You make a good point as l’d also like to know the stats you state above. My mum had a stroke aged 77 and didn’t survive. She’d previously had a heart attack at 75. Did she have AF? I’ve no idea but I do and I’m 69, don’t drink now and have never smoked. Interesting. X
I don't think anybody can answer the question you want answered Matt. Nor do I necessarily agree with your 25%. I have always understood that 20% of strokes are AF related and that those strokes represent 80% of the least recoverable ones. I also remember a presentation maybe 8 years or so ago which stated that in Britain we could prevent 8000 strokes a year if all AF risk factor patients were anticoagulated. Hopefully that may since have improved.
I know that in areas such as Bradford where they have a finely tuned system to identify AF in the population and introduce prophylactic anticoagulation, they have the lowest stroke rate in UK.
Against this, Dr Sanja Gupta of York Cardiology has said on more than one occasion that it is not necessarily the AF which causes strokes but the company it keeps. Regardless of how healthy one's heart may otherwise be it is relatively rare to find people (apart from gym bunnies, endurance athletes and fast jet pilots) who present with AF and no other comorbidities.
It must also be accepted that anticoagulation reduces stroke risk by around 70% bringing it more in line with the general population so why would one not want to take anticoalgulation?
Regarding the original question maybe looking up The Framlingham data might provide what you are seeking. My mind is rusty but I think the name of the trials which produced the data is correct.
Dr Gupta also says that AF is a strong risk factor for stroke, and that modern anticoagulants are the main way of reducing the risk. He questions, as you suggest, whether AF is the MAIN cause, as he quotes studies which shows that though 'cured' with ablation or effective drug treatments for rhythm, as many patients go on to suffer stroke as those in AF permanently and taking rate control medicines. He thinks the real culprit may be atrial myopathy caused by various other symptoms and life style.
What bugs me is the side effect of medication, at the moment suffering aches and pain most of the day for the past 3 weeks! I was never like this till being given Apixaban and it’s unbearable
The AFA did a detailed study a few years ago which was included into a White Paper for the UK government and included a study in GP practices comparing stroke stats between those GP practices who prescribed anticoagulants for their AF and those who didn’t. I remember the results as being absolutely startling and convinced me!
Sorry I threw away the paperwork when we moved but maybe still on the Arrythmia Alliance/AFA website?
From what I remember, an association between AF and increased risk of stroke was statistically significant, but can’t remember the actual numbers. Bob has been involved for far longer than I so I would go by what he quoted.
Look at the reference links at the rear but you may find the graph on P17 of interest. That convinced me at the time.
I think you make a very good point about general health and fitness and I believe this is taken into account with the CHADS score calculation but I find that specialists disagree, as do the numbers between studies and that suggests that there is link between stroke and AF but that doesn’t mean AF causes stroke. Increasing age seems to be the biggest risk factor ie: 65+ your risk of stroke increases so added to AF it increases more, then CVD, hypertension, Diabetes and so on.
Now all algorithms like this calculate population risk - not individual risk and that should be absolutely clearly stated.
My grandson has just submitted a mini thesis on Ethical Dilemmas in AI learning - what’s that got to do with the subject? quite a lot because AI algorithms don’t differentiate between difference - very like the medical profession - personal bias plays a huge part on recommendations made. I have hope for the future!
There are factors on the CHAD score which will rate you as needing an anti coagulant for just being. For a woman its impossible to avoid anticoagulation once over a certain age -65.....an EP told me that. I loved to know how the evidence for that stastical evaluation was made....... The implication being that all women over a certain age are high risk for strokes yet historcally women have lived longer than men.Am not questioning the evidence once diagnosed with Afib......that is strong but a woman of a certain age and no Afib?
Sorry am a doubting Thomas.......its a bit like the push to put you on statins. My cholesterol is low (excellant my GP said no changes to improve diet would alter that) but my ratio of cholesterol is imbalanced......so the recommendation was a statin. However the research out there shows that having low cholesterol but an imbalanced ratio has no effect on the long levity of life. I therefore declined. I feel its big pharma at work promoting their products. I find it scary, more so that big pharma dont have to release ALL their data.....they can cherry pick. Unfortunately am no scientist so dont have the skills to pick through available data for myself so have to rely on those that do.....
