Hi newly diagnosed with paroxysmal AF and new to this forum. Glad to meet you all. It’s all been a bit of a shock and a whirlwind. I am now on beta blockers and Edoxaban. My question is, with a CHAD score of only 1 (by dint of being female) is it usual to be anticoagulated? Do the risks of bleeds not outweigh the risk of clots? The beta blockers seem fine but the Edoxaban is causing some gastro discomfort. Discussing with GP tomorrow but interested in hearing from anyone else who’s in the same position.
Anticoagulation question: Hi newly... - Atrial Fibrillati...
Anticoagulation question
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Silky57
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Hi Silky, I'm also newly diagnosed with paroxysmal AF and like you have been prescribed Edoxaban, with beta blocker propranolol for if/when I need it. I don't know what my CHAD score is, I kind of blanked the whole thing out in the first week or two - it's quite a shock isn't it? I threw myself into qigong practice thinking I might magic it away, but no such luck! Thanks for raising the question because I've obviously got a whole lot more to learn. I'm having a 7 day heart monitor in beginning of February so will hopefully learn more then. Meanwhile I think we need to trust medical advice regarding anticoagulants because every case is different and those doctors have to make some very fine tuned decisions. Just take extra special care of yourself and good luck on your healing journey.
Thanks for your response. I’m sorry to hear you’ve also been recently diagnosed but it’s good to feel I’m not alone. Mine was picked up on my Apple Watch - just one 30 second AF run and suddenly I feel like my life is upside down. It’s so hard getting through for medical advice too - I feel like us newly-diagnosed need a bit of support just to ask questions as my next cardiology appt isn’t until late April. I hope your appt goes well in Feb - make a list of questions you want to ask so you will be forearmed :). You take care too.
BobDVolunteer
It depends on how much you fear stroke. A score of 1 makes it advisable and I know what I worry about most. AFter 17 yeasr taking warfarin I an still waiting for a serious bleed and I machine metal parts and work with engines.
Thanks for replying and you make a very good point. I ask because I had a look online and most countries don’t recommend anticoagulants for a CHAD score of 1 based on sex only. The flip side of stroke is of course brain bleed. And because I have some side effects it’s brought the question to the fore in my mind. I guess lowering the dose might be a compromise. Let’s see what the GP says. I have so many questions and seem to need to learn so much!
Anticoagulants are not recommended if the score 1 is only for being female.
mdcalc.com/calc/801/cha2ds2...
”2012, the European Society of Cardiology (ESC) guidelines recommended a clinical practice shift, to initially focus on the identification of ‘truly low risk’ patients who do not need any antithrombotic therapy. These low risk patients are those CHA2DS2-VASc score of 0 (male) or 1 (female). Subsequently, the next step is to offer effective stroke prevention (ie. Oral anticoagulation) to those with ≥1 additional stroke risk factors.”
Yes this is what I read. But they gave them to me straight away with no discussion.
I would not worry much about the risk of a bleed but if they are causing unwanted side effects that is a reason to query them. Those here who are pro anticoagulation no matter what your CHADSVASC score tend to be those who don't have any side effects from them . You have to strike a balance between fearing a stroke that might never happen and for which your risk is very low and living with a side effect that is making every day of your life uncomfortable or even downright miserable. NICE have some very useful charts giving the risks of strokes and bleeds for the different CHADSVASC scores which give a much better idea than the "5x the risk" mantra.
Hi I was the same given them by hospital for PAF atcage 57 and female chad score 1. Then when I saw EP he said I didn't need them as Chad score of 1. I since have restarted them a year later before operation as had a cryo ablation in November. I am awaiting a follow after operation with EP I will wait to see what he recommends
The key issue here is it sounds like you AF is asymptomatic. If that is the case you could have more episodes during the day or night without realising. That's good in one way as it doesn't put life on hold during an episode but it does mean anticoagulation is advisable even on CHADS 1.
I believe Patient Rights mean you can insist on a swap to Apixaban rather than Edoxaban. The former is a favourite amongst members here and may stop the stomach issue.
If funds allow, make a private appointment (around £250) with your cardiologist that way you get early advice, a tad more time for your Q's and a reduction in anxiety as otherwise the first year can be quite overwhelming - I believe in early action, wide advice including Alternative Practitioners and taking back control.
Given time, life is likely to get much better!
