Natural Anticoagulants v prescription - AF Association

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Natural Anticoagulants v prescription

Bebbe
Bebbe

Hello, I am 52 & I’ve been diagnosed with paroxysmal AF & recently had my second bout of it, went back to sinus rhythm after 6 hours. I am wondering if anyone with a chadsvasc score of 2 has declined prescription anticoagulants in favour of natural anticoagulants, if so, how is the efficacy measured? Or is there another forum that this question would be better suited?

Many Thanks 😊

89 Replies
oldestnewest

I did this early on in my Afib 'career'. Took Hawthorn. Then had a TIA....embolism related.It did not take me long to realise how silly I had been .

None of us like being on anticoagulants but nothing else has that much 'certainty' of keeping us safe.

Bebbe
Bebbe
in reply to 10gingercats

Hi I’m sorry to hear you’ve experienced a TIA/embolism. I agree it is a risky road to go down if using natural herbs. As excellent as Hawthorn is for heart health I didn’t think it slowed clotting time? Anyway life’s a journey & we are all learning! Thanks 😊

Hello Bebbe, I think this is probably a good forum for responding to your question, that said, I have now knowledge, or to be honest, any interest in the use of natural anticoagulants. When DOACs were first introduced, the forum was inundated with questions from members concerned about the lack of INR testing and without doubt, this would be an issue regarding natural anticoagulants. Having a serious life changing stroke as the only way of knowing whether they work or not sounds a bit of a no brainer to me, but others may have different views......sorry if I sound negative!

Bebbe
Bebbe
in reply to FlapJack

Thanks for your response & I can understand your reservations especially with what you’ve experienced. It’s early on in my journey & only being 52, the thought of taking life long anticoagulants is a huge thing for me so I have to research all the options & there are many natural blood thinners! The problem is knowing how effective they are as pharmaceutical companies have no interest in ‘natural’ remedies unless they can synthesise them £££. 😊

Dawsonmackay
Dawsonmackay
in reply to Bebbe

"It’s early on in my journey & only being 52, the thought of taking life long anticoagulants is a huge thing for me so I have to research all the options & there are many natural blood thinners!" My wife, who is a nurse, has told me dozens of times that people who have been diagnosed with Afib are in no such place to medicate themselves. The reason why she keeps reiterating that is because STROKES are so damaging and in a large % of cases can take away one's autonomy and, worse, forces that person into institutional care. Autonomy equals independence: where one can walk down the street and make daily decisions. You want to trade that freedom for the uncertainty of ingesting natural blood-thinners? First of all, a natural blood thinner may have an infinitesimal amount of the necessary blood thinner, not nearly enough to thin the blood and you would have to take huge quantities of the substance everyday (maybe every hour) to equal a pharmaceutically approved blood thinner. As an example, let's talk about malaria for a moment. The top line treatment for malaria is quinine, or today a quinine derivative. In the old days, like in 1790, the treatment was to pulverize a bark from the cinchona tree, mix a quantity of it with hot water, seep it, and then drink it like a tea. As you know quinine is bitter but the cinchona was so bitter that many times the user vomited, so liquor was added to the tea substance to make it more palatable. Some times the tea helped (and one had to take it three times a day for weeks) and it took a long time to figure out (1826) what alkaloids in the cinchona bark were effective in killing the malarial parasite. Users of the bark suffered from ringing in the ears to deafness to other serious and life-long afflictions. The modern blood thinner will definitely stave off a stroke in one little pill and not cause other afflictions, although one might have to change some habits because of the bleeding factor. The reason why there are not many blood thinners on the market is because they are exceedingly difficult to manufacture and some of the newer types have a 12 hour half life so that we are not in imminent danger 24 hours a day. I cannot imagine a more devastatingly insecure way of researching "all the options," albeit putting yourself in unnecessary risk for an untried and unsafe modality. Pharmaceutical companies have spent billions to manufacture anticoagulants and, more than likely, have looked at all the ingredients in the natural blood thinners when devising their own type. I doubt you're a billionaire, so please, for your sake, please, take care.

Bebbe
Bebbe
in reply to Dawsonmackay

I appreciate your advise. It may be that I do go on Anticoagulants? No I am not a billionaire & even if I was I’m not sure that would change the dilemma. Pharmaceuticals spend millions to make billions & this is just as, if not more important to them! Pharmaceuticals also ‘lie’ about side effects & are being sued all the time as a result! Suffice to say that I do not trust them, that said I may have to re-evaluate my decision & this will be based on some up upcoming blood test that I will have done soon.

Dawsonmackay
Dawsonmackay
in reply to Bebbe

many pharmaceutical spend billions but I understand you too. Glad that you are re-evaluating.

