Opinions please

I just read Dr John Days newsletter that he put out today. There was a study done in Australia on AFib sufferers to see if weight reduction can put patients into AFib remission. Very interesting finding basically found that 45% of patients with PAF with no other health issues were able to remain symptom free and medication free with a weight reduction of at least 10% for a three year period of study. The study also pointed out that success rates were less with a 5% weight increases during this study period. In other words, you run a risk of regaining symptoms if you put on any weight. I found this interesting but I'm unclear if any patients had ablations previous to study.

I've been on a weight loss program and have lost 15 lbs. I'm not obese but could stand losing some weight. I have also taken out all processed food and wheat products from my diet. I also eat very little dairy but do eat meat and fish. I haven't had an episode since April and am nervous about the decision I made to have a Cryoablation next week. I have PAF so not sure if this could mean I'm in remission or am I being too optimistic? Any opinions please as I'm very unclear with my decision, Gracey

52 Replies

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  • It's a hard one only you can decide this thing has a mind of its own

  • Thank you Mazza, struggling with this! Gracey

  • I hadn't had a bout of AF for six weeks and I was sure my heart felt better it took a lot of effort to go through with the ablation look back at your history see if you have had periods of no AF before that's what I did and made the decision to have it done xx

  • Yes, my episodes seem to run in bundles. I can feel very strong and then boom and my whole personality changes. I begin feeling vulnerable and sickly and I don't like the feeling. I want the fear and anxiety to go away a bf become who I was before these episodes and toxic medication. For sure I feel lousey while having an episode by mainly they leave me feeling weak and old. I'm 66 years old and want to live a long life as healthy as possible. The ablation seems the answer for me but after reading so many stories on this forum will I ever get rid of the fear? Thank you for all your help, I have one more week to be sure of my decision, Gracey

  • Hi Gracey,

    I was diagnosed by a member of the A & E team at East Surrey Hospital in UK as having pAF. The Consultant Cardiologist at East Surrey (and not an EP) discussed all my treatment options which included an Ablation and what was involved. I declined. I do remember my words, and I think he probably does too ...........Jeeez, I'm not having anyone barbequing my heart ! unless it is an absolute, positively last resort. Thanks but no thanks.

    By the 4 to 6th month after diagnosis I identified food as a trigger for my AF.

    Long story short - following several consultations with a Nutritonist I went on a diet - not to loose weight ( although I did loose some) but that wasn't the purpose of the diet.

    The purpose was to calm my vagal nerve by eliminating foods that aggravated it. The vagal nerve being a nerve in the central nervous system which controls both digestive system and the heart. So from around July 2010 I've been dieting - no wheat products, no gluten, no processed foods (well very little anyway) and I've progressively eliminated a range of other foods .... indeed it is still very much a work in progress every now and then I inadvertently eat something that stirs up my digestive system and brings about massive bloating and I feel pressure around the heart area in my chest.

    OK - well the result of all this is that my last known and recorded AF event was April 2015. I hold a PCV licence for driving buses and since I'm over 65 I have to have a medical each year and each year so far it has been renewed by DVLA. My GP has written on the medical form - no further intervention needed for AF and with that is the declaration of my current medication.

    I don't regard myself as cured of AF, I don't trust the mongrel thing at all and I'm under no illusions about it .... but for now at least I have my quality of life, I still socialise, drink alcohol, travel and work (30 to 40 hours a week) driving buses and generally have a ball, although I do pace myself a bit more than I used to.

    Gracey this is my story, of me, about me, for me and by me. Not for everyone BUT it was for me. Can't say if it would work for you I'm afraid.

    Good luck with your decision making.