Nope thats not what the EP said......at all. My mother never had A fib yet she was also put on a blood thinner. She complained bitterly about it. Now I get why!! EP said post menopausal and over 65 scores you two. Unavoidable.
I think you highlight a flaw in using medical algorithms generally - statins & anticoagulants in particular, regarding individual recommendations as all these algorithms do not account for individual differences, as I sited in another thread.
All the evidence is collected is quantitive research through what is called ‘herd statistics’ ie: population quantities reporting links and is not adjusted for qualitative factors ie: adjusted for personal factors such as genes, ethnicity, gender, personal ageing factors (ie: not just chronological age) etc.
We are getting nearer to individual medicine and some site within the next 10 years but in meantime - these algorithms are the best we have. Thankfully, we all have a choice as to whether or not to accept these recommendations, or not.
Thanks CDreamer.....I guess thats the flaw in that approach. May the individual approach come into play soon! As I do have P-Afib I can see the need but for my mum it was an ageism response. She was healthy for most of her life....not like me! 🤣 She did have rubbish knees but frankly the rest of her, health wise, was spot on.
Chads and Chads2vasc2 were created to assess stroke risk for patients with AF. The EP is quite wrong. Also it is correct to say that +1 for female only comes into play when other scores apply. In fact there are many very knowledgeable people who question that +1 at all.
🤣🤣 precisely. Female plus age once over 65 you qualify. Without female you wouldn't unless you develop another co factor. Why does being female give you a score of 1? Is it big pharma at work again?
Again I say. The +1 is questionable in many countries. Also these systems were developed for people with AF. They do not apply if you have never had AF.
What is desperately needed is medical treatment designed for women and not lumped in with men. It is known the female is a more complex anatomy and experience heart attack for instance different men. There was an article in The Mail the other week. Lots of trials do not include women because ‘we’re too difficult’ our hormones etc.
Have to laugh at the "too difficult" Lacylady! Yet they cope with men's testerone? How did they manage to come up with HRT? Did they trial it on men first? 🤣 Seriously though you make a very good point. The trouble really starts right at the beginning the parameters & research is dominated by the fund providers....usually big pharma. And then again any treatment is governed by health providers.....in our case nhs who have increasingly restricted meds and criteria of treatment. The two together do not bode well for holistic health let alone optimum well being. Its why more and more people find themselves having to go "off piste." Lol....
You don't have to go on anti-coagulants if you don't want to. I chose to ignore the consultant that saw me and wanted me to go on anti-coagulants as neither he and my GP have ever seen my arrhythmia. (Even to this day.) I did have a major stroke after about 2 years so I've always regretted that decision, as I can never get that piece of brain back again. But going on anti-coagulants is avoidable because it's always your choice.
Thanks Roy. 😊 My Afib was picked up on 48hr monitor that I wore. The cardiologist rang me & told me that they had all got a shock when they looked at my trace. He said you mustve felt really poorly. I said I did. He sounded shocked! So there's no doubt I have P-Afib. Pretty well controlled with the calcium channel blocker. So thats why I've played it straight down the middle & compromised with the dose rather than stop all together.....tempting though it is! And I have been very tempted!
My Afib is only picked by my Garmin heart monitor when I'm cycling,(254 bpm at it's worst, made me feel a bit dizzy! and the consultant was impressed when I told him.) but I've become so good at controlling it with my diet I hardly ever get it now. I have learnt my lesson now and religiously take my Apixaban every 12 hours though. Only other meds I take are a tiny dose of Statins 3 days a week. My GP said that's all I need as I have such low cholesterol any way. No way I want to risk being completely paralysed on the stroke ward ever again. 🛌😱
Mine was 1.7. But the reason I take the 7.5 grams of statins a week is to give some protection against atherosclerosis which my GP tells me this tiny dose will do. She says everyone develops atherosclerosis in their brain as they age. Mine is very limited given my age but every little helps.
I gave up eating white sugar 40 years ago and I try an avoid anything with white sugar or a sugar substitute in still. Just empty calories as far as I'm concerned which is an easy trap to fall into as you age. My mother had type 2 even though she said she had a good diet, but I looked in her freezer once and it was full of choc-ices which she didn't regard as sweet when I told her she shouldn't be eating them because of the fat content alone. 🤣 My dentist can't understand why my teeth never need the hygienist. No sugar or white bread and I eat raw carrots nearly every day.