BobJ52
BobJ52
in reply to Bebbe

Hi Bebe

NOACS... no brainier, alternative risk is too high

I can appreciate your point of view but it a high risk strategy however diagnosed with PAF in October and straight onto NOAC Apixaban. No side affects at all and total piece of mind. My biggest fear is surviving as a vegetable , not dying from heart problems or Stroke so no doubt of the right choice in my mind.

Good luck with whatever choice you make!,

Bebbe
Bebbe
in reply to BobJ52

Thank you BobJ52 I really appreciate your response! 😊

secondtry
secondtry
in reply to Bebbe

I appreciate where you are coming from as I am 66 and so far have turned down ACs. Incidentally, can I ask which blood tests you plan to take?

The problem I have in taking ACs...... there is IMHO almost certainly going to be side effects and I have never read any convincing stats on prevention with and stroke without.

Bebbe
Bebbe
in reply to secondtry

Perhaps someone with more knowledge could respond to this?

Thanks for your reply secondtry, yes I am waiting for another clotting screen as the one I had on Saturday last I had differing views from the medics one saying my blood was too thick the other saying it was too thin 🤷🏻‍♀️ So I’m waiting to see the cardiologist now for some clarity!

Lilypocket
Lilypocket
in reply to Bebbe

Blood thinners are not the same as anti- coagulants😉

Thanknyou for the information very useful x

Bebbe
Bebbe
in reply to wilsond

UPDATE!

Blood ok although on one test marginally too thick but cardiologist states it’s normal & tomorrow could yield a different result. I have officially caved & will now commence anti coagulation & anti rhythmic meds. This may only be for a year we’ll see... here’s hoping to no/minimal side effects 😐

Hello Bebbe - Natural anticoagulants have had no trials or trustworthy evaluations done as to their effectiveness - which, when you think about it is ethically correct. Who would seriously test them in the face of a possible damaging stroke? So, if we want to have a drug which has been tested, used and reported on then one of the prescription anticoagulants is the safest bet we have.

I was horrified at having to take Apixaban, but if it helps to protect me against a stroke, then so be it. We have discussed this question quite a lot on this forum and if you search the top right box with key words, you'll be able to pull up other discussion threads.

Yes there have been small studies which definitely show that certain supplements do have anti thrombotic effects on the blood, Curcumin is just one (pub med) sorry not good with links. If there is an alternative to conventional meds why shouldn’t it be studied especially if the initial results are promising?

I will look on the forum for more info thanks 😊

BobD
BobDVolunteer

What you suggest is akin to playing Russian Roulette in my view. Since there is no way of testing efficacy or such products there are huge risks. Only last year a poor man died after trying his own version made from "natural products" when doctors were unable to stop his massive internal haemorrhage . For most of us here I think anticoagulation is our new best friend.

At your age and with a score of 2 you are already at much higher risk than many so please accept this advice with the same grace in which it is given.

Bebbe
Bebbe
in reply to BobD

Interestingly, the European Society of Cardiology says that with a score of 2 anticoagulants should be ‘considered’ they are not recommended. I’m not sure why you think I’m at such a high risk when my cardiologist has said my risk is low with a score of 2 & especially as I’m only 52?

I am very torn & we can always make a more informed choice in retrospect, it’s a tough one for me personally.

Kaz747
Kaz747
in reply to Bebbe

I’m 55 and have a score of 2 - 1 for being female (which doctors have said isn’t really a full point anyway- more like 1/2 or 3/4) and 1 for having a history of hypertension - even though my BP is now 110/70 (had high BP and preeclampsia in my pregnancies then some unstable BP when my arrhythmias started). I am fairly low risk going by the calculations. Doctors however had to abandon an ablation 17 months ago because they found a blood clot in my heart. So I’m sticking with my anticoagulants.

Bebbe
Bebbe
in reply to Kaz747

Wow that was unfortunate I totally get that!

wilsond
wilsond
in reply to Bebbe

Having AF automatically increases our chances of a stroke by 5 fold. Can I ask what your worry is regarding anticoagulants? Are you concerned about bleeding risk? Xx

Bebbe
Bebbe
in reply to wilsond

My risk is apparently 2.4% I simply don’t want to be on life long medication at the age of 52. I appreciate medication has a place undoubtedly, yes I am worried about side effects & over time have read that they irrevocably change the way your blood clots & long term this is not reversible although I will confirm this with my Cardiologist. Thanks for asking 😊

carneuny
carneuny
in reply to Bebbe

Stop worrying about side effects ....... start worrying about a stroke. Remember an AF originated stroke is likely to be fatal ....... then you don't have to worry any more !

Why not just ignore all this and do your own research on strokes that originate from AF - reduce the exercise to statistics not emotions and form your own opinion.

I started Warfarin at 65 am now 75 plus a bit - so when I started ............so I was 13 years older than you when I started - its my new best friend.

