscribe to that at all - in many its true equally in many it isn't. What I think is often overlooked is the speed by which a diagnosis is made AND how quickly treatment is started. For me it was around 9 hours from onset to when I was admitted to A & E and work started on my heart pounding away at 156 bpm. Then came the Amiodrone drip then came the reversal of the pounding heart very slowly it started to drop. So within 12 hours my heart had had its 5 minutes of fame !! 😂
Now that is quick .... compared to many posts I've seen on here over the years it is awesome .... and the reason why my AF got kicked into touch and I was able to get things controlled so quickly. There are many on here who are weeks, months before they get sorted. By that time the AF has already polluted the electrical systems of the heart.
Morning Ben - out of interest what do you think is the outcome if it controls itself- is it likely to progress.? When I was first diagnosed I was sent immediately the Heart Hospital ( the episode was caused by an anti-biotic that made me vomit until I was vomiting flecks of blood and my GP was worried about a dissection) anyhow, by the time the Cardiologist examined me, I had reverted to NSR (the only treatment I had was an anti-emetic injection). It was about 4 hours between diagnosis (the first ECG) and examination by the Cardiologist - I stayed in hospital for the weekend with just a couple of short reports of A fib on my bedside monitor.
Rainfern - thank you so much for your kind words about my post. It was taken down by Admin while they are working on getting the answer to my question, which I await with great interest.
It's interesting though that you and several others have described my post as being about anticoagulants. BobD responded with some very interesting information about GPs unwillingness to prescribe anticoagulants due to their concerns about GI bleeds but discounting the many strokes that occurred as a result of the under prescribing of anticoagulants. (Sorry if I've misquoted you, Bob - I only saw your reply briefly before the post was gone!).
However, my post wasn't actually about anticoagulants - it was about the accuracy of information that we're being given. Though of course that can lead to questions about anticoagulation, that wasn't my point. I believe that most people are perfectly swayed by the information that they are more likely to have a stroke if suffering from PAF or AF regardless of whether it's 5 times the risk or 3 times the risk or any other sum, really. Unlesss the sum is genuinely negligable of course.
My point is that we should be given accurate information in order to make our decisions. So I really look forward to receiving some answers to my question, and will have more, to say about it no doubt, when I do!
I didn’t see the post that got took down but I too agree that we don’t always get given the information that we really need about the medication we are being given when I was first diagnosed with paroxysmal Afib I was just told to take the two tablets straight away as they would stop me having a stroke but was not told which one. I was put on a beta blocker and Apixaban so was not told what Apixaban does and when they said my condition was being managed I came off of it but I then needed two ablations so had to go back on it but have recently come back off of it but have been told I will need to go back on it when I get to 64 as I have just turned 60 but again I don’t really know the reason why I have to go back on it.
It's to do with your risk factor. The CHADVasc2 I think it's called. You score more points as a woman (!) And your score goes up with age. That part of it us about statistics and I think needs to be viewed with a little scepticism. Simply because more of the population die anyway as we get older. But you might find my response to Rainfern useful.
I worked for the Nhs for nearly 40 years. Only stopping because of my heart attack in 2021. As a nurse/midwife I chaperoned many doctors talking to patients. Not always but frequently the information given to patients is aimed at getting them to go down the treatment route being advised by the doctor. Therefore the information isn’t unbiased. I did have a bit of a reputation for being vocal and would strive to inform the patient of both the pros and cons of any treatment ( or not having treatment) which did lead to me having a few interesting debates 😂 with the doctor. It’s often the way the information is put over by the individual doctor and can be persuasive with the fact’s which is not informed choice.
