We asked people we interviewed to talk about their journey from symptoms to diagnosis. For some, getting a diagnosis of atrial fibrillation (AF) was straightforward when they saw their doctor after feeling unwell, experiencing palpitations (a noticeably rapid, strong or irregular heart beat) or noticing a fast pulse rate. They had their AF confirmed either by an electrocardiogram (ECG), after wearing a 24-hour Holter monitor (a portable machine that continuously records the heart's rhythms), or after blood tests failed to find possible underlying causes for symptoms, or when they were admitted to hospital. Jo’s GP diagnosed ‘a very, very fast, irregular pulse rate’ and did an ECG to confirm his diagnosis before sending her to hospital. By then her pulse rate had increased to two hundred beats per minute. Maggie’s AF was confirmed after wearing a Holter monitor which showed her heart ‘jumping all over the place’.
Dr Tim Holt explains how an ECG can detect an irregular heartbeat.
Dr Tim Holt explains how an ECG can detect an irregular heartbeat.
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An ECG is a device which detects electrical impulses from the heart, so the person has electrical leads attached to them on the chest, over to the left side of the chest and on their arms and leg and this detects the pattern of impulses coming from the heart, so it produces a trace and, where each heartbeat is recorded as a disruption to the baseline and this gives a very useful way of detecting the irregularity in the heart rate.
Mary’s AF was diagnosed after she was taken to hospital with palpitations.
Mary’s AF was diagnosed after she was taken to hospital with palpitations.
Age at interview: 84
Sex: Female
Age at diagnosis: 84
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So anyway, last May, June I couldn’t sleep one night. I got up and must have eaten a few biscuits thinking that they might send me to sleep and when I got back to bed about three o’clock in the morning, I had these palpitations started and they went on and on and on. I couldn’t get rid of it. I didn’t stand on my head mind you, but I’ve given up lately. So seven o’clock in the morning, I still had it. I was a bit fed up with it and I thought, oh, I should just, usually I ignore when I have these palpitations but it didn’t last that long. So I rang up NHS Direct and I talked to the nurse. “Right,” She said, “I’m sending an ambulance round.” And I couldn’t believe it. I said, “Is it necessary?” “I’m sending an ambulance.” So seemed that my blood pressure was high then took my, they must have given me an ECG, I don’t know, by these two chaps and they said, “We’re taking you in.” And I thought, “This is, you know.” I mean I’ve had these palpitations so many times and survived, why do they? All this fuss. Took me in. Straight in examination room. I was absolutely flabbergasted because I don’t, didn’t feel like, they just get this sort of heart beating fast. So they said it was atrial fibrillation. That’s when I was diagnosed.
George Y first experienced AF in bed one evening. The next day he admitted himself to A&E where he was diagnosed with AF.
George Y first experienced AF in bed one evening. The next day he admitted himself to A&E where he was diagnosed with AF.
Age at interview: 66
Sex: Male
Age at diagnosis: 58
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Went home, normal afternoon, normal evening, normal night and went to bed, just the normal way. But once I put my head on the pillow, I wasn’t well. There was a complete different feeling within my body. I was a complete different person. An unexplainable event was happening and I didn’t know what it was. Spoke to my wife, weren’t sure what was wrong, all I could feel was, I don’t know how you would describe it, an inner an inner happening that you had no control over, that was, there was there was no pain, there was no headache, there was nothing like that. But this was just a suddenness and it was really as I rested my head on the pillow. Beforehand great, once that happened, bang.
So we waited all night. Didn’t sleep much, don’t think we slept at all but we maybe dozed in and out for fifteen minutes. Saturday morning we decided that I wasn’t feeling that well. I took my breakfast and then decided that I’d go to my local hospital. So we went down and I admitted myself to A and E and was taken in, and they put the monitor on me and the monitor was clicking away and then it would go [beeeeeeep] and everybody would look and would rush and if I did that, lifted my arm or anything it was [beeeeeeep] and they had they then sent for a consultant. The hospital was a small hospital, which has since closed. The consultant was not on duty and had to come in to see me, but he diagnosed, I would have been in the hospital about nine, half nineish a.m., and the consultant would have come at approximately one, twelve to one. And within fifteen minutes he was able to diagnose that I had this thing that I never heard of before, AF, atrial fibrillation.
AF was sometimes discovered by chance when people presented with other unrelated health concerns. Dr Tim Holt has diagnosed patients with AF after discovering an irregular heartbeat while checking their blood pressure or by listening to their heart ‘even when the person has come complaining of something totally different’. Roger had his AF discovered as part of a health check at work. Geoff developed irritable bowel syndrome (IBS) as a result of food poisoning, which he thinks may have triggered his AF. It was during gastrointestinal investigations that it was discovered he had AF.
