Should I be on anticoagulants?

Continuing my theme of worrying about something new every day, I have a quick question. Should I be on anticoagulants?

I'm a 37yr old male with suspected paroxysmal AF, which I could have had for about 6 months prior to diagnosis. I am currently on 120mg Diltiazem while I wait to see a cardiologist for further tests/analysis.

My CHADS-VASC score is 0, and my GP thinks I don't need to be on anticoagulants. However, the A&E team who saw me in AF put me straight on heparin (I was out of the country so they also gave me enough needles to get me home) and warned that I was at risk without it.

Like everyone, I'm worried about blood clots forming and causing a stroke. I have a few funny sharp pains around as well (in my chest and neck), which isn't helping my anxiety. Should I push to be on an anticoagulant, at least until I know more about my condition, or am I worrying about it unnecessarily?

58 Replies

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  • I am not a worrier...well not excessively... but at 37 I would be asking at your cardiology dept., if your cardiologist appointment could come forward. You can say to them you are very worried.It might work, it has done for me,if not every time. Or, in some hospital they have a cancellation list to which you can add your name.If someone calls in and cannot make it to their appoint you can slip into their slot at short notice.Worth a try.

  • I fear I may be a worrier, especially about my heart (you only have one etc.). Why do you think at 37 I should be asking for the appt to come forward? I'll call them but I can't see a reason why I would be brought forward over other people (other than by filling in a cancelled slot).

  • Hi, the sharp pain could be the anxiety but worth checking with GP. At 41 my score came back as 0. I'm no longer on anti congs my consultant said the risk of been on them is more than the risks not on them. It is something I will keep reassesses as I get older.

  • Thanks for the reply Richard75 - so you were on anticoags and then stopped? I'm tempted to ask to be on them until I know more about what my heart is doing.

  • I was on rivaoxiban but because of side effects moved back to warfarin. My cardiologist said I needed to be on them for my ablation but not now. If it was me I think I would like to be on them until I knew my heart was healthy.

  • Fair point. I'll ask to be on them. Thanks. Is Warfarin your anticoag of choice?

  • The new anti Cong are easier because you take the tablet and that is it. Warfarin is more hassle as they have to get the right level (INR) and so the dosage can be changed regularly until it settles. This will require weekly blood tests - most now do this by a pin prick and a machine gives an instant result.

    People have differing views on which is best. There are no reversal agents for the new ones however some people argue that doesn't matter. Some people prefer the tried and tested warfarin, 1930,s I think, rather than the new ones. I was happy to try the new ones but the side effects meant warfarin was the better option.

    Nothing's easy with AF is it!

  • Actually there is a new reversal agent for Pradaxa; that is why I chose that medication over some of the others. Just an FYI!

  • If your chads2 vasc score is zero then there is unlikely to be any benefit from anticoagulant and maybe risks. Isn't that the whole point of having a risk score?

  • I agree that 0 means not needed but in this case I think some of the answers for the questions would be don't know rather than a yes or no. The first day I was diagnosed I was given warfarin even though now my score is 0 and I have stopped.

    As I said above and am learning more and more every day nothing is easy with AF!

  • I was put on Apixaban before my cardioversion last year and then taken off them about 6 weeks after. As my AF has come back I'm now back on Apixaban again in readiness for another cardioversion. My score is also 0.

  • Thanks for the reply Stucoo - how have you found Apixaban? Does it disrupt your life at all (food to avoid, headaches whatever)?

  • The good thing about NOACs is that you don't have to avoid certain foods. I haven't had any side effects that I can directly relate to Apixaban, I'm currently taking Dronedarone as well and a Vit D supplement. Biggest issue for me is pain killers, can't take any NSAIDs while on anticoagulants or with AF for the matter. So its just paracetamol or codeine if really bad.

    I am still to get my head round taking all this medication - last year I took the odd Ibuprofen and that was about it.

    37 is such a young age to get AF, I'm 47 and thought that was bad enough.

    Good luck in your journey

    Stuart

  • Thanks Stucoo. I do feel particularly young for AF, but this the hand I've been dealt with, now I've got to play the game as best I can. Hopefully it can be managed or 'cured' for a bit.

  • If your risk assessment comes back as zero then taking anti-coagulants will put you at risk for no benefit. All drugs carry risks however small and taking something you do not need is foolhardy. Should cardioversion or ablation be discussed then anticoagulation will be needed for the period of treatment but other wise why ever?

  • I agree BobD in principle, I would be perturbing my body for no perceived benefit. But, the fact that I still don't have a good handle on the extent of my AF, I do think I would prefer to be on anticoags at least until I have more results back (e.g. Echo, 24hr holter). Better to be safe than sorry and all that.