    John

  • John thank you so much for sharing your story with me. It is such a personal decision and so hard because Dr doesn't say that it's totally necessary but for QOL. Are you on an anti coagulant? Gracey

  • Yes Gracey, I am. My medication party bag is exactly the same as it was when I was put on it at diagnosis in Jan 2010 (7 years in January 2017). I was already on Ramipril for high blood pressure and Simvastatin for cholesterol before AF hit. At the time I was diagnosed I was put on 5 mg Bisoprolol ( rate control) and Warfarin (average dose 5.3 mg a day, taken at night). I was kept on the other two and am still on them although my present GP has added Felodopine.

    I have no problems with Warfarin at all. I have my own Coaguchek XS INR self testing device and occasionally I tweak my own doses if INR becomes unstable but generally it doesn't. These doses have never changed over the years.

    I would add that twice I've had to come off Warfarin, once for a CT scan and once for major surgery - a partial knee replacement - no problems. With the knee job I have to admit they gave me a bridging anticoagulant once back in my room in recovery. Job done.

    One of the factors that made me reject an ablation was that when I was diagnosed with pAF it was only 9 hours after onset and I figured that such a procedure was a knee jerk reaction. I was also put off with part of the explanation given to me that there is no guarantee that it will be either a quick fix or a permanent one and that many ablatees have to have serial proceedures before any fix is forthcoming - and finally for some, in rare cases it just doesn't work and there is an upper limit as to how many ablations can be done.

    John

  • Hi John,

    Does the coagucheck measure how thick or thin your blood is? I am new to a fib and haven't yet been given a Warfarin or those types of medicine yet. I do take the supplements turmeric and also olive leaf extract. Both help me manage my type 2 diabetes with no meds. They are also both anticoagulant in nature. I wondered if your device would let me know if they are working enough to avoid Warfarin.

  • The actual consistency or runniness of your blood will be the same if you are on any of the anticoagulants (warfarin or one of the NOACs) as it is today before going on them. The runniness fo blood does vary from person to person and also slightly if you are dehydrated or well hydrated.

    All the anticoagulants do is to make it slightly slower for the blood to clot hence reduce the chances considerably of clots forming in the heart and in the circulatory system and travelling to the brain and causing a stroke. Yes it will clot slower if you cut yourself but it won't run any faster!!!

    It is extremely unfortunate that anyone ever did call them blood thinners and that so many of the medics (including consultants and doctors) use the term. I have even had arguments with nurses who believe that it is runnier!!!

  • Hi fredsbarn,

    The Coagucheck XS device is designed to produce an INR reading from blood of a patient on Warfarin, and Warfarin only - from no other anticoagulant. Yes, in very basic terms it measures the thickness or thinness of the blood. Each patient - depending on the specific heart condition they have will be given a target INR range, mine is 2.0 to 3.0, they will also be given a specific target INR reading, mine is 2.5. Other patients may be given a higher range and target. It only performs this function and no other. It will not tell you if other medication is working well enough to avoid Warfarin.

    With this device a reading of 1.0 is normal blood, a reading of 2.0 will put you on the threshold of the range and the minimum that ensures you are anticoagulated, a reading of 3.0 is the max. and anything above that, especially if it exceeds 5.0 will mean you become at risk of a major bleed. Generally speaking, a reading of 1.5 or as high as 5.0 will not be a problem in an isolated cases, but will still be enough for your dose (calculated by computer according to a set of medical algorithms) to be adjusted by the INR Clinic ever so slightly. I seldom hit my target of 2.5 but I am always in range between the INR readings of 2.4 and 2.8. This computer calculation will also provide the next test date. The more stable your INR readings the more likely you are to get a long test date (I'm currently at 70 days between tests) but I don't let it go longer than 2 to 3 weeks because I am never sure PRECISELY of the influence of what I've eaten (or drunk).

    If you 'Google' Coagucheck XS by Roche you'll get shedloads more information than I can put on this post. You would also be advised to 'Google' something like ..... Food interactions with Warfarin or Diet interactions with Warfarin.

    For me this gives me peace of mind and enables me to comfortably live a normal life without being tied down to INR Clinic appointments - I take it all the time when I travel - even on trips to Australia.