I didn't read the OP so glad you've reposted this. I asked the cardiologist about continued use of anticoagulants since I'd not had any AF at that time for 19 months and they were discharging me. I mentioned the discussions we have here and the concern that the landmark reference study used a cohort of people with persistent AF to compare with general.hewlthy population. He told me that more recent studies have been able to do retrospectives on patients post ablation comparing those who had come off anticoagulants with those who had not. Instances of stroke were higher in the group who had come off the anticoagulants. I wish I'd asked him for the study. But maybe someone can find it?For myself, having early on on my AF journey had a conversation with an old university friend, I decided to stay on the anticoagulants regardless. He was AF free post successful ablation for 10 years. AF visited one night and so did a stroke. He lost 2/3 sight in one eye. He's OK now. He'd also had a heart attack and said he'd take that over a stroke any day.
I'm sorry to hear about your friend. There's no doubt that aging and AFib is a potent combination. Also just to say that my OP was not about anticoagulation, it was about the evidence for the '5 x risk of stroke for people 65 yrs + with 'lone' PAF' as stated in the AFib Alliance information leaflet. I would be very interested to see the study you mention. I don't doubt that there's increased risk but by how much and did that post ablation population have other risk factors such high blood pressure, obesity etc? When an aging population is being studied there's so many variables.
Apologies for previous Reply which I deleted in a rush because it referred to the wrong article.
Whilst I realise you were not Posting about anticoagulation, I wanted to draw your attention to this article which presents more refined results than the "5 times" mantra.
Apologies however if your research has already found it ...
“Pill‐in‐Pocket” anticoagulation for stroke prevention in atrial
PS. I have been told by Admin to add the following warning ...
"if anyone has any questions regarding the article and how it may apply to them to please speak with their doctor or healthcare professional for advice".
Thanks, Bob! I'm glad you revised it - I nearly fried my brain trying to follow the video from the first link. 🤣
That study sounds very interesting. I look forward to seeing the results, though it'll be some time before they're published. It's good to know that clinicians are out there looking at the "one size fits all" (to quote the study) approach to AFib treatment.
Thanks for posting, I too missed the post and am interested in the replies. Lack of information or even misinformation given out about drugs is rather alarming. One GP told me to cut a tablet in half when I was to reduce my meds, thankfully I went to Pharmacist who told me - go back to GP and insist to get the lower dose tablet, halving this tablet is dangerous. Reason - the lower dose tablet is more expensive.
As I understand it, here in the UK, treatment for AF and most other conditions are determined by NICE therefore NHS GP’s will follow that procedure until the patient is seen by a specialist who may modify the treatment to take account of the specific circumstances of the patient. Because of the very long wait times, we often suggest the patient pursues a private consultation if it’s at all possible.
GP’s can only prescribe certain drugs and for AF, it tends to be Bisoprolol to help control the heart rate and an anticoagulant to reduce the increased risk of stroke. Personally, I’m not bothered by how much this risk is increased, it’s enough just to know it’s increased and if Cardiologists and EP’s with AF take them, that’s good enough for me. According to my surgery records, which I can see online, I was also assessed using the HASBLED process to determine my bleed risk. As far as I know, unless a GP is aware that their patient has a specific bleed risk, protection against stroke takes priority and an anticoagulant is prescribed.
I think we sometimes forget that all this goes on at the time the patient has just been diagnosed. I may be wrong, but I’m not sure that is a time when the patient is capable of contributing much to the treatment process, but if they belong to forums like this own, they can accumulate the knowledge necessary to at least have a meaningful discussion with their consultant when they eventually get to see one.
This was explained in an excellent video by Professor Richard Schilling from Barts Hospital, London which I posted before Christmas which I was subsequently asked to delete, but that’s another story…….
Apologies for my first Reply which I deleted because of an error by me.
I was just wanting to draw your attention (if you missed it) to the article I mention in my Reply to Hidden above. (It now gives the correct article link I intended)
Please note, TopBiscuit has contacted me to make the following point very clear: Her post wasn't about anticoagulation at all, although she understands how it could lead the mind to the question of anticoagulation. Her intention is to address the matter of the statisical information we are being given and the evidence for it but absolutely DOES NOT want to give anyone the idea that they might not need to take anticoagulation. If anyone draws their own conclusions from the evidence discussed that's entirely up to them but she doesn’t want to take part in that conversation.
My apologies for any confusion my post may have caused.
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