So at 52 you must be assuming you'll live to 92 but carrying on with natural stuff you could be outta the frame by 62 .... so then what ?

Good luck.

John

Bebbe
Bebbe
in reply to carneuny

Wow!....easy tiger, we all respond emotionally to situations & I am trying to balance this with risk & a level head! FYI my cousin had two strokes attributed to AF & thankfully both were minor & she made a full recovery so I’m not sure where your info on strokes comes from ‘likely to be fatal’??? I know they can be disabling & even life changing. However a proportion are not & the outcome would depend on several things I’m sure!

carneuny
carneuny
in reply to Bebbe

The resource was Anticoagulation UK. One of their articles in their magazine. Can't remember when.

wilsond
wilsond
in reply to Bebbe

I was 53 and still glad to get onto meds. Get as much info as possible from a range of sources xx

Bebbe
Bebbe
in reply to wilsond

👍🏼x

BobD
BobDVolunteer
in reply to Bebbe

Just to clarify the risk you quote is per annum so at five years that is 12% and at 10 years 24%. Not many seem to realise that.

Bebbe
Bebbe
in reply to BobD

Yes I realise it increases each year, thanks BobD.

BobD
BobDVolunteer
in reply to Bebbe

You can always stop anticoagulants but you can never undo a stroke.

I wouldn't risk it

I wanted to get onto prescription anticoagulants. Very strong family history of AF / strokes...plus I was female plus high BP. Was told my gp doesn't anticoagulate Chad 2... Then I had a TIA. Thankfully hospital did.

I can understand your thinking but it's just too hit n miss for me with natural methods even though I believe in self help . Are you worried about a particular aspect of the neds

Bebbe
Bebbe
in reply to wilsond

Thanks Wilsond, yes side effects. It’s nice to hear that some at least appreciate where I am coming from 😊

wilsond
wilsond
in reply to Bebbe

Ok .....now my brother is a biologist...not a Dr but can explain things to me sometimes.

Side effects are minimal on the newer anticoagulants such as Apixaban.

They do not "thin" the blood,they slow down the clotting process. As they have a short active effect,the drugs leave our system after 12 or 24 hours depending on the type you take. So your blood composition reverts to pre meds.

This is why it is important to take them regularly by the way.

Bleeding risk: I am quite creative and also accident prone and have cut myself several times,and bumped my head very hard. Each cut took slightly longer to heal and had no Ill effects from head bump( checked out in A and E)

I do look after my health generally with good and varied diet,which has no restrictions or cautions with newer anticoagulants,and I believe manageable in any case with Warfarin. I still eat garlic,tumeric,ginger ,herbs etc but not in very very concentrated forms.

Wishing you the best in your information seeking! Xx

Bebbe
Bebbe
in reply to wilsond

Thank you for the info..perhaps I can continue my magnesium, kyolic Garlic & turmeric if I commence Apixaban 😊

DIB69
DIB69
in reply to Bebbe

I think I was as reluctant a you to begin one of the new anticoagulants, worried about side effects and the possibility of being on a lifelong med. I resisted for a while but the over riding concern about strokes prompted the decision to take rivaroxaban. I needn't have worried as I've had no side affects....at least not so far and one year on. I eat whatever I like; a diet that includes garlic, turmeric, broccoli and ginger and I take magnesium daily which I feel has helped with the symptoms of AF.

Kingsley09
Kingsley09
in reply to wilsond

Hi I’m very interested in the fact that you say you still eat turmeric and ginger as I’m on apixaban and since then have stopped both of those which has caused me problems as I have peripheral neuropathy and was using them to help me with nerve pain relief but was told at the anticoagulant clinic not to take them anymore so I’m wondering how long have you been taking an anticoagulant and how much turmeric ( I did take it in powder form mixed with milk) do you take a day as I’d like to start taking it again as I am struggling with a lot of pain since stopping turmeric one nurse did say try it and see if you start bruising or have any gum bleeding as she new of people taking omega 3 and have been ok but they also tell you not to tale that as that’s a blood thinner thanks for any reply

Peileen
Peileen
in reply to Kingsley09

I have recently started Edoxaban, this week, and have been scouring info on contraindications. I found turmeric was not good to take with Edoxaban which is disappointing as I was taking a teaspoon in my smoothie every day for arthritis. I've also stopped a garlic tablet, St Johns Wort (for SAD in winter) glucosamine and chondroitin and fish oil omega 3 capsules. I'm taking no chances even though these supplements have been beneficial for my arthritis. However, I have started Co-enzyme Q10 and L-Carnitine, both safe with anticoagulants and of benefit if taking statins.

majjic
majjic
in reply to Bebbe

I can appreciate your not wanting side effects but they usually go away when your body has adjusted....I was diagnosed with PAF 18 months ago and i would no way take anything other than anticoagulants....It's too risky and i like living too much.