Thank you! Swapped to Apixaban - see update below. I’m not asymptomatic- I had one short symptomatic episode, captured by my iWatch, which has not recurred. My watch is now set to automatically monitor regularly for afib & thankfully all clear last 4 weeks. I’ve had benign ectopic beats all of my adult life and I realise this could just be the start of the infinitely more sinister afib, but I’m keeping my fingers crossed it might settle as my onset was post Covid. I’ve already paid one private practice EP for diagnosis but may well save up for another! Really appreciated your sound advice.
I had paroxysmal AF and was treated with beta blockers and aspirin. Nobody told me aspirin was less than useless nor noticed I had changed to permanent AF though my doctor now and again commented that I was not in sinus rhythmn, 'but that's nothing to worry about'.
Then suddenly I had a stroke in the middle of the day two years ago when I was doing light gardening. I have been fighting to recover ever since then and it is an experience I would not wish on my worst enemy, and has changed my life.
I just wish someone had recommended apixaban or similar before that happened as it would very likely have prevented the stroke. The modern anticoagulants have a very low risk level of serious bleeding and the risk level of strokes remains far, far higher as you never know what your heart might be doing if you suffer from AF.
Ask your doctor if what I say is true or not. I suspect he will say the same.
I’m really sorry to hear of your stroke and your thoughtful response was really helpful in coming to my decision to try a switch in anticoagulant brand before giving up completely. With best wishes for your journey to recovery.
Hi Silky,
I am 2 months down the line with this new diagnosis of PAF , I have daily episodes of AF , I’m on diltiazem as didn’t suit beta blocker. My CHADs score is also 1 by nature of being female.
At all my appointments I bring up this question as I’m not on an anticoagulant & I’m im very concerned about stroke risk. Nurse & cardiologist all say the same, very low risk and in accordance with NICE guidelines it’s not recommended til I’m 64 unless I get any other medical issues , I’m still worried though.
I wish you the very best, welcome to this forum it’s brilliant. Do let us know how you get on.
Try and get to speak to or see ,an Electrophysiologist. They are far more informed than cardiologists.
ok, thank you , will do. I have a cardiac CT booked for mid Jan so I’ll see if that adds anything to the picture …. although I hope it doesn’t if you know what I mean 😬
Yes! You can request a referral to an EP on nhs or book yourself private initial consultation ( circa 200.00 pounds)Best thing I ever did.
Take care xxx
Thank you , I’m seeing a private cardiologist for the same price as he specialises in arrhythmias. He books the tests on nhs & then I see him soon afterwards for an overview & hopefully more of a plan.
Unfortunately on the nhs ( which I totally understand) I don’t get to see a cardiologist, just the liaison arrhythmia nurse and sadly when I saw her she was not very helpful at all So my list of questions stayed in my pocket as it was clear she couldn’t answer them and really had that “ heard it all before” attitude. My husband & I exchanged a look and promptly left !
Is it my GP who can do the referral or do you think cardiology dept have them there too ? I don’t want to leave a trail of discarded cardiac medics !
So sorry to hijack the discussion , I should’ve started a new chat 🤐
Gp or self refer . I am under a cardiologist for one heart issue,and EP for arrthymia.Ive never heard of not beibg able to communicate with cardiologist at all!
Best of luck xx
Hi Katomummy,
So strange we are in the same position, yet totally different approach taken. NICE guidelines are indeed no anticoagulants for us females under 65. My GP is, however, adamant I need them, despite the side effects I’ve suffered and the potential offset of bleeding issues. I appreciate I’m lucky to have a choice unlike you. Will you see the same cardiologist again in January? My EP explained to me there is no consensus of opinion on the female CHAD1 issue, so if you see a different one they may be more open to prescribing if you’re still worried.
My wife also got a diagnosis of PAF and was put on blood thinners. At the time she queried it with the consultant as she suffers from nose bleeds. His answer was, which would you prefer, a longer nose bleed or life changing stroke impacts.
When in PAF your different parts of your heart get out of coordination and blood can pool in one of the chambers. Clots could form in this pool and then move around the body till they cause a stroke. Not saying that will happen in your case but it does increase your risk so IMHO I'd carry on taking the blood thinners if you can.