Brendan suspected that something was wrong for ‘a very long time’. He was not diagnosed until his doctor noticed an irregular heartbeat when taking his blood pressure.
Brendan suspected that something was wrong for ‘a very long time’. He was not diagnosed until his doctor noticed an irregular heartbeat when taking his blood pressure.
Age at interview: 59
Sex: Male
Age at diagnosis: 57
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I actually only discovered that I had AF about a year ago and that was really because I was attending the GP as a result of what I thought was high blood pressure. And in taking my blood pressure he noted that I had a very irregular heartbeat, and then he did an ECG himself and then referred me to hospital to have an ECG. And that’s basically how I found out about it. I suspect, however, I mean I know, however, that I’ve, you know, that there was always something sort of odd. I’ve known that for years and years. I suspect I’ve probably had AF for a very long time. I’m, noted, you know, I would I was aware, for example, that my own heartbeat would be irregular on occasions but I always assumed that a, if it was serious enough, my GP would pick it up.
Vera’s AF was picked up by a practice nurse during a routine blood pressure check.
Vera’s AF was picked up by a practice nurse during a routine blood pressure check.
Age at interview: 75
Sex: Female
Age at diagnosis: 74
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I had to go for a no, it was a six monthly blood check blood pressure check, and I had a different practice nurse to the one I usually do, and she took it two or three times and it was it sort of varied every time and so she said, “I’ll take it once more but I really think we ought to do an ECG.” So I said, “Okay.” So she made me an appointment for the next day. That was at the end of January this year. And I had this appointment and had the ECG and when she’d taken it, it was a different nurse, and she looked at it and she went straight out of the room and I thought, “Oh, something must be wrong.” And she went to find my doctor. If she’d said to me, “I need to tell your doctor,” I could have said to her there and then, “Oh, I’ve got an appointment to see him this afternoon anyway.” So I did. I went back in the afternoon and he said, “I have to tell you, you’ve got atrial fibrillation.” And I’d no idea what that was, so he described it and he gave me, he also printed out about six pages of information about it, which I found very interesting.
In some cases, diagnosis and treatment were delayed when people ignored symptoms believing there was nothing to worry about, or when they failed to accept their doctor’s opinion.
Keith ignored his symptoms and hoped they would go away. It was not until his GP checked Keith’s pulse during a regular check-up that his AF was diagnosed.
Keith ignored his symptoms and hoped they would go away. It was not until his GP checked Keith’s pulse during a regular check-up that his AF was diagnosed.
Age at interview: 61
Sex: Male
Age at diagnosis: 57
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The frequency of the attacks increased for some reason, I’m not sure when. I’d mainly have them after a meal, sitting down after a meal and I’d get this irregular heartbeat just for a matter of seconds. But the frequency increased and so did the length of the length of the attacks and I suppose this went on for over a year or so and a bit like an ostrich, I put my head in the sand and didn’t want to do anything about it. I just hoped it would go away really but it didn’t. I still didn’t do anything about it even though the attacks were becoming more frequent and should have done I suppose. But it just happened that I was going to a doctors, to my doctors for a check-up following an operation on my knee and I just happened to have an attack when the doctor was taking my pulse. And he sort of raised his eyebrows and said, “What’s going on here then and how long have you had this?” And then it was diagnosed, after a whole series of tests on the strength of my heart, which was perfectly healthy apparently, apart from the fact that I’d had atrial fibrillation and was it was prone to irregular heartbeat.
Although Richard was first diagnosed with AF as an expat working overseas, he didn’t trust the doctor’s diagnosis or take the prescribed medication.
Although Richard was first diagnosed with AF as an expat working overseas, he didn’t trust the doctor’s diagnosis or take the prescribed medication.
Age at interview: 56
Sex: Male
Age at diagnosis: 52
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I went to see a local doctor, can’t remember why, I didn’t feel well or something and he said I had an irregular heartbeat all the way back then and I remember that and didn’t, you know, didn’t think anything of it. And he prescribed a whole bunch of drugs that I knew nothing about and he was a local doctor and I wasn’t all that comfortable with that so I actually went to see one of the other oil companies, had their own ex-pat doctors, so I went to see him and he checked me over and said, “There’s nothing wrong with you and it’s just as well you didn’t take those pills.” Because he said I had a, which I do have, quite low blood pressure, well, I do have low blood pressure so a lot of these pills would lower it further.
And he said, I remember him vividly saying that if I’d have taken these I probably would have keeled over because it would have been so low. But I suspect that that first doctor was right because he did do an ECG and he showed me the stuff but I just wasn’t very confident of the technique and everything because the things kept falling off, I remember, and I was thinking, “Well, I, you know.” I wasn’t about to accept anything so serious.