Despite a lot of pressure from various medics, I resisted anticoagulant meds for several years after being diagnosed with AF. One reason for this was that I thought, like many, they were blood thinners and I felt that I already bled easily enough although I was informed my clotting factor was normal. I was also opposed to medication on the grounds you outline and took Hawthorn and various other remedies. However, I have learnt on this forum that they are NOT thinning the blood but preventing the blood clotting. My Chad score is 2 as I am female and 73 and I was put on Rivaroxaban when I was hospitalised in Madeira a year ago, not because of a stroke fortunately. It has proved not to be as bad as I feared. It is hard to know if there were any side effects as I was started on various other meds at the same time. I have had a couple of nose bleeds since starting but I did occasionally have them before. I am also seem to be quite good at acquiring cuts, mainly on my hands, which do bleed but I don’t think any more than they ever did. I know from my working life the damage that a stroke can inflict and whilst I sympathise with your dilemma, it is almost certainly not worth the risk. However, we are all different and have to make our own decisions about these matters.

Bebbe
Bebbe
in reply to Crystalbowl

Yes like you say we are all individuals & it is a difficult decision to take. I know they don’t thin the blood they just slow down the clotting time. Thanks for your advice

Going on anticoagulants is a difficult decision to take. However, AF increases the risk of stroke and strokes in those with AF are often more catastrophic.

I'm much younger than you and I have infrequent AF (e.g. in 4 years I've had maybe 5 episodes longer than a few seconds). However, a whole team of cardiologists were united in suggesting to me that anticoagulants were a risk worth taking (in my case). Balancing the risk of a serious fall in someone of my age with the risk of a stroke in someone with my unique heart scarring, they were unanimous. They were honest, they couldn't put any numbers on the risk, but they all thought that, on balance, the risk of a stroke without anticoagulation was higher than the risk of a serious fall.

Taking anticoagulants has risks, but I don't want to mess around when I have an increased risk of having a stroke.

Bebbe
Bebbe
in reply to Pikaia

You have to do what is right for you balancing all the risks & advice given by the professionals. My cousin has AF & it was persistent for a year & she sustained to very minor strokes, thankfully she has fully recovered.

Pikaia
Pikaia
in reply to Bebbe

Indeed. It's a tricky decision and one you have to be happy with.

Thanks for all your comments I have much thinking to do.

Jalia
Jalia
in reply to Bebbe

Just to add my tuppence worth.....i was put on warfarin when I was not very much older than you are and I'm now 75. I've had no problems. I have my own testing kit which saves trips to the surgery for blood tests and puts my mind at rest.

I would absolutely hate to stop warfarin ..I consider it to be my friend.

Bebbe
Bebbe
in reply to Jalia

It’s encouraging to hear you’ve had no side effects. Historically when taking medication I do suffer with side effects. We’ll see how it goes 😊

Hi, my advice take it as soon as you can and keep taking it, no natural thinners have any real science behind them whilst a noac will reduce your risk massively.

Andy

Bebbe
Bebbe
in reply to Andyc934

Thanks for your advice Andyc 😊

What’s the issue? I can’t see what’s wrong with taking a life saving drug. I took mine when originally prescribed without a thought. I don’t fancy dying.

I was 52 when diagnosed.... you keep saying ‘only’.....

So you gotta lot of life to live.... the drugs are gonna assist with that.

It’s a no brainer....

Bebbe
Bebbe
in reply to LordGabriel

We all have different perspectives & of course I want to live! For me personally it needs careful consideration for several reasons some of which I’ve posted on this forum!!

Hi I saw my cardiologist yesterday who confirmed he would recommend me staying in Edoxiban anti coagulation for life with a Chad vas score of 2. I'm 65 with mildly raised BP that's controlled with amlodipine. I had PAF for 2 years until recently undergoing a cryo ablation. I'm still in the blanking period so we are not out of the woods yet but he said the risk of stroke was still significant enough to warrant blood thinning for the foreseeable future

Bebbe
Bebbe
in reply to Hammerboy

Thanks for your response good luck on your journey!

Hidden
Hidden

Opposite to you - had to fight to go on anticoagulants as score was 1 but only 6 months short of being 2 as I was 64 on diagnosis.

Pharmaceutical companies get a very bad press & it’s easy to focus on the negative, but consider - for every drug that makes it to market, there are hundreds that never do because of strict controls, requiring billions in investment with no return. So called ‘natural medicines’ have no such controls and can cause just as many ill effects.

