This is a companion thread to one started earlier today that may or may not still be available since a link to an article was posted. Earlier thread here:
What seemed to get lost in the original post was a confusion between messenger and the message. The messenger was the Daily Mail, so some dismissed the message outright. But in fact, the story was covered by many credible medical sources, including the BMJ Journal whose headline I used as the subject of this post.
Of course, anticoagulation is extremely important for stroke prevention where indicated. However, the notion that someone with afib is protected by simply by talking anticoagulants is wrong, because of the even greater risk heart failure.
And the unfortunately often repeated phrases here "afib treatment choices is really all about lifestyle" and "afib is not going to kill you" is treating afib in much too cavalier fashion. It's both medically unsound and outdated advice. Yes, strokes can kill, but so can heart failure.
The big takeaway for me is that a fib has to be taken very seriously in terms of both early intervention and best treatment choices.
The good news is that studies also suggest that heart failure may be prevented or even reversed if afib is treated properly .
Jim
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I really don't think we have ever said that anticoagulation is enough Jim. I always preface my comments with something along the lines of "provided rate is well controlled" since that is the area that if left untreated can results in unfavourable outcomes. I do obviously agree and have stated many times that early intervention is important and for me that can unclude ablation. In my view, too many people postpone offered ablation in the hope that something new may come along.
BobD: I always preface my comments with something along the lines of "provided rate is well controlled"
Yes, that is important to include and even more so to emphasize. But there are also studies that suggest that rate control may not be enough for some of us, and that's why many studies now advocate rhythm control over rate control for most where feasible.
Yes, it's important to put people at ease --especially when they have a new afib diagnosis -- but not at the expense of minimizing the potential consequences.
It can be a fine line, but my opinion is that there needs to be more emphasis here on getting proper treatment as soon as possible.
That doesn't necessarily have to be an ablation right away, but definitely more emphasis on getting into and maintaining sinus rhythm for most.
I fully understand that may be easier to do in the US than the UK, because of easier and faster access to ep's, but at least one should try as much as possible.
For whatever reason, here in UK primary care doctors are not permitted to prescribe rhythm control drugs unless so instructed by consultant level. This means that for most people rate control along with antcioagulation where appropropriate WILL be the first treatments.
BobD: For whatever reason, here in UK primary care doctors are not permitted to prescribe rhythm control drugs unless so instructed by consultant level.
It's actually like that in the United States as well, the main difference is that for many of us, getting access to an ep is a lot easier and often we can self refer. The downside is sometimes the treatment recommended may be too aggressive.
Definitely would be nice if the GP's we're a little better trained in all matters afib, including prescribing anti-rhythmics and the testing required to make sure they are being safely prescribed.
That last paragraph is imperative. I had a cardiologist, not ep, prescribe Flecainide to me saying “that’s what an ep would do”. I started taking it and getting other arrhythmias. I called her and she just said to keep taking it and give it time. To me that was totally wrong. I quit taking it, fired her and saw an ep. He put me on pip Flec and it worked like a charm. So even some cardiologists know squat about AFib.
Jim, you hit it! I had AF, after lots of ablations and a cryo-maze my left atrium stiffened and that resulted in heart failure. Maybe self-referral is too easy here in the USA, but I had a lot of professional encouragement.
I never used afib medications, so maybe it not the afib drugs but the non-pharmacological treatments, or perhaps both.
Given the difficulty of getting to see a GP face to face in the UK let alone an EP the bottom line is that afib patients are facing substandard treatments .
Yes . My Dad was in permanent AF for I don’t know how long . It was me that picked it up . His treatment was digoxin and warfarin but he was in heart failure before he died of something else . My Dad died in 2012 of something else . The HF thing seems an obvious result of uncontrolled AF but yes, you don’t hear about it
It might not necessarily be as obvious as it seems. I read a while back a study of HF in which the researchers concluded that it remains to be shown whether individuals whose hearts eventually succumb to it aren't more prone to arrhythmias, rather than the other way round - a kind of 'chicken or egg' situation. So far as I can see, the root causes of both arrhythmia and HF remain yet to be fully understood.
Having a cousin and a friend recently diagnosed with HF, it's something I try hard not to let my mind dwell on.
Thank you for posting Jim - a sensible, factual article designed to inform rather than sensationalise.