My neighbour has type 1 and that is really awful and he has trouble controlling it. He often has an insulin related incident and needs help, Fortunately my daughters a senior nurse so she knows how to handle him.
Love sour dough, I’ll have to learn to make it I have had bread Baku g machines for many years. I buy good whole meal flours and add mixed seeds to slow digestion.
Matt: "Surely there are more detailed stats somewhere than that general stat we are fed "
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Surely. But they don't make it easy for us, do they?
I know those stats exist, because 12 years ago I had a discussion with my cardiologist about strokes, afib and thinners (ACs).
He wrote two numbers on a chalk board after looking at some charts. One was my yearly percentage risk of stroke because of Afib and my CHADS2 score if I took ACs. The other number was my yearly percentage risk of stroke if I didn't take ACs.
While both those numbers were not necessarily perfect, at least they gave me something more helpful than many of the stats, which in your words, "we are fed".
You make a good point regarding risk increasing each year. Age is one of the biggest risk factors so every birthday (chronological ageing) - our risk automatically increases.
From one of my posts (easier than to write it again...):
"It is an official medical estimation that, in any disease, the number of infected is about 5-10 times larger, than the number of diagnosed. If we presume that the real number of AF sufferers is only 5 times larger, than the real risk of having the stroke, when in AF, is 5 times less than officially stated. We come to the conclusion, that the risk of stroke, for AF sufferers, is the same as in general population.
I must mention, to have read in an article, some 5-7 years ago, that the research has proven, that the incidence of stroke is the same for AF sufferers and those without AF. I am sorry not to have been able to find this article again, despite all efforts. Maybe removed from the web, because of spreading "false information"..."
Never trust any "scientific results" if there is a lot of profit hidden behind it!
As a related aside, as mentioned Dr. Sanjay Gupta talks about it being "the company afib keeps" and shows studies where stroke risk is the same even when afib is successfully treated say with ablation. For me, that begs the question, if it's not the afib, then why aren't all people, even those without afib, with the same risk factors on ACs? In general, the guidelines do not recommend ACs in those cases but they do with us. Interesting.
No one actually knows and we get different responses from the specialists as they don’t appear to actually know themselves .
AF is officially a complete head muddle for us all the experts and so sad that we are all suffering both mentally and physically . With more research at least they could help us mentally in dealing with our issue .
Stroke risk is a massive concern for us all and it may not even be an additional risk
I guess I am one of those rare people that have Afib but no other medical diagnosis. It's been very frustrating for me because 2 yrs ago at age 67 I had to take a steady dose of drugs (blood thinner and an antiarrthymic) for first time in my life and found I don't do well with drugs. Metoprolol gave me an itchy head, Eliquis an upset stomach and Xarelto an itchy rash on back. So I just took the meds and suffered. The Dr. said I may be in a group of people very sensitive to drugs which does not bode well for me as I get older. However, this pushed me to get over my fear of ablation and had one in January. Today is my first day drug free and such a good feeling. I stopped the blood thinner one week ago and my rash is going away. The Dr. told me they have no idea why someone like me develops Afib. A Dr. I know socially told me in ER he has seen many cases of internal bleeding caused by blood thinners and that years ago they did not give all patients with Afib blood thinners like they do now because of bleeding risks. I have always wondered about stroke risks also with Afib.
You have all my sympathy. I have P-afib and do need to take medication to control the pace of my heart. The anti coagulants I have struggled with. The stabdard dose has had me sent to repeatedly to A&E due to bleeding or fast tracked due to bleeding. I have struggled with my teeth bleeding so much my teeth hurt & I looked like a vampire....really unpleasent. Cant be right!! So have ended up on a lower dose for QoL. That still causes bleeding but far far less and its manageable. I darent not take them as I live in fear of a stroke........but I do just wonder if the treatment that causes bleeding or the risk of bleeding to death might just be the higher risk of the two .......for me at least.
Wavelines. Hi. Yes that's the conclusion I have reached. Every time I take noacs I bleed. So I decided I would rather take the risk of stroke and stopped taking them. I am sceptical about all of the risk figures anyway. You can adjust statistics to fit any agenda. I have plenty of natural thinners in my diet anyway. Ginger, turmeric and various supplements. I will not spend the rest of my life living in fear as fear attracts illness and imbalance to your body anyway. Always look on the bright side of life. Dee dum, dee dum dee dum dee dum.☺🥰
Unfortunately it is difficult to analyse every case in the detail you are looking for, most standard clinical treatments are determined by current statistical knowledge of the risk factors.