  • But the point is that the risks of taking an anticoagulant outweigh the benefits if your chads2vasc is zero and risks there are.

    You can do an Hasbled score for bleeding risk but I expect this will also be zero.

    Count yourself lucky as being such a low risk.

  • You have a point Goldfish_ , and I think that once I have had a few more tests as to what exactly I have (it is *suspected* AF, but my non-AF ecgs are also considered abnormal in some way), I will be less worried and trust the chads2vasc score more.

  • So you don't even know if you have af and you're wanting to be on treatment. Come on be reasonable. One thing at a time. See if you have af first

  • Sorry, I wasn't clear. I was diagnosed with AF as it was caught on an ecg over Christmas while I was abroad. However, my GP thinks it could be atria flutter. Hence I'm pushing to see a cardiologist here

  • That's why, since I haven't seen a specialist, I'm wondering if I should have remained on anticoagulants until I know the results of an echo and 24hr holter that were performed either side of Christmas.

  • Bob, what you say makes good sense, my question is, when you have AF, no matter what the Chads score is, isn't it the case that there is blood left to get sticky in the chamber of the heart which can be fired out as a clot at any time, causing stroke risk. This will still happen no matter your age, or score. Am I missing something?

  • data does not support your theory. As Dr Gupta says in his video it is not the AF that causes the stroke but the company it keeps. Thus if you have no other cardiac issues or co morbidities you are no more at risk than anybody else.;

  • Bob I am sure you said at one stage that you believed a school of thought that all people with AF should be on anticoagulant therapy? I am glad to see you offering evidence based advice but did this used to be your view and it has changed? Just curious. Some opinions and comments regarding stroke possibility on this forum used to scare the absolute life out of me.

  • That school probably still exists Vony. The fact is that the whole treatment of AF and also stroke prevention in AF is in flux. We are only 20 odd years into treatment of AF for goodness sake and until 2007 nobody mentioned the stroke risk to me! Until I was booked for ablation I was never put on anticoag even though retrospective CHADS gave me a score of 2. Chads as it was then became CHADS2VASC and refined the theory but most experts still understand this is far from perfect. It would be lovely to have a more foolproof flagging system for stroke risk and given time that will I am sure happen likewise for people who do not have AF ie the population in general. As i have mentioned before CHADS2VASC only comes into play when you have AF at the moment although I agree that it may be useful for others. What I do still believe is that if you have a risk you never lose it and even successful ablation does not negate that.

  • Yes I am aware of the above history and information. But did you not used to believe everyone with AF should be anticoagulated though? Just curious as I noticed your advice this evening re. Chadsvasc? I recall that yourself and Anticoagulatenow had strong views on this issue?

  • I am always guided by current thinking on these subjects Vony. You may recall, if you study my responses, that I usually pointed out that many people thought etc etc. Despite what you may think I do not always promote my opinions rather consensus, the exception being ablation of which I am an unashamed fan. Should ablation eventually prove to be not as effective as thought then even this may have to change.

  • Bob I realise that you are very committed to being a volunteer on the forum and that is wonderful. But I distinctly remember you writing that you disagree with the guidelines and that the guidelines should say "any arrhythmia = anticoagulant". I remember this so clearly as I was petrified at the time about stroke risk and was not on anti coagulation. I showed my cousin your comment as she is a coronary care research nurse and she also showed her colleague who is an arrhythmia nurse. Both assured me that there is no evidence to support that any arrhythmia should equal anti coagulation. Maybe you have changed your views on this issue which is fine but you most definitely promoted your own opinion and views at that time which were not in line with current evidence. Regards.

  • Don't really know what you are trying to prove Vony but just in case you didn't see it, a new post just now from a person of 47 who has had a stroke/ TIA due to not being anti-coagulated. One can never win and I will not take this thread any further. We are what we are when we are.

  • Not trying to prove anything Bob. Was just genuinely interested whether your opinions on the chadsvasc had changed as the above comment is different to what you have did in the past. Am not sure what the 47 year old having a TIA has to do with our conversation? This example does not indicate that Nice guidelines are wrong. It is a terrible thing for anyone to go through but hopefully a rarity given the current practice. My 43 year old brother had a serious internal bleeding on wayfaring.. With a low Hasbled score.. Terrible... But a rarity and doesn't indicate warfarin guidelines are wrong. Anyway, we both ultimately seem to agree on this... We accept that current evidence is what it is but of course that is not without some fear for many AFers regardless of chadsvasc score (including me). All I was honestly wondering was whether your views had changed. Best wishes

  • Sorry for all the typos... New phone... Predictive text grrrr

  • I think the thing to take from this is to get yourself referred and see a cardiologist as soon as possible. 10gingercats is right push and ask questions about how to get seen quickly.