My cardiologist's first two actions on diagnosis were 1 - anticoagulation and 2 - rate control which seemed to be the norm for his patients.
The problem for many people who are undiagnosed is that they are not aware that they have an arrhythmia. My husband felt fine but I checked on my Kardia when he was monitoring his blood pressure and he had AF with a heart rate of 68.
I know Bob and others have been involved in raising awareness of AF and we do need to make people aware of the condition and that it can be treated.
Ive been on anticoagulant 6 yrs until recently. Over the last year or eo i have been getting nausea at night . Originaly starting at 5 am . It got earlier until it was waking me at 1.30 am and i saw that i had blood in my stools. The doctors hadnt tweaked to it being the rivaroxaban. Once i had the bleeding i took the bull by the horns and stopped taking the rivaroxaban . The next night i had no nausea . Its a month now and no more side effects . The other side effects were not able to lie on my back without discomfort palpitations and itchy skin. Another doctor put me on Asprin which so far has no side effects but i have been told that for a flutter its almost useless.
How awful for your Alpha - I remember reading on this forum of other having such side effects from Rivaroxaban. Have you discussed using a different anticoagulant? When my cardiologist prescribed Apixaban, he told me that it had the lowest bleed factor of any available at that time.
I believe that Flutter and AF have the same anticoagulation needs.
Yes i have been on pradaxa for a few weeks and that was the same effects. When i first got AF i was put on warfarin but couldnt be stabilised on it. Have to have an INR of 2 i think. Thats when i was put on the rivaroxaban. Never had any problem with it until a year ago and it got worse. Maybe i could be trialed on apixaban but i am loath to try anything else. Im also on a beta blocker which is absolutely aging me. Having been an athlete lifetime and now finding the beta blocker stops my hr to much to be able to excersise. Im not good with drugs.
Thank you Bob and Jim, you have both been instrumental in helping me to navigate my way through my recent diagnosis, and have both provided me with useful information. Especially Jim with helping me to find a great EP in the US. Someone on one of my early posts provided me with a link to the new recommendations in the US for offering ablations as a first line treatment for early cases in people like me. So less than five months after diagnosis and having spoken to two EPs I opted to try to kill the beast in its tracks with an ablation, while my heart is otherwise healthy and strong and before structural damage and the spread of rogue electrics. Today I ran 1 mile nine days after my ablation. By four months I will be completely med free if everything goes according to plan, indeed I was sent home only with Eliquis. I am shocked however at lack of public awareness of this disease, considering how many people it will affect by the end of their lives, there does seem to be a need for more education.
Are you on a beta blocker ? I am and it stops my hr going up adequately so no athletic performance due to getting short breathed. Im in almost permanent AF. I WOULD LIKE TO FIND A BETTER SOLUTION
No, it was contraindicated because I have sinus brachycardia. I took one for a little while but it did affect my cardio! But I have had an ablation now, have you had one? I am sorry you are so symptomatic, I hope you can find something to help.
Ive never been offered the ablation you had . I think it is because my left atrium is so enlarged ,74ml volume apparently from athletic performance long time its not considered workable. I was fetted with a 2 lead pacemaker a couple years ago with the idea of ablating the central av node but after the pm was put i was told av node not necessary. I dont know if i will ever need that but anyway the pm is in and does stop my heart going to slow at night. It is set at 60bpm. Oh well its sort of interesting i guess, bug thats all. No fun this af
Heh Kitenski, thats good news. Im writing this in bed feeling rubbish. I will get up ,have a hot shower then have a go at the gym on the stationary bike.What time of them day do you take the bisoprolol and have you ever had any side effects with it.
I stopped taking the anticoagulation . Do you take any of that as well as the bisop ?
I think maybe doctors don’t like to mention the ‘HF word’ because of the fear it tends to cause. So they prescribe meds to prevent HF without explaining the purpose and some poor people soldier on with symptoms they shouldn’t put up with because they think it won’t hurt them, but as we know uncontrolled or frequent AF will have serious long term consequences. I don’t agree that we say that being anticoagulated is the only thing to worry about, but I also don’t agree with the mantra that treatment is for QOL because it gives the impression that it’s for comfort, not health outcome ie prevention of heart failure.
