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Who’s not on Blood thinners and In and out of AF ?

mjm1971 profile image
30 Replies

Anyone on here not in permanent AF, under 60 and not on blood thinners ?

I’m 50 I go in an out of AFIB about 3 times a week I have no other co morbidities so I score zero re stroke risk .

But it drives me nuts the thought of it every time I come out of AFIB ?

So just wondering if anyone else was in a similar boat and is it just time that gets your head round it ?

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mjm1971
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30 Replies
rosyG profile image
rosyG

tricky position- be guided by cardiologist re stroke risk - chads vasc score- I once asked one of our speakers support group AF) why young people are not at risk for stroke in AF and he said because the heart lining is still smooth so the slower blood flow doesn't pool and catch on the surface and clot. Do talk to you doctor about your fears

Hi mjm, just to clarify, are you saying you would prefer to take an anticoagulant even though you score zero on the CHADs2VASC score or that you don’t understand the concept of the scoring system?

mjm1971 profile image
mjm1971 in reply to

Hi Flapjack

I guess it’s both . As I’m new to AFIb I panic when I go into AFIB and then I’m even worse when I come out through fear of a stroke .

I’ve had the Chads scores done and been told by 2 gp’s and 2 cardiologists that my risk is negligible

I’ve gone from a standard stiff upper lip British male to a shadow in 2 weeks

So was just wondering if anyone else was in same boat in regards to age , chads score , no blood thinner and going in and out of AFIB etc .

Is there any other tests that can be done to check for clots or likelihood?

Or do I just go on thinners and take that risk

I guess it’s my option and my own sanity that has to decide ? Which is also a tough choice to make .

Who invented this AFIB lol I want a word with them …….

in reply tomjm1971

You would have to join a very long queue, with 1.3 million folk in the UK alone, most of us feel the same way! Your question is a difficult one and I’m certainly not qualified to offer advice as to what you should do. So many who are prescribed anticoagulants are worried because they fear a spontaneous and uncontrollable bleed. Others find it difficult to understand why age and other health factors can all of a sudden put you at a higher risk of stroke. All I can say is that we are told the risk of stroke for most people is significantly higher than the risk of bleeding once you score 1 or more on the CHADs2VASC score. I suggest you share your concerns with your doctors but you are likely to experience some resistance to have them prescribed whilst your score is zero.......good luck

Letofeyd profile image
Letofeyd in reply tomjm1971

Hi.I find it confusing, too.

I was in Emergency last week with a heavy AF that would not respond to cardioversion.

Despite telling me I had a score of ZERO, they subsequently still put me on anticoagulant (Apixaban).

The scoring seems to be just a guide that is only part of the bigger picture on anticoagulants.

I am relieved, in a way because, like you, stroke was my biggest fear.

I wish you well with your AF and hope you can get past the frequency and anxiety.

rubble4356 profile image
rubble4356

Hi , I’ve been on blood thinners and bisoprolol for 1 and half years ,after my gp said you should be on them with AF, although I’ve had 2 ablations 7 and8 yrs ago with no tablets until recently . I am 59 and have several episodes of AF a day but lasting only a few seconds ; I have had a few long episodes over the years , but only this week GP has taken me off Blood thinner saying that my Chad score was zero ,! I explained the stroke risk but he explained the risk taking blood thinners , although you can’t reverse a stroke ! So what do the general public think !

PlanetaryKim profile image
PlanetaryKim

I had lived with intermittent afib since 2015, having an episode every 2-3 weeks in last year or 2. I have not taken blood thinners or any other medication for it at any time. I am 66 & female, but with no cardiovascular comorbities. European Society of Cardiology guidelines would support this choice, or at least not oppose it. Canadian cardiologists do not support such a choice. But I have done the reading, and the thinking. So that is the choice I made. The whole issue became moot earlier this year when I began doing an ivermectin prophylaxis protocol for something else... and my Afib stopped. Have not had an Afib episode since Feb 7-9. I posted about it here: healthunlocked.com/afassoci...

RajaRua profile image
RajaRua in reply toPlanetaryKim

Really interesting Kim. Would be so good if we had more AFibbers get this Ivermectin to see if it has the same effect. I'd be first in the que. Being a cat and dog lover and kisser! God knows what I've picked up over the years! (I'm serious!)And I'm really happy for you and I love the job you did on the path BTW. Long may your great energy and well being last!

PlanetaryKim profile image
PlanetaryKim in reply toRajaRua

Thank you very much. If anybody tries this people should be aware ivermectin does have some anti-coagulant properties (via Vitamin K pathway). I have not noticed it myself in my prophylaxis usage (1 dose every 2 weeks). But I saw a paper that suggested warfarin should be temporarily reduced or INR closely monitored if patient also being treated with ivermectin.

cuore profile image
cuore in reply toPlanetaryKim

Where do you get this invermectin? Does it have to be prescribed by an EP? Did you take it when you were in AF, and did it stop the episode?