    John

  • In fact the base range for a person is not on an anticoagulant is 1.0 to 1.3.

  • Hi John can I ask are you on any medication?

  • Please ignore just read down the posts :)

  • But do you still take medications or have you stopped these ?

  • Yes, I am taking all the meds and I am on them for life.

  • Why? Particularly blood thinners! If you have no afib symptoms then there is no danger of blood 'pooling' in the atrium and causing a clot.

  • Many specialists believe that the risk remains if you have ever had AF. Sorry but the condition can change the internal structure of the atrium which may promote clotting. Even successful ablation (like me) does not remove that risk hence many of us choose to stay on anticoagulants for life. Small price to pay for peace of mind.

  • Three scenarios. (1) before being diagnosed with AF; (2) after being diagnosed with AF and (3) after having an ablation and in NSR.

    (1) The reason we in the UK have such a high incidence of strokes is because AF is not picked up, particularly if someone is asymptomatic or very mildly symptomatic, and over 60% of all major and fatal strokes are caused by AF. We are almost at the bottom of the league in Europe on this one and behind a number of countries that were part of the Russian federation. The risk of someone with AF is 5 times a normal person.

    (2) Once diagnosed with AF the "Gold" start approach is to put someone on anticoagulation straight away (this is what my GP did) because apart from checking for AF and Blood Pressure which are very quick other tests take longer to arrange and many people with AF have other underlying conditions which increase the risks. You can always stop taking an anticoagulant later. As has been said better safe than sorry!!! See (2A) as well.

    (2A) This applies to both (2) and (3). One thing that has come much more to the fore in the last few years is the number of people with paroxysmal AF who have AF attacks that they are aware of because they are symptomatic but they also have attacks that are asymptomatic or mildly symptomatic. This can obviously occur in their sleep but also in the daytime. There are quite a number of people on this forum who have had Holter Monitors that have picked up additional attacks and these can be many times the number that the patient knew about!!!

    (3) See (2A) as well. See BobD's reply. I haven't seen a formal study but some EPs have said that it could be two to three times. The key here is the info in (2A). Could it be that the person's heart/body has become a bit acclimatised to AF or is the person less aware of minor blips - who knows and I am not medically qualified. In just the same way that many people started off with asymptomatic AF once they had an ablation and been in NSR for a period if it starts again then quite possibly they start off as asymptomatic once again.

    Technology will help in the long rum for sure but I suspect that it will take 15 years plus to get some meaningful data and need loads of volunteers and planting a recorder in people pre-AF.

  • When I was diagnosed with AF the Consultant commented that there will be times when I would be asymptomatic. In other words in AF but not know it. My Atria/Atrium has been damaged - it won't ever repair - this is the bit that can cause blood to pool and put me at risk of a stroke. So, I'm on Warfarin for life.

    Who cares .... I do .... I'm now comfortable with the fact that medical science has provided me with the wherewithal to live normally, and with a degree of peace of mind.

  • No opinion about the weight loss issue, though it sounds like you're on the right track if no afib that long. I'll let you know how his wife's pumpkin muffins turn out, though!

  • With me, my AF would reduce by eating less because if I fill myself up even with a normal-sized meal, I get heart wobbles. I have lost weight by eating regularly and smaller meals, but think it's the "not filling myself up" that helps not so much the weight loss. I feel so much better for being lighter though and that has to reduce stress on the heart and overall system. Eating less is definitely the best diet there is 😉

  • Hi Gracey, back in 2014 when I was told I had Lone PAF and they didn't know what caused it was for me the silver lining of the AF cloud. I considered I might have chance of solving it myself with lifestyle changes including diet and supplements.

    Most of my lifestyle changes are generally recognised as doing you no harm i.e. lose weight, take out 90% of processed food, gluten, wheat, alcohol, cold fizzy drinks, daily brisk walks, reduce stress in personal and work life etc.