I think it depends where you live. Here in South Africa doctors are quite happy to use the term 'Heart Failure' as it is what is called a "Prescribed Medical Benefit' i.e. a condition that the Medical Aid Society , if you belong to one, must pay for the treatment of, in full. As long as the practitioner enters the correct ICD 10 code on the account, there is no problem with that. My cardiologist once prescribed me a diuretic and on the prescription, he put an ICD10 code for Heart failure. I immediately 'phoned him and asked according to my last full examination (two months ago,)my heart is fine, how had I suddenly developed HF? - he said you haven't but that was an easy unquestioned code to get it as part of your chronic benefit !
the notion that someone with afib is protected by simply by talking anticoagulants is wrong,
No one has ever, ever stated that on this forum without follow up statement endorsing early intervention and proper medical care. To call out BobD in the other thread is not proper. Statement above should say "protected from stroke" because although not perfect it is the best therapy available.
There is no doubt afib or any heart disease can lead to heart failure/stroke. The following is the conclusion from the JMB journal. It is disappointing that the study does not indicate the actual age heart failure or stroke incurred and compare this with the general population.
If interested just google JMB.
Conclusion Lifetime risk of atrial fibrillation increased over two decades of follow-up. In individuals with atrial fibrillation, about two in five developed heart failure and one in five had a stroke over their remaining lifetime after atrial fibrillation diagnosis, with no or only small improvement over time. Stroke risks and heart failure prevention strategies are needed for people with atrial fibrillation.
I'm not sure that's entirely true. It is stated frequently on here that aside from anticoagulant any and all treatments are for quality of life only.
Yes, that has been frequently said and it's both outdated and wrong. Thanks for being more precise than my paraphrase.
The other often mentioned is that " afib will not kill you". What's left out is the potential for other heart issues, including heart failure. Yes it's nice to be reassuring, especially to do members, but minimizing atrial fibrillation is not in anyone's interest.
I think HF is a fear of many, and certainly me, having a friend and relative relatively recently diagnosed with it. So far as I can find out, doctors have no solid idea of its genesis but it seems modern treatments are far better that once was the case.
I would just like to point out that HF may be a common complication of AF but AF is NOT the most common cause of HF which are:- Coronary heart disease, uncontrolled High BP, cardiomyopathy and congenital heart disease, leaky valves and fraility from old age. Combine any of these with AF or another arrythmia and HF becomes more of a problem.
I have none of the risk factors for HF except AF - which I’ve had for about 20 years and been through the gamut of treatments with no signs of HF. My husband on the other hand was diagnosed with HF some 6 years ago when he went into persistent AF because he had Aortic stenosis, tricuspid leakage and damage to mitral valve from Diptheria as a child, along with very difficult to control hypertension.
Treated AF, controlled hypertension and heart failure improved.
Whilst I agree with the opinion of the DM as a sensationalist comic, on this occasion it seems to me that there is also a political element to this article which people with any and all sort of heart disease should welcome as it is clearly stating that we need more support and resources for AF screening and treatments - so on this occasion - well done DM!
I love your description of the DM as a 'sensationalist comic' - I love it, it provides me with much enjoyed entertainment, especially the comments sections. But then I do like a bit of gossip !!!!!!
I would suggest that you first find out what has caused the HF before you could evaluate whether or not it would be reversible. For my husband reducing the AF burden and controlling hypertension increased EF. You cannot treat until you know cause as sometimes it’s a chick or egg situation. I suggest you look at the NHS website for more information and then talk to your cardiology specialist. Other good sources of info on HF - BHF and I think the AA covers it as well?
Outlook for heart failure
Heart failure is a serious long-term condition that will usually continue to get slowly worse over time.
It can severely limit the activities you're able to do and is often eventually fatal.
But it's very difficult to tell how the condition will progress on an individual basis.
It's very unpredictable. Lots of people remain stable for many years, while in some cases it may get worse quickly.
