I'm a stroke lived-experience person since 2016 and, I've had atrial fibrillation / flutter that started years before that. Intially paroxymal, later becoming permanent. I was the subject of a paper (available on the Internet) on pulmonary toxicity (aka cryptogenic organising pnuemonia) secondary to dronedarone and amiodarone, so you might say that my AF is well documented. I signed up to the current OurFutureHealth study. This a great chance to pick up undiagnosed AF in the population, as Primary Care seem loathe to screen for undiagnosed AF as apparently the Cambridge University SAFER study report is awaited. I was surprised that my metrics recorded by OurFuturehealth show my heart rhythym as "regular". Whilst the results are stated as "not intended to be a personal health check", there is a risk that people may remain undetected and therefore not evaluated for anticoagulation.
Detecting undiagnosed AF: I'm a stroke... - Atrial Fibrillati...
Detecting undiagnosed AF
I think for as long as AFA has existed we have campaigned for regular screening for AF here in UK. A simple pulse check is often enough to discover it. Regular events like public space ECG sessions usually present a few new cases but since paroxysmal AF is elusive it is not foolproof.
Hi Bob. It's been a year since I was last here.
In March 2023 I was a participant in the AFFIRMO study, and I had an email from Trudie Lobban explaining the difficulty in getting Primary Care to screen for undiagnosed AF. Since then, I've spoken to stroke and AF lived-experienced people in their 30s; these are Zoom or Teams sessions through the Stroke Association and a number of University studies. Last week during a Zoom meeting to discuss a university study on undiagnosed AF, I displayed on camera an AF waveform on a finger oximeter, that I had taken for five seconds during that meeting. How hard can it be to do that? Someone doesn't even need to be in the Primary Care Practice. If AF may be present, then a five lead ECG can be scheduled. For runnners, cyclists etc with exercise induced AF (that was me), a Bruce Protocol test would provide definitive proof. The huge cost to the UK economy for people who have strokes, disability benefits, medication and NHS costs, revoked driving licences stopping access to work. Early detection would help to ameliorate that. I'm a grumpy old man, but I get frustrated when the same furrow is being ploughed with few results.
You are preaching to the converted and many many years too late. Interesting fact though that it was 2007 from memory that I first learned of the link between AF and stroke. Prior to that nobdoy, but nobody had ever mentioned it. OK I was anticoagulated for my ablations but it was never mentioned other than that.
Last July I took part in the SAFER trial. I was sent a handheld device and for three weeks, four times a day I took a single lead 30 second ECG reading which was then transmitted back to the research laboratory. The device was then posted back. Within a week I was contacted by my GP surgery to inform me I had AFib. Although I suspected that for 5 years I had some type of arrhythmia it had not really bothered me. Also at no time when I used the device had I felt that I was having an episode. I was immediately prescribed an anti- coagulant and Bisoprolol and shocked to be told of my increased risk of having a stoke. If screening of this nature was rolled out across the country it would surely help to save so many of us from serious health problems. I feel very fortunate as I was sublimely ignorant as to the high risk of having, on occasion an irregular pulse. More so in that my mother had two strokes and numerous TIAs and an irregular pulse but we were never told of the connection back then, it wasn't even given a name. My very healthy sister has recently had a stroke and also been diagnosed with asymptomatic AFib. I feel very fortunate that I was diagnosed before I too had a stroke, which with my family history was highly likely. Surely prevention starting screening at maybe 70 years would in the long run save the health service money.
When I was a boy, if you went to the doctor, for anything, the first thing they did was take your pulse.
Are you saying that this is no longer done at GP face to face consultations in the UK? I have to visit my GP every six months for a prescription renewal. The previous GP here ( who died ) required a visit every 3 months. No visit no prescription. My GP takes my pulse and BP, listens to my chest and heart and examines my abdomen. My husband also gets interrogated about appetite , bowel habits, digestion , sleep etc on his visits. Perhaps because the doc feels that men are less forthcoming with problems! All this is routine and my GP would be uncomprehending that patients could visit their doctor and not be examined in this way . But then he is amazed when I tell him about telephone consultations.
Yes unless they suspect you have a fever or some other reason to take it. We have campaigned to have pulse check included in the annual flu jab appointment with little result. Can't recall the last time my GP checked my pulse at a visit but it was done in hospital during recent appointments for other conditions. (Got to have a bone marow biopsy tomorrow and bet they don't do pulse check).
That's appalling. Bon courage for the biopsy.
They tell me it isn't habit forming. LOL 😁
I certainly hope not Bob, as I'm having one tomorrow too 😊 Hope they both go very well! I'm in the US, so you'll probably be all done before they even start on me. Sal
All done and not as bad as I had expected. Sam says probably helped by having a very attractive young nurse holding me down!lol 😁
I just got home too, and all in all it wasn't as bad as I expected it to be. They were all very nice and polite to this old lady LOL
The Primary Care Practice here relies on text enquiries for an appointment, so no guarantee of a face-to-face appointment. My nagging about using oximeters with waveform display must have had some traction, as on the last visit I was fitted with an oximeter on each hand (I have Rhydor's)!
Hopefully, the Primary Practice will invite me back again this year to talk to university medical students about strokes and AF. I must admit that it was dispirating a few years ago, when a group of third years had never heard of FAST. Then again, the ambulance crew in 2016 didn't realise that I had a stroke, as I didn't have FAST (stroke in the visual processing area of the brain that also apparently affected the lymbic system). Add to that two GPs (now retired) who didn't recognise the classic symptoms of subarrachnoid haemorrage.