  • The more I read about blood thinners I am beginning to think everyone over 30 years old should be taking one! LOL

  • I think A & E are over reacting. I had the same needles when I went abroad but that was when I had had a diagnosed blood clot already and well before Lone PAF popped its head up. I then had the improved heparin needles 2 weeks ago but again that was only after A & E had run the Deedimer blood test (to indicate if a clot is there) and my result was inconclusive, so they played safe prior to an ultrasound check ruling it out.

    On a separate note AF usually results in increased anxiety (you are showing signs) and with me it was bordering on depression before I took action. So spend some money (£150-£200) and see a cardio next week - the peace of mind is worth it. I am 63 and stable on just Fleacinide with anti-coags (NOAC) prescribed but only as 'Pill in Pocket' in case AF starts and doesn't resolve after a few hours; I am also CHADS 0.

    I hope something there helps.

  • I'm definitely anxious. I've booked to see a cardio tomorrow evening. Hopefully I'll get some answers!

  • Brilliant Pikaia, always move early with AF!

    I am afraid you will need to do lots of homework. Also the right decision for you may take some time to tease out. I saw two cardios, an EP and an Alternative Practitioner before I found a successful pathway (combining all their advice and my own gut feel) enabling me to postpone an ablation until the success rate gets into the 90%+ range.

  • Interesting alternative practitioner,where did you find him/her any recommmendations

  • I would say do a bit of googling for ones in your nearest city to check their credentials, pick a high profile well experienced and expensive one, make an initial appointment and only go ahead if you trust them. Recommendations are not easy to do as it may not work for you and you may not be in my area.

  • I guess I am asking what to search for is it naturapath, or ???

  • Yes

  • Thanks 😀and good morning

  • Excellent- let us know how you get on.

  • I agree. Just go and see a cardiologist privately. You won't get any anticoagulant prescribed with your story so far anyway and as mentioned the risk to you while waiting is virtually zero.

  • With AF, your risk of stroke is undoubtedly increased. It's true that at 37 your particular risk is lower than someone 60+ with AF as the Chads matrix has shown you. Nevertheless, you are at higher risk than your friend of similar age whose only health problem is a winter cold! Clearly you are anxious about stroke - and why not? - so I would see nothing wrong in discussing a prescription with your cardiologist/EP, for peace of mind if little else. Your risk of developing a bleed from taking ACs is probably also very low - that's the downside of taking ACs of course though it's not a 'simple' balance. Generally, the risk of clotting without ACs is much higher than the risk of bleed with ACs, except perhaps in the very elderly where the risk tends to even out.

    If you decide to go ahead, then apixaban is statistically the most effective on the market though it's a 'twice a day' regime unlike unlike second best, but still very effective, rivaroxaban. Both have a 'hassle factor' way below that of Warfarin.

    Good luck.

  • You can reduce your risk of stroke just as much as an anti-coagulant through lifestyle changes. That means weight in the ideal range, waist less than half your height, lower blood pressure, lots of fruit and veg, stopping smoking, low to moderate alcohol consumption, etc. Those changes reduce your risk by 70%.

    Of course you might do all those already in which case you're probably OK and as Bob says, anti-coagulants will add risk for little benefit.

  • Thanks, that's reassuring. I have and do all the things you're suggesting, so my risk should be low.

  • You don't need anti coags for any CHAD score under 1. Even if you had persistent AF you would not be prescribed. It is worrying when you first have arrhythmia but as time goes on it's easier to take a more relaxed approach. Be reassured that your risk of stroke is very low with your score, which is because you are young, male and no high BP. If I feel anxious I pay to see my cardio, so seen within a week and mind at ease. Worth every penny!

  • Thanks. I've booked an appointment for tomorrow night so hopefully I'll have some answers.

  • Are you considering an ablation? Usually when yone is so young and has afib an ablation is offered as opposed to meds, since afib usually gets worse. i know three very young people who had afib and got ablation because they didn't want to start down that medication road. I'm 60 and am taking diltiazem for rate and Pradaxa to thin blood, and I'm scheduled for an ablation in hopes that it will be one and done and I could get off meds. Have you and your EP discussed that option?

  • I have read studies that ant-arrhythmic drugs such as Diltiazem can make AF worse, if it is vagal AF, or if you do not have AF at all. Read this statement again. You should look at the Sanja Gupta anticoagulant video mentioned by Bob. I would not take any drugs until you know what is really happening with your heart. Not all doctors, even the specialists, know the best way to treat your AF, if you actually have it; since it is so difficult to treat, so don’t assume they do. You will need to choose what you think is your best treatment option. From my experience, sometimes drugs can make it worse. If the cause is not in the heart, this could be why.