I had a fall necessitating hip replacement which healed well, then I developed a cough, breathlessness and dizzyness and had many appointments to find the cause, eventually I had yet another chest X-ray which showed my heart to be in perm.a/f and slightly enlarged, sent to a cardio specialist nurse, had an echo cardio and then told in heart failure. Working through my cardiologist, heart drugs were increased, prescribed a diuretic and heart returned to sinus rhythm and I bought a Fitbit to monitor. Told my heart failure was mild and could, in some cases, be reversed. Took about a year of tests to get diagnosed, even though they new I was a heart patient and fitted with a pacemaker some 8 years plus now, but feeling quite well at the moment having just celebrated my 80th birthday, so still here!!!!
thanks for bringing that to our attention Jim. I'm not sure how one gets HF i assume the heart gets knocked around and atria dilates and heart gets larger if in AF and its not controlled. I'm using the drug approach atm both low dose Metoprolol and Flecanide low dose and seem to be having no issues...knock on wood!
Hello there, so many people including my gp, say 'don't worry af won 't kill you, loads of people have it and don't even know.' However by the time you get to see an ep and properly investigated, the left atrium is too dilated to do an ablation, and you are stuck with hf. A sad state of affairs. Best regards
Is this what happened to you? Because if so, that is a sad state of affairs but sadly not unusual. And that is what worries me about this type of information - it will cause worry and distress to the many who are unable to access competent and experienced specialists - too many patients and too few specialists and resources.
I just asked my cardiologist this question the other day: how big are the chances that I would get heart failure from my paroxysmal Afib? The answer was: 99,9 % NOT! The trick is to exercise daily and as vigorously as possible, control blood pressure and weight, eat healthy, don’t drink or smoke, take the appropriate medication and ..: avoid stress.
The trick (to preventing HF) is to exercise daily and as vigorously as possible, control blood pressure and weight, eat healthy, don’t drink or smoke, take the appropriate medication and ..: avoid stress.
While the things you mention can often help, there are many who do all of the above and still end up with heart failure and often because their afib was not well controlled. You mention you're in "paroxysmal" afib, however, overtime that can often progress to persistent and permanent without proper treatment.
My dear late mother had paroxysmal Afib for over 30 years, which never developed into persistant, let alone permanent.
She lived to be 93 with the condition, and died from a digestion system problem. During her last checkup, in my presence, her cardiologist said: ‘you have the heart of a much younger person’. No heart failure whatsoever.
The same goes for me. I had a massive heart attack 6 years ago, after which I developed paroxysmal Afib. That is now under control most of the time with Flecainide and Bisoprolol, but I do have regular breakthroughs. I then take an extra dose of 200 mg. Flecainide.
During my last checkup my cardiologist said ‘there is almost no remodeling of your heart muscle, which is still surprisingly supple’.
So, in both our cases, the chances of Afib deteriorating to persistant or permanent are very slim, and the possibility of developing into heart failure is practically zero.
I repeat the trick: exercise, healthy food, no smoking or excessive alcohol consumption, the correct medication to restore sinus rhythm as much as possible and a positive attitude!
But, of course everyone is different, so it might very well be that some people will eventually end up with heart failure. In any case, following my advise, they will be able to postpone that too.
Very happy things worked out so well for both you and your mother.
But once again you mention paroxysmal afib, where there is going to be less chance of progression to heart failure. We are all not that lucky, no matter how much we optimize the lifestyle tricks you note.
As to vigorous exercise, again I'm glad that worked well for you, but for many of us, moderate exercise cannot only work just as well, but perhaps better. Is my case, vigorous exercise was an a fib trigger and I am not alone here.
It all depends on the type of Afib that one has. Vagally mediated Afib will almost never be triggered by exercise, adrenergic Afib will be.
Not that simple. In some individuals, the triggers for AFib may involve a combination of factors related to both the vagal and adrenergic nervous systems.. I am one such individual and there are many, possibly even a maturity of us.
Same with prescribing medication's. Since my afib is triggered by vigorous exercise, by your formula, Flecainide should not work. Actually, it was a wonder drug for me.
Again very happy you found a formula that works for you, but lifestyle modifications , which should be tried , do not always work for many of us.
I agree but excersising vigourasly has become difficult for me because it seems the beta blockeri am on prevents my hr from increasing to a satifactory level
Same here, 2,5 mg of Bisoprolol slows down my resting heart rate to low 50-ies, and I have to exercise real hard to get it over 115, but then I just exercise more often and longer. And I add a few 90C- sauna’s every week, which will also push my heart rate up. According to my cardiologist that should do the trick
I agree but excersising vigourasly has become difficult for me
Just because one poster says to exercise vigorously doesn't mean you should. It may work for them, but moderate exercise can work equally well for others and in fact is mostly recommended over vigorous exercise.