It's important that we lived-experience people are participants in medically related studies and, talk to medical students. It also means that I can now bore about medical subjects too!
Hi Oldforge73
Your comments are interesting as the bit .... and I quote .... you
“Also at no time when I used the device had I felt that I was having an episode. I was immediately prescribed an anti- coagulant and Bisoprolol and shocked to be told of my increased risk of having a stroke”.
and again I quote you
“More so in that my mother had two strokes and numerous TIAs and an irregular pulse but we were never told of the connection back then, it wasn't even given a name. My very healthy sister has recently had a stroke and also been diagnosed with asymptomatic AFib. I feel very fortunate that I was diagnosed before I too had a stroke, which with my family history was highly likely”.
These two parts of your comments struck a real chord with me.
Following my own AF diagnosis in 2010 I found a genetic connection by accident when putting together some family geneology. My paternal grandfather died after a series of strokes aged around 82 in 1964. He had 3 children one of whom was my Dad and he died of a non related cardiac issue. His brother and sister however died from cardiac issues, details unknown.
In Jan 2010 I woke up one morning feeling as if I was going down with flu. Later in the day I felt worse and had been monitoring my BP. I noticed over 6 hours or so my BP had dropped from around 136/80 ish down to 76/50. Spoke to my GP who saw me immediately and booked me into hospital A &E, where I stayed for 6 days and where paroxysmal AF was diagnosed. Bisoprolol and Warfarin were started immediately.
In later years my daughter was diagnosed with AF during both her pregnancies. Once she had stopped breeding - the AF stopped. Following my geneaology interests I discovered my 2nd cousin ( I think that’s the right term ) had been diagnosed with AF. His grandfather was a brother of my grandfather.
It’s hard to know what genetic research is being/has been undertaken about the liklihood of a person falling down to AF in its various manifestations but I am sure more could be done and have often felt this way after reading this sort of topic many times on this forum since 2010. I have also found that in many cases a genetic condition often skips a generation or more before it appears suddenly in another member at another moment in time.
John
I am currently trying to get my local surgery to look at doing a simple AF check during annual examinations. There is palpable resistance, which, cynically I put down to antithesis to patient's suggestions. Last I was told that nurses there aren't trained to use stethoscopes to listen to your heart in the same breath as the drs prefer the nurses do BP checks the old way (by using a stethoscope)
When I trained as a nurse at a top London hospital we only had sphygmomanometers and stethoscopes. It is true that we were not trained to listen to the heart. Years later, working in a GP practice, the GPs insisted on using the cuff and stethoscope over the newer automatic monitors - more accurate.
My point is that listening to your heart is quite different to taking an accurate B/P reading.
Thank you. Makes more sense, though ironically the gp who told me they prefer cuff and stethoscope BP readings wasn't aware that in fact the nurses use the electronic monitors.I had suggested to them that if the heart sounded odd at all then they could refer to a Dr or book an ECG. It's often said on this forum that a pulse check can reveal AF so I assumed as the nurses had stethoscopes that would be better.
hi - big sigh re GP not aware of what or how their - presumably - practice nurses use for fundamental procedures.
I personally have found that a radial pulse is a good first step to pick up an irregular pulse but needs to be over 60 seconds - 10 seconds is hopeless!
And yes, there was always a GP available for me to refer to. But that was a few years back and how things have changed - workload etc.
Thank you, I aim to keep trying on this. I am entirely asymptomatic and rarely go to the drs
During a Bruce Protocol test for AF, the monitoring nurse used a pump up sphygmometer and a stethoscope. That says it all.
Get a smart phone and a Kardia and the app and the next time you feel that you are having an AF episode take a reading and send it to your doctor in hopes they take some notice! My surgery told me to stop sending them but that was after I had been prescribed Flecainide by an EP we saw privately. At first I took it as a PIP but now that I take it regularly, I have not had an episode for well over a year and the last short one must have happened around the time I must have been infected with covid with no other symptoms but a positive test, when an extra pill ended it in a few hours. Good luck!
Thx. No good to me personally as I am in AF all the time (and diagnosed as such) but I think this is sound advice for those out there wondering .
It turned out that our surgery has the equipment to read what your heart is up to but they only used it on me once after my paroxysmal AF was finally diagnosed elsewhere! I never seem to get annual check ups either so it’s comforting to use my Kardia occasionally to see how well I’m doing or in your case, you could follow how yours is getting on.
Poor you - hope you have good care.
Thx, but I am asymptomatic, so I am 'fine', I can only tell I have AF by my pulse.
Hi John-boy-92I am sure a great number of people have undiagnosed af. I know a gentleman who went in to hospital for a leg operation and came out with a pacemaker and af which they found when doing tests.
Unfortunately af in some people is not an issue (or so it seems) until found out on routine checks at hospital.
Best regards
Flyer.
We made the mistake of volunteering for the “Our future health” study even though our appointment at the “clinic” in the Tesco car park was on our 40th wedding anniversary!! The practitioners were very nice but we learnt nothing new then or since and I even had a problem with the voucher they offered for taking part which was quite stressful and as we all know stress is not good for us!
There is a mention in the flyer with the results that it isn't a personal health check, but they may contact people at a future date. I would love to know if I have variants of the CYP2C19 enzyme that metabolises some important drugs, as I respond very quickly to some including SSRI that is now presecribed in place of diazapam.
Not sure about all that! I wasn’t expecting anything about my particular health conditions but I thought we’d hear something of any findings that had been made as a result of the data acquired from all the participants and what they intended to do with the findings.
Identifying the undiagnosed person
My AF history
Permanent AF
Vagal AF
AF