A great deal of research is being made into treatments for many medical conditions and eventually our DNA will be analysed along with blood etc and an individual risk/treatment profile will be produced.
We're not there yet but not far off, until then do your own research (as you're obviously doing) and come to your own conclusions, it will give you some level of confidence and lower stress levels which is probably more important than any meds.
I suspect this will be a long time coming as it will probably mean less drug consumption and therefore less profit for Pharma. At the moment the one size fits all dosing leaves many people ( especially women) overdosed on certain medications. It is notable that there is a larger proportion of complaints about the side effects of the drugs used in afib from the female members of the forum. Personally I cannot tolerate any but the tiniest dose of beta blockers. I cannot tolerate the full dose of Apixaban . It increases my arthritic pain to very severe . I cannot tolerate painkillers on anything other than an occasional basis. So I have the choice of taking the one size fits all dose of Apixaban and living everyday with pain and a very much reduced QOL or taking a reduced dose and increasing my risk for a stroke that might never happen anyway.
Interesting discussion. I am 66 got AF mid triathlon in Russia 3 years ago. Blood pressure normal, heart healthy, no other health issues. Chadsvasc score was just the age related point(s). AF got more frequent although the ‘burden’ wasn’t high except it stopped me exercising beyond moderate. 10 months ago I had an ablation. I gave up alcohol (was 25 units/week). Drs said my stroke risk was low. They only put me on AC (Edoxaban) for the ablation and since. Ablation was successful it seems, no AF and post exercise ectopics went from frequent to very rare within 6 months. Drs now say AC is optional. I tolerate them well. Still worried about a stroke I think I will keep taking them. Are people with stroke risk more likely to get AF or the other way round or both? (‘the company it keeps’)? Is it best to think of the medical causes of stroke - AF can cause ‘pooling’ in the atria which increases clot risk which increases stroke risk especially if blood is thick?
Firstly you have to find a study that you can understand and which sounds reliable, then you will probably find in most cases it has been financed directly or behind a curtain by Big Pharma - who else could/would pay for a large reliable study. I have learnt a lot in the last 2 years about publicity or the lack of it for vaccines and other available drugs.
I do therefore wonder if more searching by us is worthwhile. I have declined ACs (at age 68, Lone PAF in remission for years, BMI 23) on the basis that my cardiologist is premature with his advice. Instead, I make sure I stay active, drink regular extra fluids and take Krill oil and fresh garlic daily. Also important to take steps to increase your enjoyment of life reducing the relevant effects of stress eg just replaced retirement with very satisfying social work at a part-time level only!
Well said secondtry. Im retired officially but went back to my job part time. I emjoy it even more. After three years of doing this am dropping my hours again though as I also want to do other things. Maybe thats a sign of a happy retirement when you can pick and mix!! 🤣
Im with you on that one , I'm a 77 year old female. Apart from age and Gender no comorbities what so ever. 52kg but because of age and gender score 3 on chads. AND my PAF doesnt keep any company what so ever. Hate Anticoags but still take them .
You could try the Stroke Association for stats. As I've written many times in Health Unlocked, I'm a stroke survivor with a long history of running (at my peak over 2000 miles a year), Orienteer, cyclist (14 miles a day to and from work), gym bunnie, Pilates and yoga, non-smoker, 3 units of alcohol a week, BMI 23, no family history of stroke. I had / have AF that was ignored by the medical community because I was fit.
Am I a statistical abnormality? Who can say. I have had pulmonary toxicity secondary to amiodarone and dronedarone, and that's 6 people in 100,000.
Stroke support has been lacking but is changing. I'm in a small group of stroke survivors and clinicians working with the CCG, that this year has brought forward a local hyper-acute stroke unit. Last week I had three 3 hour online sessions working with a design consultancy on a revised web site for the Stroke Association. I too am angry about many aspects of stroke: don't start me on the DVLA and DVLA Medical Group. Channel your anger into bringing change to AF and stroke.
I have pretty much felt the way you outline. The research isn’t yet clear enough to show what causes people with AF to develop thrombosis and stroke.