    The dilemma we all have is knowing which actions (incl any drugs) are the key to an AF free life and which are unnecessary. You don't say what your AF episodes have been recently but I have had none for 30 months (still on Flecainide) and plan to postpone an ablation as my QOL is good. On the other side a study recently released said ablations are more successful with Lone PAFs; but they would have to be 95%+ to convince me to go for it.

    So in the ned its a personal decision only based on the detail of your condition and possibly more quizzing your Cardiologist/EP. Good luck either way.

    PS lots of good advice from regulars already given.

  • Slim folk develop AF Gracey so nothing is clear cut. But, losing weight you can afford to lose, can only be doing good - if not for your AF then a host of other things. You shouldn't be looking at this as an either/or situation. Understand that you have two weapons in your armoury against AF namely losing weight (for which this Australian study provides optimism) and the ablation (which is the closest thing we have to a cure for the condition).

    Grab them both Gracey! Good luck.

  • Well, all I can tell you is that I've lost four stone in the past year and I haven't had an attack since last November, after a few gruelling days at an exhibition in Amsterdam when I was still very overweight... I was having at least one episode every three months. I still get very short (a second or two) runs, but my heart so far has always dropped back into rhythm.

    I was very overweight, to be fair. I'm not sure what the effect would be on someone of more average weight. I'm sure my size wasn't helping - after all, pumping the blood round all that extra body must have been a big strain on my heart. I still have a stone to go to be within the NHS 'right' weight for my height but I feel immeasurably better. Now, I'm just trying to eat healthily - if anyone wants any tips feel free to message me :)

    And that's something I never thought I'd say! Now all I have to do is keep the weight off!

  • Wow you kept that quiet Eatsalottie. You will have to change your name to Eatslessy! Well done, you have taken control of your body and it does feel good to be in control doesnt it?

  • Haha yes, thank you, Eatsalotlessie maybe! Yes, I'm very pleased I've managed it and yes, it really does feel very good to be in control. I can't tell you how relieved I am...

  • No Eatsalottie, please don't change your name - it made me laugh out loud when I first found the forum at a time when I felt I didn't have much to laugh about.

  • No worries, I still eat quite a lot, it's just that there are a lot more vegetables nowadays! :D

  • It certainly worked with me. About two years ago I went on a diet and lost 50lb. I originally weighed 250 LB and now I weigh about 200lb which is just about the right weight for me being tall heavy boned. I have not had any notable signs of AF. Another plus was that suffering from COPD I have not had an episode for two years.

    It is easy to lose weight but very difficult to keep it off. But with the strong incentive it has been easier. Every time I see some delicious high calorie food I think of the bad times I had in a hospital with AF and COPD.

    I found the diet that actually seems to work. It is called the 5/2 one. You can read a lot about it on the Internet.

  • I read somewhere that the unwanted electrical impulses often originate in the layer of fat around the heart (in layman's speak), so decreasing this layer can be very effective in decreasing the AF. So anyone who is 'overweight' is likely to benefit from getting down to 'normal'.

    I think Dr John Day also says that people who improve their lifestyle also improve their chances of an ablation being successful.

  • Not heard that one before though may be one of the possible contributors. I very much doubt that it would be very effective however it could be a factor in vagally induced AF (which many medics do not currently recognise).

    As my EP said it is very difficult to look back and identify the exact triggers that caused a person's AF particularly for the many who are in persistent AF when diagnosed. They do not know why different things affect different people very differently.

    Electrophysiology is a very new area in medical terms and, whilst there is a hell of a lot more knowledge now than 10 to 20 years ago, but it is only the tip of the iceberg so to speak. Also people when things are discovered there is often difficulty back fitting or back relating. So for instance there have been thousands and thousands of people in the past who died from strokes and it was just noted as that whereas in truth it was an AF induced stroke. Similarly doctors who brushed off hear pains and AF as anxiety issues and we all know that still happens today!!!