Hi there. Thanks for your reply. My main concern is a serious bleed - like a brain bleed - which is a higher risk in anticoagulated patients. Any decision is always a balance for an individual. If I’m understanding what I’m reading online correctly, the CHAD1 score for a woman is technically outweighed by the risk of serious bleeding (HAS-BLED score). Best wishes to your wife - it’s a horrible diagnosis.
hi, I’ve been taking rivaroxoban for 2 years now and despite many cuts and a tooth extraction I’ve had no real problems. Sometimes a cut takes a little longer to clot but that’s all. As you’ll be aware the main risk comes from head injuries or stomach ulcer but I feel that risk is better than a stroke
I don't think there's an answer except to follow medical advice. The incidence of blood clots seems quite high in people with AF and it's not known exactly why, with, for example, the shape and size of something called the atrial appendage involved in it all, so not necessarily just the AF or even the AF at all.
Steve
Apixaban has given me no problems and I do have intermittent IBS ( longstanding,not increased or worsened)The risk ,to me,is of the much higher risk of stroke. Anti coagulants are often called blood thinners,and people link this to increased or spontaneous bleeding.
I was classed as a Chad1, GP discounted AC when I queried why I wasnt on it as he said although I had hypertension it eas controlled.
I went on to have a TIA( ministroke) promotly ACd at hospital,and never so glad.
That was years ago.
The newer CHAD score adds one just for being female. So now you’d have been a 2 with your high blood pressure and would have been diagnosed anticoagulants from the get go. Thank goodness medicine is forever moving on but I’m sorry it wasn’t soon enough to prevent your TIA. Hope you’re doing ok.
I had a stroke 3 years ago, subsequent investigations found I had Afib. I've been on Edoxaban ever since. No issues with it. It doesn't thin the blood it just slows down coagulation. I've had a couple of tooth extractions with no issues. Devon hubby is spot on for the reason to take anti coags. Im just happy that this is one of our arsenals to avoid a stroke happening.
Hi Silky. Hope you're doing OK. I'm not sure what my CHAD score is (will be a little higher than you I think) but a few observations that might give you more info...*I had Afib problems for years. Long story short, I started Fleccanide a year ago and it has been fantastic. I'd be in Afib for days. Now I'm 99.5% Afib free. I only get breakthroughs if 'provoked' ie by a viral infection (Covid, flu, etc) or a real bad mix of stresses. Raising my flecc dose sorts that out very well. I feel great.
*I've an excellent cardiologist EP at Western General in Edinburgh. I'm pre-approved for Apixoban / Elquis if I feel I need it - if I was having more breakthroughs. But I'm not. EP said Elquis is a great drug. But I'm happy not to be in anything else. My risk these days is low and I do all I can in other ways to keep it that way!
*Beta blockers can leave one feeling tired or blah... I take one small dose of Bisoprolol 1.25 as it has a synergistic effect with the Fleccanide. That works well - my rhythm is absolutely controlled, and my rate is nice and calm.
*I also take a statin as they're excellent all round and help reduce endolethial problems.
Stroke is obviously a huge risk - and no CHAD score truly can account for our individuality. I've had arrhythmia issues (SVT had me in hospital repeatedly in my late teens / 20s) and I'm now a fit 63 so I guess I'm surprised I 'escaped'! I'm just very grateful to have found a solution with Fleccanide - and really & truly should have been on that many years ago.
Elquis doesn't fix the root problem.
Take care!
Gary 😊
Hi Gary, thanks for replying. Yours is a super interesting post to me. Am I reading correctly that you are on no day to day medication at all even though you have afib? Just a pill in the pocket approach? I’ve only had one short run of afib (just one episode of 30 seconds), I’m under 60 and have no other risk factors. I am now advised to medicate with a beta blocker and an anticoagulant every day as a preventative measure. I’m not saying I don’t feel blessed to have caught this thing early but I do question whether I’m being over-medicated, hence my original post.
Hi SilkyI'm not a doctor... but I do have an adult lifetime of arrhythmia experience! And on the positive side - I'm still here, haha.
I do take Fleccanide daily (it can be used as a pill in pocket, but I get a better result from a steady prophylactic approach). I'm on a small dose which I can reduce or increase depending on trigger levels (ie I've a bad cold at the moment and take a bit more). It's not for everyone (your heart needs to be structurally sound) but I just wish I'd started it years ago!
On the face of it, and unless there are other reasons, your treatment seems a bit questionable. Beta blockers are often given, certainly, but the anticoagulant... hmm.
I decided only to take an anticoagulant like Elquis if my afib broke thru the Fleccanide 'wall'. Cardiology happy with that. If I've no Afib, my risk is really low.