PlanetaryKim profile image
PlanetaryKim in reply tocuore

Ivermectin is a prescription drug, normally prescribed in humans for scabies, headlice, or intestinal parasite/worms. Those are its labeled/approved uses. But it is also a potent anti-viral and anti-inflammatory. Some research even says anti-cancer/anti-tumor! It is also used on animals - livestock and pets. And many people are actually now using the animal versions of it because it is the same and easier/cheaper to get. Depending on where you are, it can be quite difficult to get a prescription for ivermectin right now. And in Canada right now it's almost impossible to fill a prescription because all pharmacies are back-ordered for many months with no end in sight. But there are other ways to get it. I know of several ways.

I did not take it when I was having an afib episode. I took it for another purpose (covid prophylaxis), which involves one dose every 2 weeks. And I was not in afib when i started dosing it in February. And I have never had afib since. And prior to that I had an afib episode every 2-3 weeks.

So it could just be coincidence. But I suspect the anti-inflammatory aspect made the difference. However it is apparently also effective against H. pylori. And apparently from some reading I have done, there may be a relationship between H. pylori (bacteria that causes stomach ulcers) and afib. I don't know that I ever had H. pylori. But if I did, the ivermectin could have cleared it.

It's all speculation, but I do think the ivermectin is in some way is connected to the disappearance of my afib earlier this year.

Letofeyd profile image
Letofeyd in reply toPlanetaryKim

I am in Canada, too. I am intrigued by this.

PlanetaryKim profile image
PlanetaryKim in reply toLetofeyd

Feel free to message me if you want more info. I can certainly share how and where I am obtaining mine. I have used 3 different methods, all legal.

RajaRua profile image
RajaRua in reply toPlanetaryKim

Thanks for that Kim.

Kittyca profile image
Kittyca

I was diagnosed with Afib at 43, no anticoagulants until 60. But every time a had an episode I was admitted to hospital for chemical cardioversion with amiodorone. Usually it took about 18-20 hours to return to NSR. At hospitals I usually had 2 injections a day of clexane (witch helps to prevent clots). Doctors said that my score was 1(female). But I always was extremely worried about clots. Though from 55 they started recommending rivaraxiban but I took my risks and only started at 60(at that stage I was advised that my score was between 1-2). Between 43-55 I didn’t pay much attention to Afib and the main thing why is the fact that I had nearly no information. Looking back now I should have been worried more.

12 years ago, I was mid 50's and going in and out of AFIB about 3 times a week. I did nearly 12 cardioversions .... but moved onto Flecainide as pill-in-pocket to bring me out of AFIB, which worked pretty good.

However, I tried everything: lifestyle changes, supplements, etc. but nothing would stop the aggressive AFIB. I didn't take blood thinners for quite a while.

But it got worse ... so they put me on warfarin, which I really didn't like. No salads and weekly testing.

That's when I got tired of all of it and scheduled an ablation. First one failed at 9 months. Immediately scheduled another. It gave me 10 years of peace, normalcy, and no meds.

Get THE AFIB CURE book by EP John Day. It will answer most your questions and which path to take going forward. Good Luck!

secondtry profile image
secondtry

You don't say how long your episodes are but if I was you and they were less than 12hrs on average I wouldn't worry about a stroke so much. I am 67 and at my last recent annual cardiologist review, he said I should consider starting ACs if my very infrequent AF episodes lasted over 12 hrs. I would be focussed instead on Lifestyle changes to reduce and preferably stop the episodes, many are mentioned here e.g. reduce gluten, stress, over exercise, alcohol, processed food, red meat & many more. Life can return to near normal.

Wightbaby profile image
Wightbaby

read my reply to kalgs.......his post titled Apixaban

CDreamer profile image
CDreamer

I wonder if it is causing you so much concern if you could talk to your GP and say that you are very anxious about this and it’s causing you distress and talk about it?

I wonder if you could also do a thought experiment? Imagine yourself taking anticoagulant and the knowing that you have some protection. Then imagine you have AF - the AF finishes - do you feel less anxious, same level of anxiety?

I have heard some EP’s say that there would be a case for anyone with AF to take anticoagulants.

I didn’t take them regularly until I was 65 so that was about 9 years with regular AF.

Jetcat profile image
Jetcat

Hi mjm, I’m now 53 and was diagnosed with lone afib around 8 years ago. I was on warfarin leading up to my 3 PVI ablations but only because of the surgery.! 4 months after my third ablation my EP took me off the warfarin because he said my chads score is zero and my afib episodes were a lot less now. I too mentioned the stroke risks etc and told him that I had no problem with staying on the warfarin but he still said I did not need it.!!!! So I just thought who am I to argue with a specialist EP ?.