Some work I recently read suggests the shape of the left atrial appendage might largely be responsible. Now that’s interesting.
But what it really showed is that we don’t yet know, so, for now, anticoagulation for all those deemed at at risk seems to be prudent as a balance of risks. But what a balance that is since those anticoagulants carry their own risk of haemorrhage and when temporarily stopped for surgery increase the risk of thrombosis.
Seems to me that stroke risk (like AF itself) is made up of a number of factors, hence the difficulty for doctors to give the right advice without an in-depth on the individual, which never happens except perhaps if you go to an Integrated Medical Practitioner.
Oh I'd love to be able to see an integrated doctor. How comforting that must be; and yet their knowledge cannot be greater than what is known and that work on the LAA I mentioned showed me just how far doctors still need to go to understand the workings of the heart. It seems still unknown whether AF is the cause or the result of other changes, such as atrial "stretch", another aspect that seems to be a feature of the condition in many people. I've come to think that arrhythmias are not really an "electrical" vs. "plumbing" issue but that it is all, essentially, down to some aspect of the "plumbing", even if at a "micro-" level, causing the "macro-" electrical problems.
It's sure that the heart is a peculiarly difficult organ to diagnose and treat being so well hidden behind the rib cage such that even the best MRI and CT scans of it are often insufficiently revealing. I hadn't realised until recently, either, that the cells of the heart can never be repaired or replaced - hence many of the problems it causes.
Yes, I think we are a long way from identifying the right approach(s) to AF. As I believe it is a fast increasing issue, maybe there is a clue there as to why lifestyle changes are probably the strongest tool we have.🤔
That's some great questions and I agree. This reminds me of the questions I had during Covid with masking, vaccines, vaccine side effects, vaccine deaths, and hospital deaths caused by other risk factors. (Message was only "Fear Mongering). These drugs are pushed by pharmaceutical companies to Salesman to the Medical Community and to media. Unfortunately, you won't find your answer here. I have tried with Vitamin Supplements for Afib. Follow the money. Every article you read will push drugs only with hardly any other alternative methods just similar to vaccine alternatives like Ivermectin etc. These pharmaceutical companies are holding back on alternative treatments because regulations state the vaccine cannot be used on an emergency use basis if there are other treatments available. Follow the money. Keep trying to use whatever data you can find. Having medical tests available from your doctor to determine your health status is great and helps knowing where you stand. The data I use now is "Knowing my own body!"
Sometimes I feel as humans we don't want to admit that life can be so random. None of us can predict what is going on in our own bodies. A friend of mine healthy and 57 collapsed at work last year and died..brain aneurysm...who could predict these things? So I guess we just have to take or not take drugs based on what we feel is right for us but also strongly take into account medical advice. For me having an ablation meant I could get off all meds since Afib is my only issue and that possibility was worth it to me. It's early days still but it seems the ablation has worked for now...but only time will tell.
In order to make your personal decision either way, you need to be under no allusions that as far as I have read Big Pharma is there to make profits for shareholders (their fiduciary duty) before considering customers' health, they are the only ones who can afford to make expensive population studies and they then have the option to let only the drug preferred ones see the light of day. The regulation bodies that exist eg governments, have been shown under the spotlight of Covid to be largely captured.
I wish I was a conspiracist but sadly I doubt it. Many across the world now understand the problem needs fixing nb The Better Way conference in Bath last weekend worldcouncilforhealth.org/e...
My question is what about hemorrhagic stroke? I have read that they count for 13 % of all strokes, and brain bleeds are more common as we age? Anytime I have tried to discuss that with a doctor regarding AC, I fail to get a meaningful response.
Am so so so sorry to hear what happened to your Mum. Thats dreadful & words to be honest fail me. Big hugs xx I felt the same on the full dose of anti coags constant bleeding, fast tracked twice, my gums bleds so bad my teeth hurt & I looked like Dracula! Yes I felt I could also end up with a very big bleed. GP recommended half the dose & that is tolerable....though I still bleed just far less. I do wonder if actually my blood produces all the anticoagulant that I need already but live in fear of a stroke so settled on the compromise. My EP would not approve.....his answer is to have the heart op.