    Some of current medical thinking will no doubt, as has happened in the past, get turned on it's head.

  • Same here Tony85, having lost just over 2 1/2 stone on the 5,2 over a 4 year period I have kept the weight off quite easily. I now eat in a daily "window" of around 6 hours eating breakfast at around 1pm perhaps a snack in the pm, main meal at 7pm ish, then after 8.30pm fast until 1pm. Easy peasy now, don't have to watch what I eat ie. eat what I fancy but the weight stays off! No improvement with AF though!

  • Hi

    Yes he is an amazing cardiologist he has he online blog as well

    He looks at all the aspects weight, diet, ect.. i always look at his work and all research based

    I too was puting on weight every month from stress i had an episode of PAF very Scsry indeed in May

    Since then i have changed completky my diet eating healthy stooped caffeine completly stopped sugers process and now have lost alot of weight

    I think the theory is inflammation is more inclined to be high in overweight patients and this can also cause AF

    And Dr John Day yslks about this issue as well

    He also mentions that if the triggers are dealt with resesrch shows that AF can decrease or disappear which is amazingi if no other cardiac pathology is noted

    Well done for losing the weight as for the decision --to have the ablation you have to research and research

    You can post that question to Dr john day on his web page he answers back quite quickly

    All the best

    🌺

  • The LEGACY Study ( content.onlinejacc.org/data... - there's a pdf download button on the right hand side) was the main reason I finally decided to lose weight. I've lost 4st (56lb or 25kg) that's 25% of my body weight to bring my BMI down from an obese (31) to a normal (23).

    When overweight I would have PAF episodes perhaps twice a week, now I only have perhaps one episode a month and and the severity is reduced as well.

    Initially I just cut down on my food intake especially the carbs but after a short while decided to join Weight Watchers to give my dieting more structure and support.

    I am now able to walk 5 miles (8km) whereas initially I would battle to go round the block or go upstairs.

    Interestingly though of course the Study also indicates that it is very important to maintain that weight loss with minimum fluctuation to be most effective. So keeping it off is as important.

    I'd recommend anyone who's overweight to read this Study and consider doing something about it. It's certainly made a massive difference to my quality of life.

    I still maintain my medications though (Bisoprolo 5mg and Statins daily as well as Felcainide as a PIP) and I also take a Magnesuim Taurate supplement as mentioned by Dr Sanjay Gupta.

    I know that the PAF will probably never go away completely but I now finally feel in control of myself again.

  • Get to grips with what scares you about an ablation, Gracey. Is it that it might be a very unpleasant experience or is it that it might go wrong and turn out to have been a bad step to take? It's probably both of these and both have a very slim chance of actually happening, so feeling scared is entirely valid but most people feel afterwards that they worried about it being dreadful for no good reason.

  • There was a link posted earlier this year (I think) to a presentation made by a US Cardiologist. He is a regular visitor to China where he says AF is virtually unknown. I think he had a heat map which showed the US and Europe a deep red and China almost white. It made the point that the western lifestyle is a significant influence in the AF story and that, if possible, intervention in the form of diet, exercise etc can for some people make a big difference....

  • Unknown or undiagnosed? Also their life expectancy is lower. Their two top cause of death are Stroke and Coronary Heart Disease and they are both worse than the UK!!! See World Life Expectancy.

  • Interesting site that, thanks! Yes I suspect it is a bit too binary. Doubtless he would say that he has made allowances for lower life expectancy, poorer diagnosis etc and that the thrust of his argument stands..

  • I expect that there is a massive difference between major cities and country areas.

  • Also not necessarily if it doesn't fit his theory??!!!

  • The link to his website:

    drjohnday.com

  • Take a look at this:

    news.heart.org/losing-weigh...

  • Sure - however the article does not define the boundaries so to speak. I am pretty sure that all the people will have Paroxysmal AF. The average weight of an American is significantly higher in the US than here in the UK (I know a few years ago that was 20% but may have shrunk now as we are getting more obese people in the UK).