I feel safe on my twice daily dose of Apixaban & regard it as my ‘comfort blanket’

Guess we are all different

Take care

Pat x

Hi Bebe. I’m 52, with a score of 1. I started with AF at 39 years old and thus far have not been on blood thinners. This is on the advice of many doctors over the years. I have even received electrocardioversion without blood thinners. The good folks on this forum have expressed concern many times and given extremely good reasons for taking the blood thinners, and actually have significantly eased the worries I used to have about taking them - however when I told my EP this (Blackpool Cardiology) I was told that there was another factor, which was frequency and duration of the AF. Over the last 13 years, I have had AF 13 times, the longest duration was 36 hours, the shortest about 2 hours, the average is about 4 hours.Every time bar one intravenous drugs reverted me and the last time as I said was electrocardioversion. The EP said that the length of time in AF might cause blood to clot and the return to SR might cause the clot to be dislodged and enter the blood stream proper.

So for me, with an average of being in AF for 4 hours a year, who has to go to A and E each time it happens, the risks of a blood thinner outweigh the risks of not taking a blood thinner- and I’m ok with that, although I’m always asking whether things have changed because of the advice I’ve received here on this forum.

However, if I was the sort of person who flicked in and out of AF regularly, medicating at home, I would absolutely be taking the advice and even with a score of 1, I would certainly be very thankful for and taking my blood thinners.

I hope this helps

Thanks for this Rhiannonimity1 😊 that extra factor needs to be considered for sure I’ve only had two bouts 10 months apart. So are you now taking anticoagulants?

Hi Bebbe. No. I am still not on blood thinners. My score is still 1 and I haven’t had an episode of AF since April 2018. It appears I have found a trigger to the AF and avoiding the trigger is helping me keep the AF at bay. I am under no illusion and know that the AF will likely return, although if I can lose weight, it will help me.

Under normal circumstances AF becomes more frequent as time rolls on. As I said I was scared of anticoagulants and I recognise now that the fear was unwarranted and that we should be so greatful these are available to us. As you read further you will see that if your condition improves, you may no longer need to take them, although people seem to as a precautionary measure. You may also find that different doctors have different opinions on this, which makes the decision harder.

Ultimately AF and anticoagulants are unlikely to kill or seriously disable you, however a stroke is absolutely a known risk and too serious to be disregarded. Your risk between now and your next bout of AF is minimal because your heart (presumably) is beating normally. In my view if you are aware when you are in AF and like me need hospital treatment to revert you don’t necessarily need to decide until the next attack happens and my decision would be different dependent on if the next attack is in 10 months or in 1 month.

Also do you have a clear and obvious trigger that you can avoid to hopefully push back on the AF. Has it been caused by alcohol or weight issues ? in which case you may be able to make lifestyle changes which again cause a lengthier time between episodes.

All things to look at. Sadly the evidence is that AF becomes more frequent over time and I think that if you do decide against the anticoagulants for now, you should review this decision whenever you have an episode.

I would also say that this is just my personal experience. I’m no guru and there are plenty of folks on this site who have a huge amount of knowledge and expertise and some of whom have indeed expressed concern that I’m not on anticoagulants, particularly when I was given the electrocardioversion.

All the very best.

Annie

Hi Bebe,

We think alike and I am in complete agreement with you...... I have fought most of my life against drugs for all the same reasons, pharma companies, side effects etc etc. I am sensitive to drugs, and as a clinical nutritionist always try to find a natural alternative, mainly nutritious, to fight any disease.

Now 60 and officially diagnosed with AF just 3 months ago after an 8 hour visit to A and E with breathing difficulties and an HR of over 220. It was scary and I had to think very seriously, and quickly, as to whether I should agree to all the drugs (including Apixoban) which were recommended. Because of my condition it was a bit of a no-brainer and I have now settled into a small drug regime which at present is making me feel pretty yucky but I think there are occasions when you have to go with what is tried and tested. Yes, I hate the thought of being on drugs for the rest of my life and yes I will continue to look at other ways to overcome the condition, but there are times when you have to accept the expertise of others and go with their knowledge.

I think we need to be very careful about self subscribing herbs as most drugs are originally derived from natural ingredients but in the herbal form are unmeasured quantities as far as their physiological effects are concerned and they too can have side effects.

I have discussed everything with a very sensitive and sensible AF nurse who knows I don't want to take drugs - we are all individuals and all have different experiences of AF but thinking with head over heart (doesn't happen very often in my case!) I think I am going down the right route for now and, being the eternal optimist, I hope that things will get better and I will be able to reduce my intake to the minimum over time. It's a tough choice but I think going with the drugs is the right one until more research discovers what the cause of AF is and we can work with that, rather than just applying the bandage of drugs. Good luck with it all and if you want to chat only too happy to join you!

Bebbe
Bebbe
in reply to zyxv

Thanks so much zyxv (my predictive texts changed your name to zucchini 😄) I really appreciate your reply & I am leaning towards Apixaban myself but need another clotting screen as the results may make the decision much easier! I will post an update thanks again!

Having just seen JohnBoy’s recent post on another thread I always think it ironic when one person needs to battle to be prescribed anticoagulants, even with a previous AF stroke, when another member is so hesitant.