Excersising in Z2 which for me is about 95 bpm is fat burning level and if you dont have a monitor then excercise up to when you can just still talk. That level is not high enough to get up the hills around here on my bike hence my shortness of breath. They arent huge hills!!
Have you thought about an electric bike? You can get as much or as little exercise as you want and keep your heart rate down even on the big hills. You don't even have to buy a new bike with a mid drive kit from Bafanng.
Yes, there are a lot of front and rear hub electric bicycle out there.
I prefer the mid drive kit because you can basically use whatever bike you're riding now.
Google "Bafang Mid Drive Kit" and you'll see the one I went with. I find the 750 W model, more than enough, but they do make 1000 W which could be overkill, or could be quite thrilling!!! The nice thing with the mid drives is that you can pedal as much or as little as you want. You even got a throttle only setting which could get you home without any peddling, which can come in handy if you're exhausted or just not feeling well.
If you want spend more, they are a bunch of dedicated e-Bikes to choose from.
Again, you can spend as much as a little energy as you want, and if you're riding as a group, you never have to worry about holding the group back.
Very interesting. I have Afib, rhythm not rate and I think I've had it for years before being diagnosed after a stroke. I was also diagnosed with Heart Failure (a term many of us hate and would prefer Impaired Heart Function) I have also been diagnosed with DCM so not suitable for ablation or cardioversion ( had one, ( failed before I left the hospital) I know my heart is still out of rhythm so for me it's QoL.
This always worries me. On my mother’s death certificate was heart failure and secondary cause atrial fibrillation. One causes the other so don’t know which way round it was. I have a structurally sound heart with lone paf . Cannot take control drugs owing to very low heart rate and flecanide was changing the T waves in the heart. My EP discharged me saying there was some risk with ablation and he thought I was better just leaving it as my symptoms are not onerous. He thought the attacks would increase but my heart would stand it. Only now the attacks are every 10 days
Have you thought about getting another opinion from another EP? If you have a structurally sound heart, did he say what the risks were, or were they the risks that are normally associated with an ablation?
If your episodes are now more frequent, it might be worth just getting another opinion, but of course, it’s up to you.
thank you for the post. Earlier standard advice to GPs was it “is a common chronic condition treated in primary care” usually with rate control. My otherwise excellent GP said this to me 8 years ago on first episodes and after a four year AF free gap, repeated the mantra. I insisted on referral, she said it would be “months or year” (mid Covid) I got a call four weeks later and offered almost immediate ablation. Team I was referred to consider AF a priority to treat. And I was told that I - like many - had a rhythm issue and a rate control med contra indicated…
Since having to go on a waiting list for a mitral valve repair surgery, I've been saying that the "AF won't kill you" may be correct but the problems it causes, may well do.As I had no valve issues prior to the AF, they think that it is the AF, and the following atrium enlargement, which has caused the problem.
So yes, very important for medics to monitor patients regularly and act promptly when there is an issue.
I'm in a very similar situation to you. Been waiting for open heart surgery to replace mitral valve damaged by being in persistent AF since Oct 2022. Last month the cardio-thoracic surgeon said he was reluctant to do the surgery as there was a very real possibility that after 5 or so hours on a bypass machine and a couple of days in a medically induced coma on a ventilator in ITU, he would not be able to bring me around. So now I'm waiting for a catheter procedure called TEER a transcatheter edge to edge repair of the mitral valve. This being quicker than open heart surgery and requires less time on bypass or ventilator.Serious exercise, running a mile, working out at the gym? Some of us have such severe heart failure that we're so restricted that it is a major endeavour to just climb the stairs, and lifting weights? My surgeon would prefer me to lift a tea cup rather than a coffee mug!
Eeeek! I'm scared witless about the surgery as it is but I'd probably panic even more if my surgeon said he didn't think I'd survive the op. 😳.I technically went on the list 2 years ago but then got put to the side as my health improved dramatically after a successful cardioversion 2 years ago, so they referred me for a scan to check if the valve had improved. Having then waited 4 months for the scan, they decided I still need the valve repair so back on the list 12 months ago, and still waiting.