For what it's worth, I recently asked my primary care physician and my cardiologist about my stroke chances since I have to discontinue Xarelto prior to an upcoming routine colonoscopy. Since I'm in permanent afib and my pacemaker indicates afib 100% of the time, I am especially concerned about discontinuing my anticoagulant. My primary care physician said that without taking an anticoagulant at all, I'd have a 2-3% chance of having a stroke. My cardiologist said that if I didn't take an anticoagulant for a year, I'd have a 7% chance of having a stroke. I hope they are right but I'm still not totally convinced that I'll be protected without it. In the end, my EP has recommended that I discontinue Xarelto 2 days prior to the procedure.
The question is 2-3% of how many? 100? 1000?10000? The meta analysis I looked at was using 10000. It also showed increasing number of brain bleeds with increasing age until the difference in prevention vs brain bleeds was within 2%.
When I decided on my AF treatment approach an important outcome was a reduction in my stress about my condition. I survived an AF stroke, so reducing stress for me had to allow me to BELIEVE I had significantly reduced my risk of a second stroke. In addition to whatever evidence I unearthed, I needed to 'buy in" 100%. That meant, for me, believing I'd done the best I could in determining my choice and having no regrets regardless of outcomes. I decided it was bad enough living with the minimal stroke deficits and the ongoing AF, I needed to ditch the worry.
Well I have p-afib. I am 66 and female. I had every conceivable test to find a cause but they couldn’t find anything. I can’t take any medication because of my naturally slow heart. An ablation they feel is not necessary at the moment as the symptoms aren’t bad enough. However I am on apaxiban. I don’t have any side effects but don’t like taking it. Family history of haemorrhage strokes yet still they say my greater risk is a stroke caused by a clot when in afib. My cardiologist and ep both said that. But who knows Jane
Well not really nothing I do seems to make the slightest bit of difference. Alcohol used to be a trigger but it comes on without it. Bit limited on exercise because of an arthritic knee. Don’t have a weight problem. Cut out sugar no difference. Tried ubiquinol no difference. Magnesium just the same. Cut out salt again nothing. Increased water, eight hours sleep a night, no processed foods, no caffeine etc etc !!
Have you doubled down on dental hygiene? Not often mentioned here but any gum bleeding can import infection to the heart & contribute to exceeding the AF threshold?
I’ve had SVT since early 50’s. Diagnosed with PAF in 2020, then T2 diabetes in 2021 😳Father smoked, stressed had high BP as far as I remember had massive strokes at 50, died.
His mother had had strokes and was paralysed for a time before passing. His sister died at 67, stroke at night. 🤷🏼♀️
I’m soon 65 got put on Apixaban when diagnosed with T2 last year. Currently suffering pain and aches I think is the Apixaban and will have to consult dr or consultant as I won’t suffer this any longer
I am a statistic who presented with stroke, Af and 4 days later in a Carotid Scan Thyroid Cancer!
I had the cancer Papillary removed 4 months later.
I sailed through.
I fought bad meds metaprolol but even Bisoprolol did not control the fast, rapid heart rate.
Last December a private Heart Specialist intoduced me to CCB Diltiazem 180mg too much sio I balanced on 120mg AM and 2.5 Bisoprolol pm.
Interestingly I had Johnson & Johnson's horrid mesh removed with all the inflammation and Vagina sewn up.
2 weeks ago Dr said now no AF presenting.
Last Friday again as above.
Tests have been ordered!
Is it an inflammatory condition that causes AF? Seems so.
Fingers crossed.
I am now 73 years, Stroke in Sept 2019 is 3 years ago.
Cancer removed 4 months later. No RAI no Suppression thank you. I take the minimum thyroid synthetic pills. 125mg daily without food for 1/2hr. I take them under the tongue.
Am when I am food free. 5am.
No gall bladder (disintergrated). B12 deficiency.
Will my statistical info put a spanner in the works.
Being less than 65 in 2020, female got a 1. Last year diagnosed T2 diabetes gave me another 1, hospital slapped me on anticoagulant anyway, no consultation
Definitely not, I will not take a statin, was ‘offered’ in even though my reading was 4.8. Nasty drug. I dint see the point of having drugs that make your like a misery.
Kardia always says possible AF never just AF. Basically, possible AF means AF!
If something is too good to be true, it usually is. My GP was extolling the life saving properties of a diabetic drug Metformin, I’d just read all those who were on it saying comple opposite
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