Some people thought that their AF may have in fact started before the event which led to their diagnosis. Anne thought palpitations were a normal part of ageing and so did not mention it to her GP for years. Others described episodes of palpitations, breathlessness and dizzy spells that were either ignored or misdiagnosed. Bob felt resentful that he had gone through eight or nine years of misdiagnosis. He was told his symptoms were due to stress and digestive issues. Treated for many years for a hiatus hernia, Mary recalled having AF-type symptoms while shopping and driving to the airport before finally being diagnosed after experiencing palpitations which ‘went on and on and on’ after eating biscuits at 3am. Nuala, who had mitral valve disease, believes she was ‘probably in and out of periods of AF for years but wasn’t aware of it’. Diagnosed with angina ten years before, Janet wondered if in fact she had had AF all along. (For more see ‘
First signs and symptoms of atrial fibrillation’)
Dot had symptoms for years before getting a diagnosis.
Dot had symptoms for years before getting a diagnosis.
Age at interview: 64
Sex: Female
Age at diagnosis: 55
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I think, like many people who have AF, I was rather slow to realise that something was happening and I got it, I think, about ten years ago. And I was having it quite a lot but I didn’t, I just didn’t realise that I ought to think about it. So I can remember coming back from Chicago on a plane and realising that my heart was beating irregularly and thinking, “Oh, my heart is not beating right. If I go to sleep, maybe it’ll be alright when I woke up.” And it was, and then I forgot that my heart hadn’t been beating very well. And I think this was happening quite a lot, and I was clammy a lot of the time but I didn’t really think about it. I think probably I was feeling rather poorly but again, you don’t really realise it, and it kind of precipitated one day when I was sitting in this very office, where I was having a meeting with somebody and I just couldn’t think. And I realised that I felt very, very poorly and that my heart was beating in a rather strange way. And so I think it was perhaps some months after it had started and so I have a colleague who’s a clinician so I shot upstairs and said, “I don’t think I feel very well.” And I my ex-partner had had a lot of heart trouble, and I realised that I felt just like he had looked. So anyway, the clinician took my pulse and said, “You’ve got AF.”
James’ wife, Jenny, had heard his heart beating irregularly a few weeks before he had a stroke, but they dismissed it. They now realise it was a symptom of AF.
James’ wife, Jenny, had heard his heart beating irregularly a few weeks before he had a stroke, but they dismissed it. They now realise it was a symptom of AF.
Age at interview: 55
Sex: Female
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About six weeks before, we were upstairs laying in bed watching TV, and I put my head on his chest, and as I did it, oh God, it was so uncanny, I said, “God.” I went, I said, “Your heart is all over the place!” Instead of tick tock tick tock it was bom bah bom, bah bah bah bom, and gaps in it. I just went, “Your heart is all over the place.” And I laughed and he laughed and we carried on watching TV, and we didn’t do anything about it. I’ve never heard of AF and, of course, when we got to A and E and they said, “Has your husband got a heart complaint?” And I said, “No.” And then I went, “Well, actually, a few weeks back I did happen by pure fluke, that his heartbeat was irregular.”
In some cases, problems getting appointments and ECGs which ‘didn’t really show anything’ caused delays in getting a diagnosis. Some people reported delays in the referrals system and long periods of uncertainty before a final diagnosis of AF was made. Dave, who saw his GP two months after first experiencing symptoms then had to wait almost eight months before seeing a heart consultant after his GP ‘forgot to send the [referral] letter off’, and an outpatient appointment for an ECG was cancelled because of the ‘flu epidemic.
The failure of ECG monitoring to coincide with an episode of palpitations meant that some people could experience recurrent palpitations without detection.
Dr Tim Holt explains why AF does not always show up on an ECG.
Dr Tim Holt explains why AF does not always show up on an ECG.
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It doesn’t always show up in the sense that the atrial fibrillation can sometimes be coming and going. So a person who’s got atrial fibrillation but it’s coming and going and is not there all the time might have an ECG done at the time when it’s not there and that’s a real problem because the person still has a problem, even if they have no symptoms and they have only intermittent AF, they are still at high risk of having a stroke. So this is why it’s very important, if atrial fibrillation is suspected, not to rely simply on one ECG because it might have missed it.
So what would you do with people like that?
Well, if the suspicion of atrial fibrillation is significant, then such a person should be referred to a specialist to have what’s called a Holter monitor put on. Sometimes these are available in GP practices as well. The device is attached to the patient and they wear it usually for forty eight hours, some devices last longer than that, and it gives a much more, a much longer tracing which is much more likely to pick it up if the problem is just coming and going on and off.
