First signs and symptoms of atrial fibrillation
Atrial fibrillation (AF) is a heart condition in which the heart rate is irregular and the pulse rate is faster than normal. People may experience...
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”.
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.
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.
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)
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.
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.
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.)
Atrial fibrillation (AF) is a heart condition in which the heart rate is irregular and the pulse rate is faster than normal. People may experience...
With little public awareness of atrial fibrillation (AF), few people had any knowledge of the condition when diagnosed. As Elisabeth X said, "I didn't know...