    You will not likely see much about the spine and its performance being the possible cause of AF. After quite a few months of experimentation, chiropractor treatments, and paying attention to what my heart does, I know for a fact that my vagal AF is caused by nerve issues in my spine at C1 and C2 and T1 and T2 vertebrae. If you can find a chiropractor open minded enough to check this for you, you may have the solution to your problem. The cause of AF is not known. Heart doctors treat the symptoms as is done for many health issues for which the cause is not determined and this works for many people; and of course this is why it continues to be done. I know of at least two chiropractors who know that fixing the spine will stop AF. One thinks the cause is people being on devices with their heads lowered for long periods every day. Maybe this is why AF is becoming an epidemic. This could definitely be the cause for me. There is lots of money to be made applying current solutions. There is no money to be made in chiropractic solutions. Kind of like the vitamins versus drug scenario. Good luck and keep researching.

  • Devices - Not to mention that some feel that the Electromagnetic radiation emitted by phones, tablets (EMF) can cause AF in and of itself.

  • Oh, I should mention, if chiropractic is a solution, a few or many treatments may be necessary to achieve a satisfactory result. Probably, as we age, more damage is done to our spine. Since there is probably not a lot known about this approach, finding the correct procedure may be a bit hit and miss. Maybe some day the correct procedure will be known and taught. At this point, I can only hope. I suspect if someone is already taking heart drugs, this could hinder knowing if the chiropractic efforts have been successful. This is why, in your case, it may be wise to forego drugs until chiropractic is explored. One visit to a competent chiropractor will tell you if there could be issues with C1 and C2 or T1and T2.

  • Oh yes, C1 and C2 impact the parasympathetic vagus nerve and T1 and T2 the sympathetic vagus nerve. The parasympathetic slows the heart and the sympathetic speeds it up. If a chiropractor does not have this knowledge, you may wish to find one who does.

  • I had some of that worry as well. They put me on "The Warfarin rat poison." Helped but barely could trudge across the office on it. I'm a natural herbal type of guy so I did research and I'm off Warfarin and "on" Natokinase 2400 (1/day), Tumeric 1046mg (1/day), Vitamin "E" 400 IU (2 each/day). Seems to be working. I also eat 1 garlic clove/day.

    All of these thin the blood but of course are not the recommended method and can't be measured like Warfain INR. I Can tell you that it takes longer for my blood to clot when I cut myself, but still clits reasonably fast. I'd say it takes about 3 times the normal time to setupas b4 taking all of these. I take the natokinase because it is proven clinically to actually DISSOLVE clots as well as help prevent them.

    1 of the many links you can find and read about natokinase smart-publications.com/arti... What Is Nattokinase?

    Nattokinase is a potent fibrinolytic (anti-clotting) enzyme complex extracted and highly purified from a traditional Japanese food called Natto. Natto is a fermented cheese-like food that has been used in Japanese culture for more than 1,000 years for its popular taste, and as a folk remedy for heart and vascular diseases. Research has shown that Nattokinase supports the body in breaking up and dissolving the unhealthy coagulation of blood. In fact, it has been shown to have four times greater fibrinolytic activity than plasmin.4

    webmd.com/vitamins-suppleme...

  • Possibly. Make an appointment with an EP.

  • Hi all, just back from the appt with the cardiologist. He's confirmed I have AF and perhaps also some atrial flutter. He's surprised it's in someone so young but there you go. He was quite negative on the idea of ablations and has taken me off the Diltiazem and prescribed Flecainide. On one hand I'm relieved to have a confirmed diagnosis, on the other, disappointed to be consigned to a life on medication. I'll see how it goes and perhaps arrange for a 2nd opinion from an EP.

  • At least you are now in the system. Diltiazem controls the rate of your heart whilst Flecadide the rhythm. Did he explain why ablation was not his preferred option? If he was private can your GP still refer you to an NHS one? Are you still waiting echoes etc?

  • Thanks. He said that ablations only have a 40% success rate. I'm certainly going to get a second opinion.

    He analysed my echo, and has also suggested an MRI and CAT scan of my heart, to make sure nothing else is going on, since my 'normal' ecg also shows borderline abnormalities. All of this will be back on the NHS. I'm still booked to see an NHS cardiologist in February, although I don't know if that's still possible since I'm going back into the NHS with the private consultant. I need to talk with my GP.

    It's so good to be able to talk with you all on this forum, to get second opinions and to hear from everyone's experience.

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