But Afib is so often undetected (some of us feel it - I know instantly (awake or asleep!) if I go into Afib - but others (like my friend Chris here who had a stroke and only then discovered he'd silent Afib) just don't know. You need to be sure about you.
The great thing is that you'll now be alert to it. Smartwatches can help greatly.
One short run is no reason to panic at all.
If I was you, I'd try and discuss this again with your doc. If not possible, just keep self learning and listening to others' experiences.
This is a condition that varies a lot from person to person. So we often need to take our own informed and balanced decisions.
Best of luck!
Thanks for coming back to me. All the different approaches from doctors. So confusing and overwhelming. I guess we have to listen to our own bodies & take ownership in making those decisions. I’m seeing the EP late April so I’ll talk with him again - he seemed ambivalent about the ACs at my diagnosis but GP is adamant. Long may your approach continue to work for you - best wishes.
My GP put me on Warfarin even though I only scored 1 at the time, he said that there isn't a magical switch over point when you suddenly become more at risk and it was better to be safe than sorry. I managed really well with warfarin, if Edoxaban doesn't suit you, you can ask to switch to something else. During the pandemic my practice changed most people onto Apixaban and I have never had any problems.
Thanks for the Apixaban tip Irene. Fingers crossed for the swap. Take care.
Thank you lovely people for all your responses. It gave me much to think about from people who are on this journey with me. An update - the GP has changed my prescription to Apixaban & we’ll see how we go with the side effect (chronic indigestion). I wouldn’t have known this without those that suggested it here (in fact I told a little porky and said my EP had mentioned it as an alternative!) so many thanks 
hi, silky, when I first diagnosed a few years ago my chads was nil but I was placed on warfarin straight away and it just seemed the normal procedure. After a good while my chads changed and it crept to number 1 after a high BP test at the doctors!( fair enough) after a couple of ablations my EP said he found no evidence of high BP from looking at my records of my overnight stays in hospital so moved me back to NIL score but still kept me on warfarin for a bout a year after my last ablation. He was then happy to take me off warfarin because I was having no afib at all. I actually wanted to stay on warfarin but he wouldn’t let me. I never had any problems on them and always felt safer on them than not.? Strokes from AFIB can be more damaging than other strokes and I personally would go back on them tomorrow because us afibbers are at a higher risk of stroke unfortunately.!!
Thank you for your reply and I’m glad it sounds like your ablation was a success. No AFib for a year is fab news - long may it continue!
but……!! Over the last 2 years I have noticed the odd short run of afib now and again but very rare but still afib so he’s still lurking around.!!!!!😳
Hi Silky57,
Welcome to the forum - I’ve recently turned 57 and am female but my cardiologist told me that purely being female doesn’t mean I need to take anticoagulation yet and he won’t prescribe them as he says I don’t need them. I’ve now asked him twice about being on anti coagulation and it’s always been a definite no and he says it will be reviewed when I’m 65. I’ve no comorbidities. I’m paroxysmal AF and had it for approx 17 years ( 15 of those undiagnosed) but very infrequent episodes. I’m on daily 1.25 mg Bisoprolol now and if I have an episode I’ve got fleconaide as a PIP as I have no heart issues.
I’m symptomatic AF & I managed to stop my episode this year quickly by doing a vagal manoeuvre, (which might not work again!)
I only got put on Bisoprolol as I went to A&E to get an episode ‘captured’ on a hospital ECG and ‘properly’ diagnosed.
So your episodes are symptomatic and very quick? Have I read it correctly that you have only ever captured your episode by yourself on an applewatch and not a hospital ECG? And that it’s your GP who has prescribed all your medication, based on that?
Hi Teresa. Absolutely correct on all fronts. Your situation is almost identical to mine (except no fleconaide) and your interpretation of my situation is exactly right. An EP has seen my Apple Watch readout during a private consultation and has made the diagnosis from that (to be fair the watch takes a pretty impressive ECG). GP has prescribed. I feel I am in a tailspin based on one short incident, particularly as that was immediately post a Covid infection & the ACs seem to be disagreeing with me. My Apple Watch is now set to continuously monitor for AF and I’ve had nothing since (4 weeks).
Hi Silky57,
Wow, isn’t it strange how all medics differ? An EP I saw ( privately) wouldn’t even look at my Apple ECGs and said he didn’t like them.
Did your GP prescribe your anti-coags after you saw the EP or before? Did the EP know you were on them?
What dose of bisop are you on? Are you feeling ok on it? Are you due to see a cardiologist?