    For sure being overweight cause other health issues. Did all the people have just AF or did they have other comorbidities?

  • I was diagnosed with PAF 10 mo ago, put on meds. Had second 10 hour hard episode at 4 mo. On month 5 I insisted on seeing EP. He took me off daily meds and gave me PIP. Told me if I would drop 50 lb and exercise, get healthier, he couldnt promise no a fib but could promise less severe. Had third episode 5 mo later and he was right, it only lasted 90 min and was alot less severe. Ive lost 30 lb, go to gym everyday and workout. Havent felt this good in years. I have no other health issues other than weight and Im 63.

  • Gracey. If you are unsure rather than scared maybe you should call your ep. You could ask to postpone the procedure for say 3/6 months while you test your diet.

  • If it were me, I'd I would go ahead with the ablation to ensure it won't come back. The peace of mind would be worth it.

  • Thank you for sharing this, Gracey! I have not had an ablation and I got my first AF diagnosis in my early 40s, but was misdiagnosed (I believe) with generalized anxiety and panic attacks in my mid-30s. For me, at least, weight and diet have not been a factor as far as the number of episodes of AF I have. I have always been a very busy, very active naturally thin person who is conscious of my food choices, but will occasionally indulge in a chocolate treat. It wasn't until about the time I received my AF diagnosis that I began to struggle with unexplained weight gain. I chalked it up to changing hormones given my age, but my MAJOR complaint when I saw the cardiologist was my inability to make it through my workout (I exercise faithfully at least 5 days a week) without going into an episode of AF. At one point, my decreased tolerance for exercise became so bad that everyday walking to care for my home and pets would trigger an episode. For me, I don't think the primary cause of my AF has anything to do with being overweight or out of condition. However, I DO think my AF has made it very difficult to maintain a healthy weight even with careful eating habits. It wasn't until we found the right combination of meds that my weight began to return to my "normal" because I was able to live my life again the way I did before my AF was not controlled.

    I'm not sure if my story relates at all to what the others have posted already, but thought I would share.

    All the best! KeL :)

  • I am so very grateful that you have all taken time from your day to share your stories. You have no idea how wonderful it is to have you all in my life. After reading all your replies I know that my decision will be the right one and as soon as I'm sure you will be first to know. Yes, it's scarey to decide either way but it's like the poem, the road less traveled, we never know but we must follow the path we choose. Since the procedure is next Wednesday, this is it! Keep you posted and again my utmost thanks, Gracey

  • I eventually found the evidence you described in your post. Please see news.heart.org/losing-weigh...

    I was only 10 pounds overweight and lost a stone but have put back 5 pounds but still within weight limit. I wonder if that makes a difference.

    acc.org/latest-in-cardiolog...

    I tried to find the video of his lecture on this subject matter but it now seems to be missing or taken out. However, the write up also explains.

    Found another video but not as good as the one I watched earlier this year.

    One problem too much protein in the form of meat is not good for you either. The only other thing I can think of is that one needs to avoid cakes and biscuits and sugary foods. We eat brown rice, and oats, etc. which are slow releasing carbohydrates. Being small I need to cut down on my intake and that is the only way to stop fluctuations of weight. Not easy!!!

    I don't think remission applies to AFib. only the EP can help you in making an informed decision.

  • drjohnm.org/2015/02/a-new-w...

    I found the video on the lecture by Prash Sanders on Afib. It is with the web page of Dr John Mandrola.

    Hope this helps.

  • Hi Gracey . I was a sufferer of Afib for over 3 decades i was never overweight was always slim .I had an ablation just over 3 months ago and i seem to be AF free it was the best thing i have done it was very scarey for me going into the unknown but hey we have to take risks i hope it works out for you and you make the right decision

  • Thank you for your positive response. We hear so many negatives that it makes decision very hard. I'm glad you are doing so well, best health to you. Gracey

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