Diagnosing atrial fibrillation

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 heartbeat) 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), 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 200 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.

Gender Male

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Mary’s AF was diagnosed after she was taken to hospital with palpitations.

Age at interview 84

Gender Female

Age at diagnosis 84

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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

Gender Male

Age at diagnosis 58

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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.

Age at interview 59

Gender Male

Age at diagnosis 57

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Vera’s AF was picked up by a practice nurse during a routine blood pressure check.

Age at interview 75

Gender Female

Age at diagnosis 74

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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.

Age at interview 61

Gender Male

Age at diagnosis 57

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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

Gender Male

Age at diagnosis 52

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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 8 or 9 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.

Age at interview 64

Gender Female

Age at diagnosis 55

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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

Gender Female

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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 2 months after first experiencing symptoms, then had to wait almost 8 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.

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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.

Age at interview 64

Gender Male

Age at diagnosis 62

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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

Gender Female

Age at diagnosis 54

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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

Gender Female

Age at diagnosis 40

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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 for 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.)