Auriculaire profile image
Auriculaire

Have you considered taking nattokinase ?This is a natural anticoagulant that has been studied in Japan. It is derived from natto a foodstuff that the Japanese have eaten as part of their traditional diet . Up until recently when their diet has become more westernised the Japanese have had a very low level of ischaemic stroke. If you cannot get your doctors to prescribe an anticoagulant it might give you some peace of mind. There are some posts here from people who take it. I took it for about a year but had a mild TIA putting my CHADSVASC up to 3 so doc prescribed Apixaban.

Rw12 profile image
Rw12

When I was diagnosed in my early 40s the doctor recommended no blood thinners as my afib episodes were always very short (minutes to a few hours) and I never needed cardioversion. I also had a zero chadsv score. I had ablation in November which worked amazingly (knock on wood) and now take no meds.

mjm1971 profile image
mjm1971 in reply toRw12

Hi RW12

How long did you wait for the ablation ? I've heard this in part time AF have a better success rate so I'm praying I get mine in time before i go fulltime AF

Rw12 profile image
Rw12 in reply tomjm1971

It was close to 3 years from diagnosis to surgery. I tried a lot of other remedies, but nothing worked long term and I felt the number of episodes was increasing. Once I decided to go with surgery I was booked for the next month, but I’m in the US. I highly recommend surgery if you’re a candidate as it has improved my quality of life enormously.

mjm1971 profile image
mjm1971 in reply toRw12

Thanks , im in UK so no chance of that happening that quickly for me , fingers crossed you remain AFIB free ............

drjohnday.com/do-i-have-to-...

Chrissy7 profile image
Chrissy7

Hi I’m 57 and was in and out of afib for months- now on atenolol 25 mg which seems to be controlling it well.I went through this on this forum with many people who thought I should be on anticoagulants but I have only been on baby aspirin and honestly some days I forget to take them.

The difference for me is I recently figured out I’m having PVCs SVTs and other bothersome things that also are begins controlled now by atenolol so I’m glad but waiting to see EP and possibly will have alblation if I’m a candidate.

At first my GP thought I should be on a blood thinner then he spoke to my cardiologist and they agreed that I didn’t need a blood thinner because my CHAD score is 1.

I’m honestly not afraid because I don’t feel I’m at risk for stroke and I really don’t need to juggle another medication which can have side effects and I am so sensitive to the side effects.

It sounds like you are in good physical condition I don’t have a risk for stroke – I will take comfort in knowing that.

AussieHeart profile image
AussieHeart

I am 58 and newly dx. It took a year despite having mitral valve stenosis which can lead to aFIB. I had to faint twice for my cardiologist/GP on the recommendation of the neurologist see an EP! He inserted a loop monitor which showed ectopic beats/intermittent aFIB. He says no need for anticoagulants as my heart in his words is“healthy and strong”! I asked was it necessary then to even be on a beta blocker and he replied “Yes, don’t want your aFIB to worsen.” I tell ya how do you follow these people? My GP is confused as to why I wasn’t put on anticoagulants in the get-go. I’m hoping the EP’s report to the GP sheds more light. I got 15mins with the specialist and didn’t get half my questions answered. The moral of this story is: ask why as much as you can!

Maril1 profile image
Maril1

Diagnosed with aflutter in 2006 on warfarin. Cured through an ablation in 2008 but still get afib up to 8 hours a few times a week was on baby aspirin for a couple of years but no med at all since. Hope to get back to docs once this pandemics over to see if I should be on thinners

beach_bum profile image
beach_bum

Although over 60..66, I can out run, ride, hike most average 40 year-olds...definitely..so sayeth my Dr. ...zero other cardio or health issues other than my recent PAF, which seems to be under control with channel blockers *180mg daily of Diltiazem. I also was prescribed a daily 20mg blood thinner..Xarelto, and no side effects of restrictions with either. I also asked about the blood thinners, and my Cardio said "you could be in afib and not be aware of it" and my reply was "but I wear an apple watch with sinus/afib alert" and he said "do wear it to bed, and would it wake you up if you went into *mild* afib?" Me..."um...no"....him..."then I highly recommend the thinners" If it makes you feel any better, I tore up my right calf mountain biking last month, and the profuse bleeding from multiple abrasions and cuts stopped in an acceptable amount of time. I would not have thought "oh that is bleeding more or longer than usual"....and sadly, I have lost a lot of blood in pursuit of "fun" over the decades lol. Having said that, apparently Warfarin has loads of bleeding cautions.

Many many people with afib have other, some multiple medical issues, hence the med warnings and cautions.

Consult the professionals

🙂

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