Freda, a woman with paroxysmal AF (AF which comes and goes), found diagnosis difficult to achieve as she could not produce AF ‘on demand’ when having an ECG. Anne questioned why AF needed to be registered on an ECG machine when the symptoms she described to her doctor so closely matched a diagnosis of AF. In some cases, diagnosis was only confirmed after a major episode.
Despite Chris Y experiencing symptoms for a decade, ECGs and an ultrasound of his heart came back clear. It was not until after he had a TIA (minor stoke) that he was diagnosed.
Despite Chris Y experiencing symptoms for a decade, ECGs and an ultrasound of his heart came back clear. It was not until after he had a TIA (minor stoke) that he was diagnosed.
Age at interview: 64
Sex: Male
Age at diagnosis: 62
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I sort of thought, “Well, you know, maybe it’s just me being a bit paranoid and maybe, you know, if it gets any worse or something I’ll do something about it.” Which is what I did in 2005, and it did get worse and they did, I don’t know if I mentioned it, but they did actually give me this recording device again, and again, the time that I had it, you know, [laughs] it didn’t work because I didn’t have any AF while I had it.
And it wasn’t until I had the, after I’d had the TIA and I was I was on aspirin and I had that headache, and I went into A and E, that was the first time they’d actually got a recording of it. So it had just been, you know, sort of bad luck I suppose in some ways.
Marianne has paroxysmal AF with symptoms that come and go. This made diagnosis difficult and it took some years before her condition was picked up.
Marianne has paroxysmal AF with symptoms that come and go. This made diagnosis difficult and it took some years before her condition was picked up.
Age at interview: 72
Sex: Female
Age at diagnosis: 54
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About twenty years ago, I kept getting rather strange palpitations and feeling faint and I didn’t know why. At the time, I was living in France but I came over here and saw my GP, who sent me to a cardiologist, who said, “Nothing wrong with your heart. You seem to be perfectly alright. Can’t find anything. Maybe just some, you know, weird thing.” So I thought, “Oh well, that’s it. There doesn’t seem to be any real cause for this.” And then a few years later my husband died and it was an immense shock. I was here and he was in France at the time so I went over there to supervise everything and clear things out and all that. And I suddenly felt terrible. I felt really faint and dreadful. Everybody thought, I think they thought I was rather, putting it on. I said, “I’ve got to just lie down.” So I laid down for a while and felt a bit better, but I still felt very strange. When I got back here I felt better, but a friend of mine said, “You’ve just got to go and go to the hospital in London.”
So I went because I felt palpitations again and at the hospital they fast tracked me straight through, which was very surprising. Straight from A and E and they stuck tubes down my throat and in my arm and everything else. I was quite calm, actually. I read a book I remember. And they said, “Oh you’ve got something called atrial fibrillation but it’s paroxysmal, and that’s probably why they didn’t pick it up before because, when they were monitoring you, you were in sinus rhythm [normal heart rhythm] and it didn’t show.” So that was all a bit traumatic.
It was not until she was admitted to hospital after a suspected heart attack at work that Jeni’s AF was finally recorded on ECG.
It was not until she was admitted to hospital after a suspected heart attack at work that Jeni’s AF was finally recorded on ECG.
Age at interview: 41
Sex: Female
Age at diagnosis: 40
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I had beginning of August two thousand and eleven I had a twenty four hour ECG, which didn’t really show anything. So I was just put on the back burner. My GP and the cardiologist said, “Well, next time you have an attack make sure you get to a hospital because we need to get it recorded so we can see if there’s an issue.”
I was in the cardiac unit of the A and E so I had specialist cardiac nurses with me. One who said, “Right. Okay. This is what we believe has happened.” It was then that they decided that I had arrhythmia and they showed me, the good news was, they’d caught it on the ECG so you could see. So that was excellent news. My husband then arrived and they thought it was very strange that we were both extremely happy. It was like, “Why are you so happy?” “We’ve finally caught the issue on an ECG. We’ve been trying to do this for a number of years.”
Some people expressed frustration at being fobbed off by their doctor or given false reassurance that they were OK. Freda was told by her GP that ‘everyone gets palpitations’ and had to go back four times before he suggested she see another GP. Ginny, who had previously had an ablation for atrial flutter, was told by her GP after feeling light-headed: ‘You’re fine – don’t worry about that – it’s perhaps just because you were looking up’. When Eileen’s GP sent her to A&E in an ambulance after suspecting AF, she was told it was her age, that ‘it probably would never happen again’, and sent home. (For more see ‘
Negative experiences of health care for atrial fibrillation’)
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