Anticoagulants seem to cause this polarisation and I do understand the hesitancy as looking back to 2013-2014 my own posts reflected similar sentiments to Bebbe’s. But tracing back to the real, underlying concern is essential. Fear of side effects? - well you won’t know until you try. I have all sorts of reactions to all sorts of drugs and cannot take any heart drugs now - but had absolutely no problems with the modern anticoagulants - I did refuse Warfarin though - mainly because at the time we were travelling a lot and I wasn’t going to be available for INR testing and unless you are able to keep your INR within therapeutic range it’s not efficacious.

6 years on, much more knowledgeable and experienced I wouldn’t hesitate in saying if you have AF, even if you score 0 and being female I never will, then why risk a life threatening/life limiting event such as stroke.

When diagnosed my risk was calculated as 1/10 at that time. Obviously the risk increases annually - it does not remain at the original risk level - so I really don’t understand with a score of 2 your risk level has been scored so low as I have just done the calculation and I made it come out at 6% for 5 years. My current risk is now 21%.

If you really want to investigate alternatives the only substance I found when I did my research 5 years back was a Japenese seaweed extract but it wasn’t found to be reliable enough. There is a certain amount of research going on for extracting compounds from seaweeds that show anticoagulant properties but as far as I can see it is very early research and not showing much promise.

Many foods such as garlic, ginger, fish oils, seaweeds etc do have some anticoagulation properties but because they are all adaptagens it’s not a good idea to rely upon them for AF stroke protection.

Bebbe
Bebbe
in reply to CDreamer

Thank you CDreamer! I appreciate your response & I know in my heart it’s likely that the supplements I am taking will just not cut it & the worry is how to measure this over time because you can’t really! Although I had thought of having clotting screens every so often but I’m not sure it’s as straightforward as that.

I was diagnosed 10 months ago & had my second bout of AFib last week & my left atrium has become severely enlarged possibly as a result of intermittent hypertension. I’ve had an Arrythmia (not af) for ten years but was not diagnosed after a holter monitor showed this. I’ve made lifestyle changes but cannot get the damn BP down without meds & still do get readings a little high so I do need more tests. It’s tough but I have to make a decision very soon & a recent clotting screen showed that my blood was too thick according to a nurse and too thin according to a doctor on my recent trip to A&E shocking that I didn’t get correct info so I need this confirmed either way hopefully the Cardiologist can clear this up today? 😊

Hi Bebe.

I got taken off anticoagulants by the cardiologist cos I had a low score. 6 months later I had a TIA. I’m very happy to take my Apixaban!!

Bebbe
Bebbe
in reply to Drummerswidow

Thank you for your response 😊

Warfarin is a natural anticoagulant. It's made from clover. The big advantage of it is that its effect can be measured using a Coaguchek. Perhaps consider that?

Bebbe
Bebbe
in reply to MarkS

Thanks MarkS I know Warfarins’ roots are natural but it’s been manufactured as a synthetic compound I believe?

Warfarin, the most widely used oral anticoagulant, is a synthetic compound available as a racemic mixture of 50% R-warfarin and 50% S-warfarin.

Thank you for your response 😊

djmnet
djmnet
in reply to MarkS

Warfarin is also used as rat poison (here in the US anyway).

I was eventually diagnosed at 55 with AF, chadsvac of 2 and my mother who suffered from AF had just died from a stroke. I didn't like the idea of life-long medication either but not knowing how long (or short) that life may be without, I took firstly warfarin and now apixaban. Terribly unstable INR on warfarin hence the switch. None of us know how long we have so unless you have reasons not to prolong it, go with the medication. No side effects from apixaban except slightly longer bleeding from cuts (less so than with warfarin I have to say), but cover immediately and don't remove the plaster/dressing for a few hours. Good luck with your choice.

Bebbe
Bebbe
in reply to Cat04

I’m sorry you lost your mum! But Thank you for your response this is really helpful to me 😊

wilsond
wilsond
in reply to Bebbe

I lost my mum to the type of stroke typical of AF..the most devastating and highest mortality rated. She was not anti coagulated. She had a score of 2.

I miss her still every single day 7 years on. Could she still be here if she had been protected ?... I'll never know

My grandma also died of AF stroke.

My choice is Crystal clear?!!

I think of my Rivaroxaban as my insurance policy. Would you leave your house or any other valubles uninsured?

In March last year I had a TIA. At the time my CHADSVASC was 2 but my cardiologist was obviously following the new ESC guidelines which state that if the 2 points are for age and sex only ie no comorbidities anticoagulation is not mandatory. I did not want to take a pharmaceutical anticoagulant. I had tried Pradaxa ( prescribed by GP) and suffered bad indigestion so was relieved when the cardiologist said to come off it. Of course the GP did not naysay the cardiologist. But I decided to take Nattokinase . This is a natural anticoagulant that has been studied in Japan. I still had a TIA. Perhaps I was not taking enough . It was difficult to know how much to take as dosages varied. With the TIA score went up - I now take Apixaban. I don't like taking it but I don't want a stroke!