Has your GP referred you to cardiology to get a monitor and proper scans, diagnosis and checks made on your heart? I had Apple ECGs for nearly a year but my GP wouldn’t entertain them at all, he said I needed a hospital ECG. Some of my ECGs were inconclusive and I would also alternate between high NSR and Afib on my episodes so I still don’t think I’ve been fully diagnosed properly. Apple ECGs are good, but I still think it needs fully quantifying if it is Afib, especially as yours was so short and you’ve had just one episode. I’m not saying it isn’t or thaf you shouldn’t be on your medication, but I do really think you should be fully checked out and investigated.
When I was at last diagnosed by A&E, I got put into a system where I waited to get all these checks which included meeting a cardiologist etc. ideally a cardiologist should be the one who decides what you need re medication and it’s only a cardiologist who can prescribe fleconaide and also as a PIP if your heart structure is sound., but as your episode was so short, you wouldn’t have needed a PIP.
I would push for cardiology referral, or try and see a cardiologist privately ? They may put you forward for all the checks on the NHS. As your episodes seem very infrequent at the moment, I’d really push for that and to get a full proper diagnosis.
Hi Teresa. I reported to my GP (telephone) after the AFib came up on the watch. I explained I had a private EP appt a few days later. Sent GP watch readings & she put me on bb (bisoprolol 2.5) and ac (Edoxaban 60) as a stop gap til then. EP looked at watch recording & was happy it was clear & definitive. He took an ECG there (which I knew would be sinus rhythm as I was asymptomatic). He said bb required but ac was borderline at CHAD 1 for female only & that many of his colleagues would say no. He agreed I would continue bb and ac if no side effects for now & review at next (NHS) appt which is late April. GPs surgery are adamant I stay on both, despite the fact I’m battling chronic indigestion since starting the regime. I’ve had palpitations all my adult life but always non-sinister ectopics. This is my one and only AFib run (as far as I know) brought on by low level exercise (walking up a hill) immediately after a Covid infection. I was symptomatic on that occasion and could tell the difference straight away.
Hi Silky57,
Mmm. It’s a tricky one. It sounds like your GP is extremely cautious and this could be a good thing - or a bad thing. I wonder if it’s the palpitations you’ve had in the past that have worried her? I suppose all you can do is wait it out until your next appointment, but if the side effects carry on, you should let them know, as you shouldn’t be expected to carry on like that.
How are you feeling on the Bisoprolol? 2.5mg seems to be the standard dose they put us on initially.
I do still think you also need to be on a cardiologist’s ‘books’ though and have an echocardiagram, 24 or 48 monitor ( I had a five day one) etc as that is what a majority of us who have been diagnosed with Afib have had. EPs are good and you may need both medics on this journey, but they are different in their approach & it’s cardiologists who usually arrange these in their clinics.
Good luck,
Teresa
hi Silky
I hope you're feeling well.
I have recently been diagnosed with PAF and put on anticoagulants as well as some for the heart. Not yet seen cardiologist or had an echo. In struggling with the meds as never took anything much before. I am under 65 with a Chad score of 1. So I feel a similar situation. Are you still on anticoagulants and if so how do you feel?
best wishes
ToadToady
Hi Toad. Welcome on board - if that’s the right phrase! I’m sorry for your diagnosis - it’s quite a shock isn’t it, but I hope you will find this forum as helpful as I have.
The first thing I’d say is you really need to discuss this with your medical team. I consulted with an electrophysiologist, a cardiologist, my GP and my practice pharmacist. I see you’re still waiting for a cardio appt and echo, so the first thing I’d say is please don’t even consider stopping taking your medication before that’s taken place so they have a full picture. If funds allow, I’d highly recommend a one-off private appointment - that’s how I got to see an EP so quickly.
The AC question is complex for people like us. We are in rather a grey area and I discovered there is a mix of opinions both within the NHS and from personal research on guidelines across the globe.
The answer to your question is that I stopped my ACs and I feel at peace with this decision, although I wrestled with it at the time. But this is personal to me: my overall health history, my AF burden, etc, not just my simplistic CHADS score.
Wishing you well Toad. Please shout if you have other questions. I know I had lots: I took a notebook to my follow up appointment with my EP this week, I’m pretty sure he was glad to get rid of me at the end!
Thanks Silky for your kind reply. I am hopeful I can ditch the ac if the cardiologist agrees. It's all fun! 😊
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