I asked 2 years ago about the less invasive surgery but my hospital weren't doing that at the time and my surgeon said he preferred to see what was in front of him rather than on a screen.
I know they do the TEER at my hospital now. I know they only offer it to folk who probably wouldn't stand OHS but I can't find a reason/explanation as to whether they dont do it for everyone. Is OHS a higher success rate and if so, why?
I'm chasing the surgeon's secretary currently so it's a question I'll be asking.
This is important. I have read on these boards that any and all treatment for Afib is for quality of life. Whilst I think this is meant to convey that there's no cure for Afib, it overlooks the importance of effective treatments in slowing progression of Afib and consequently preventing or slowing the development of other associated morbidities such as heart failure. Being in sinus rhythm is better for your heart than being in afib therefore any treatment that reduces the amount of time an individual spends in Afib has a positive impact on their health and wellbeing as well as contributing to quality of life.
Its almost heaven when one gets back into sinus rythm. Trouble is i dont stay there long. One big ectopic beat and sway it goes again. Its such a difficult balance
I am in the North East of England and my local Doctors have no idea of AFib, take no interest and just prescribe the pills. So I work on the basis if I wake up each morning I am good to go.
Look I was having the same - zero interest from GP - luckily they prescribed Apixaban but also Bisoprolol which turned me into a complete zombie - actually told me what do I want them to do and that I was being treated properly and nothing else could be done - no options! Made a private appointment with a cardiologist (£250) and onto a waiting list for ablation with NHS - took a while (9 months) and had ablation in Dec last year - been 3 months now with no AFib so fingers crossed it stays that way - There are options and ways to get proper treatment - please don’t accept less!!
I think many of us did similar, I certainly did after 5 years of messing with local hospital and seeing cardiologists with little interest in arrythmias and out of date info. Thankfully I found this forum, went to AFA Patient Day and was blown away by all the access to experts with latest info.
Now it’s all available online so you don’t even need to travel.
HOWEVER, there remains a majority who are not able to speak out against docs ill informed advice & aren’t cogniscent of latest information or just cannot afford a private consult. 😢
I know and that’s exactly why I feel so angry when I hear peoples stories - its just inexcusable - I know I’m lucky - I was born a battler and was able to pay for a private consultation which tbh I was shocked was only £250 - I’ve paid more for a bloody car service. I know lots of people who would have taken GP’s advice and done nothing more and carried on suffering in silence. It’s just not good enough in 2024 and in a country such as UK. Unfortunately it’s also not limited to AFib
I have elderly patients (I'm in foot health) who are very accepting of what their GP tells them and almost revere them. I've had to encourage a few of them to ask for follow up appointments.
As I got Stroke and AF was present Rapid and Persistent - I had AF prior.
I am struggling with the Papillary Thyroid Cancer which caused the scenario.
My 4th Ultra-sound Neck Scan has showed up abnormalities.
I was lined up to have an RAIodine Scan some 400kms away. But the prep was scary as no thyroxine and on a Low Iodine Diet without a thyroid will grow my TSH towards 30.
Usually I am TSH1.7.
Two days into my new regime tested already showed TSH is 2.9. TSH 1.2 up already.
Because I asked for support owing to my AF and former Stroke, the surgeon has rethought and now I am going to Whangarei - 150kms x 2 return 300 total. Still using RA but a tracer which will show up any cancer throughout my body. Cost $3560 but I'm public.
After that it will be biopsy and surgery.
We need to remind a Thyroid team that my heart must be considered as well. TSH hypo means I will have a higher heart rate for which I take Diltiazem 120mg. ? will it cover a higher Heart Rate.
Seems a long way around.. will I make JAPAN in October???
Yes anti-co.agulant is important. My friend went out of the area and had run out of her 110 mg PRADAXA twice daily by several days AND ENDED UP WITH A MILD STROKE.
It did jolt me into 'not being forgetful about keeping to a routine'.
yes I get what you mean as the cocktail of tablets my husband is on the doc said is to protect and improve his heart function after his stroke . They want to improve his function before the next eco where his function was 33% last august .
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Sanjay Gupta and anticoagulants
Dx'd with AFib but not able to take anticoagulants
A little disheartened!