Bebbe
Bebbe
in reply to Auriculaire

Thanks for your response I have never heard of this natural anticoagulant. I hope your now recovered, I’d have done the same in your situation!

I'm not sure why so many people fear anti coags. I know some people are difficult to titrate, particularly with warfarin, but I have been on it for fifteen years, I have a monthly INR test and frankly have had very few problems in all those years, my INR is constant at between 2.5 and 3. For heavens sake Bebbe if your consultant advises anti coags then go with that advice. The alternatives can be disastrous. Only one word of warning, whilst the effects of warfarin can be reversed in the case of a major bleed (say in an accident) I understand that such is not the case with some of the newer alternatives, but this is something to discuss with your consultant. the only restrictions I have found is that I musn't drink cranberry juice because it's high vitamin K content will reverse the anti coag effect of warfarin.

Rivaroxaban (Xarelto) now has an antidote. I'm sure other board members can affirm if Eliquis and other antocoags have an antidote too.

Hi

Pradaxa is now reversible ( has been for a couple of years now ) which helped me decide to take it. I have no side effects except a bit of indigestion just after taking it. :)

Every person is different and every journey is different, but still, there might be parallels and lessons to be learned from each other. Thirteen years ago I had my first AF episode, just before my 52nd birthday. After my third episode, a couple of months later, I saw a cardiologist who, on account of my age and apparent fitness, advised that no prescription medication was necessary, but that I should take aspirin (75mg daily). I continued to have episodes at the rate of 7-14 per year, each lasting for 4-8 hours, without medical attention until just over 4 years ago, when I was admitted to hospital with an unidentified cardiac event. Bisoprolol 2.5mgs/daily was prescribed, but anticoagulants were advised against meantime, until I was 65 (only another few weeks to go!). The AF episodes have continued since then (October 2015) but I've had no other issues. I'll be taking up the offer of Edoxaban from March.

For much of the time from the beginning, I've taken Omega 3 capsules and garlic pills from the local health food shop: my own anticoagulation solution. I've managed to live an active life - competing for six of those years at a high level in veteran athletics - and have investigated the condition as much as possible in the hope of minimising the impact on my life, and reducing, if I could, the number of episodes suffered.

I started taking magnesium citrate (200-300mgs daily from 2016) and Vitamin D3 (3000 ius daily from 2014). I avoid foods containing high levels of tyramine - a definite trigger in my case - and keep my calcium intake under control - another definite trigger if I overdo it. I try to get a reasonable amount of sleep every day as fatigue also seems to precipitate AF, as do dehydration and stress. I'm reasonably active, walking at least a couple of miles a day, cycling several times a week, I do a few minutes exercise morning and night, a couple of sessions of dumbell based exercises a couple of times a week, I keep my weight under control, don't drink alcohol, and I'm learning, slowly, to avoid over exertion as that also appears to be an aggravating factor. Finally, I try to avoid turning on to my left side in bed until at least halfway through the night. In 2018 I only had 7 episodes and last year I had 9. Bearing in mind that AF normally begets AF, I'm reasonably happy with the fact that my condition doesn't appear to have worsened drastically over the last thirteen years. As per the old adage, "all things in moderation" seems to be the right way to go. I'm still working on that.

So far then, I've not been disadvantaged by the lack of prescription anticoagulants, but, not every one is so lucky. My mother had a long history of AF and following hospitalisation for a lengthy episode in 2015, when she was 78, all of her medication was stopped temporarily - in error I suspect - and during that period she suffered an acute stroke. She survived it and recovered partially, but from then until her death from cancer, her quality of life was badly compromised.

Apologies for going on at length but I felt that a reasonably full picture might provide a more relevant context.

Nattokinase is the one I was thinking of but I couldn’t remember the name.

Some reasonably good info here on it. I certainly rejected as an option when I looked at it - still a VitK inhibitor whereas Apixaban works by preventing clotting at earlier stage and is X Factor inhibitor.

Pradaxa gave many people gastric problems - especially if taken with carbs - the gel coating required acidity so low stomach acid meant the it was difficult to dissolve the capsule - resulting in acid reflux. If any Med is not metabolised adequately it is far more likely to cause affects and not be as efficacious so really important to research how best to take it & it’s not always on the instruction leaflet.

drugs.com/npp/nattokinase.html

Hope that helps your process.

I was in my 40's when I was diagnosed with PAF. I too only had an episode around once every 10 - 12 months for several years and perhaps a slightly shorter gap in more recent times. Always reverted naturally but sometimes it would be 36 hours and it was always horribly violent. I was told not to bother going to the GP when they happened just to rest and wait. I wasn't on anything.

One day a GP rang me and asked why I wasn't on anticoagulants. I explained I didn't get it very often and that I didn't want to be taking medication I didn't need most of the time for the rest of my life. He was insistent. I fought and refused. In the meantime I became hypothyroid so I had to take thyroid hormone replacement (we can't live without that) and then my BP started to go up so I was on a small dose of Amlodopine. One day, out of the blue I discovered that my friend's husband had had a massive stroke. He was tall, slim, fit as a fiddle and very healthy. He was so ill they cut the top of his skull out to let the brain swell outside his body. He lived. I don't know how well he is now because my friend has been too overwhelmed to meet up. He doesn't have the use of his left arm at all. I think he can walk a bit, but he used to walk up Snowdon for a stroll. Whether he can work I don't know. The point of this is that he was the very last person you would expect to have a stroke at 52. I went straight to the GP and agreed the Apixaban. It was less than 6 months later that a bout of AF for me didn't stop. It just kept on and on. It was much less violent and calmed to the point I could ignore it. But I had a cardioversion on Monday and am much relieved to be in better rhythm for now. The side effects I had and still have is from the beta blocker I'm pretty sure. I didn't have any side effects from the time I started the Apixaban until the AF became persistent and I had to start the beta blockers.

The point of this story is that I too tried to avoid the inevitable. I got a wake-up call. In the world of hypothyroidism we see this all the time too. People thinking if they only change their diet to something really restrictive they will recover. If they take some mineral or herbal supplements they will recover. If they use iodine they will recover. If they just want it enough they will recover. They just end up making themselves very much more sick than they needed to be and still have to take the tablets in the end.

I have been taking metropolis (beta-blocker) for twelve years and have had ZERO side effects.

Metropolol.

I think I might need to investigate different beta blockers. I've had a very slow and depressing 11 months leading up to my cardioversion. I was on Digoxin and Bisoprolol. I have been able to stop the Digoxin so far since the procedure and feel a bit better already I think. My legs don't seem to hurt so much. Need to test that by going for a walk and see how far I can get. They also drop my BP too low I think. Cardiologist said there's no such thing as too low BP but I beg to differ!

I avoided taking blood thinners for four years. Researched, took the natural way. Fish oil, aspirin and followed Dr. Sinatra’s protocol for PAF ...

However, l would return to natural sinus rhythm easily and quickly with infrequent episodes. However, my last episode lasted for many hours and l had to have a cardio version. Thereafter my husband as did my cardiologist insist that l begin taking anticoagulates. I chose Eliquis. No side effects and peace of mind.

I feel somewhat relieved and l highly suggest that you do not play around with your life. It’s far too precious. Good luck with whatever you choose to do.

64 replies to your query. That must be a record. What is it 3 against and the rest here are on anticoagulants?

I accept I and the two others are mad but I could return to sanity earlier if a number of the 'For' replies quoted the same reliable stat reference. What would convince me even more is a stroke stat based on a population of 'healthy life' individuals with a past history of AF and excluding those who fully recovered from a mild stroke/TIA. Not much chance of Big Pharma producing that one!

In fact what has got me to discuss ACs again with my cardiologist next week, is the fact that my wife has just had a stroke (fortunately not too bad) and we can't both afford to be at a low operational level.

secondtry
secondtry
in reply to secondtry

Sorry forgot to add my wife didn't have AF and they haven't put her on warfarin/NOACs as a result but just clopidigrel??

Bebbe
Bebbe
in reply to secondtry

👍🏼 take care of each other 😊

I wouldn’t risk it

Hi Bebbe!

I used to think like you and was on anticoagulation for a while, but then discovered this super enzyme, natural, that was supposed to thin ones blood. Started taking it and 9 months later had a mini stroke! Horrible experience, could not speak for a few seconds, was not a nice feeling!!! That convinced me back to Apixaban, that I have not have big problems with it. Understand your concern because you are young, BUT that young age does not help you a-lot after a stroke. I am sure none of us fibbers like to take these meds, but if they let us live close to a normal life, we just have to suck it up. As BobD said you’re playing russian roulette.

I have a cousin who is very overweight. She had a stroke and is now in a very expensive care home. I have a neighbour who used to be a great musician and it was a pleasure to sit outside in the summer and listen to him playing a few sax tunes for practice. The hospital saved his life but the music has died. In Zermatt last year a very overweight man dropped dead as we were walking back to the tour bus. A friend, who is like a beanpole, had a completely random stroke.

I take warfarin and I regard it as stroke insurance. I make very sure I don't miss it .

I wouldn't dream of refusing anti coags. After suffering a stroke at 51. I'm very grateful for the benefits of knowing my Inr consistently

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