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Invisible killer heart condition: Angina is not picked up by normal tests and may affect 500,000

Jeannie Edwards, 63, felt heart attack-like pain in her chest several times a week

Sharp, stabbing chest pains were something Jeannie Edwards had tolerated for decades.

The pains would come on several times a week, and although they matched the description of heart attack symptoms, because she was only in her late 30s when they started, Jeannie was told there was ‘nothing to worry about’.

As Jeannie, now 63, a human resources director from Twickenham, South-West London, recalls: ‘I didn’t feel a crushing chest pain but I did feel like my heart was being squeezed hard — and the pain would radiate down my left arm and up my neck.

‘I thought at the very least it must be angina. I was absolutely convinced that I was going to have a heart attack. But because I was slim and fit, I wasn’t an obvious candidate.’

Indeed, the first doctor she saw took one look at her slight build (at 5ft 3in, she weighs just 7st), noted her healthy, non-smoker lifestyle and said it was highly unlikely that anything was wrong with her heart.

Angina — pain from partially blocked arteries — was ruled out because the attacks occurred even when she was lying down (angina is associated with exertion on exercise).

‘The doctor listened to my heart and said it was normal and the pains were nothing to worry about so I wasn’t referred for any further investigations,’ says Jeannie. ‘I felt reassured at the time, but the pains continued — with sometimes three attacks a week, every week — so I began to worry again.’

When she was in her 40s, and living in the Far East, Jeannie, who is married to Cliff, 72, saw a number of doctors but none suggested any further action.

‘Some thought the pains might be stress-related, but while it was true that I had a really busy job, the attacks didn’t happen at stressful times, so that didn’t make sense,’ recalls Jeannie.

‘Another time, a doctor said the chest pains could be costochondritis — inflammation of the cartilage which joins the ribs to the breast bone. But from what I’d read, this usually goes away on its own after a couple of months.

‘Others called the attacks “pseudo-angina” — angina symptoms without a medical cause —and implied it was psychological or suggested I was looking for attention. This deterred me from seeing doctors about the chest pains and I didn’t insist on tests.’

But four years ago, back in the UK, Jeannie’s attacks were getting more frequent and more intense. This time, her doctor referred her to a private cardiologist.

The cardiologist suggested Jeannie have two investigations: an angiogram, a type of X-ray that uses a special dye and a camera to investigate blood flow in the arteries, and an MRI stress test scan.

This measures blood flow in the microvascular system — the network of tiny arteries and veins — when the heart is placed under stress using a drug called adenosine.

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‘The angiogram was as clear as a bell, but the cardiac MRI showed that my micro-circulation was not functioning as it should, and this was causing my chest pain,’ recalls Jeannie.

Jeannie was diagnosed with cardiac syndrome X, which causes intense chest pain similar to angina or a heart attack. It is due to problems in the tiniest blood vessels in the body and the endothelial cells that line these veins and arteries.

It’s a little known but surprisingly common problem. The findings of a recent U.S. study, published in the New England Journal Of Medicine involving 400,000 people who’d undergone angiograms for chest pain, suggested that more than 50 per cent did not have blocked arteries and therefore could have it.

Experts estimate if these figures were applied to the UK, between 500,000 and 700,000 people could have cardiac syndrome X yet not know it.

Around 90 per cent of those affected are women, mainly aged between 30 and 60. This is because their hormone levels are thought to play a role (the condition is more common in the perimenopause — the years leading up to the menopause — and beyond).

It seems oestrogen, the female sex hormone, has a protective effect on the cardiovascular system, although precisely how is not clear.

Cardiac syndrome X is linked to the microvascular circulation reacting abnormally to stress, both physical (such as exertion) and psychological.

The tiny blood vessels either go into spasm or fail to dilate, leading to a lack of blood flow and cramping pain in the heart muscle. In some cases, it may be down to a structural problem, with the patient having fewer capillaries or thickened capillary walls, explains Juan Carlos Kaski, a professor of cardiovascular science at St George’s, University of London.

He says that cardiac syndrome X, now more commonly known by doctors as microvascular angina, was originally thought to be a rare condition that affected only women. ‘Now we know it affects both sexes and is common, but cardiologists are slow at picking up on it,’ he says.

Emily McGrath, a senior cardiac nurse at the British Heart Foundation, says the problem is that it doesn’t show up on angiograms because the blood vessels affected are too small. This means diagnosis is delayed.

‘Microvascular angina occurs in tiny blood vessels less than half a millimetre across,’ says Emily McGrath. ‘This means it’s extremely difficult to detect using standard tests such as angiograms.’

Lack of diagnosis is a concern, adds Dr Robin Roberts, a cardiologist at the private Alexander House Medical Centre in London, who treated Jeannie.

‘Cardiac syndrome X is not a benign condition as was believed as recently as ten years ago, and is a red flag for a heart attack. Mortality rates are similar for cardiac syndrome X to those with chest pain due to blocked arteries. It needs to be taken seriously as it can cause a heart attack by cutting off blood supply to the heart in the same way a blocked artery can.’

But as Emily McGrath points out: ‘Research shows that patients with the condition are at risk of being admitted to hospital, and even experiencing a heart attack before being diagnosed.’

Indeed many women ‘get a poor deal’, adds Dr Roberts. ‘The knee-jerk response from doctors is to say they have nothing wrong with them. Patients are often passed from pillar to post, and the average time between onset of symptoms and a diagnosis is 12 to 15 years.’

Treatment for cardiac syndrome X involves lifestyle changes such as giving up smoking, taking exercise, reducing cholesterol, and prescribing angina drugs such as beta blockers to increase blood flow.

Hormone replacement therapy is also sometimes prescribed to treat the condition. But for some patients, the drugs either don’t work or, as with Jeannie, they are unable to take the medication.

In her case, this is because she has Sjogren’s syndrome, an autoimmune disease that destroys glands that produce tears and saliva and makes her sensitive to medication.

She underwent instead a lesser-known treatment called external counter pulsation (ECP). Here, pressure cuffs are attached around the calves, lower thighs and upper thighs and then rapidly inflated and deflated, increasing the volume and speed of blood flow.

This stimulates blood vessels — including the micro ones — to release nitric oxide, which in turn dilates them, increasing blood flow by around 30 per cent, says Dr Roberts.

He says it also stimulates the release of stem cells, called endothelial progenitor cells, which repair and regenerate the endothelial cells that line the blood vessels.

Each session lasts around an hour, and in that time the cuffs will inflate around 4,000 times in sync with the patient’s heart rhythm. A course of 35 treatments costs around £10,000 privately.

Despite being little known in Britain, ECP is used widely in the U.S. and there are more than 200 published papers in peer-reviewed journals on its use.

One study, published in the Scandinavian Cardiovascular Journal in 2015, involving patients with angina treated with ECP, found that 12 months after treatment they had sustained improvement in quality of life and exercise capacity, and their angina improved. The number of daily angina attacks per person dropped from 2.7 to 0.9.

American regulator, the Food and Drug Administration, approved ECP as a treatment for angina in 1995, and it is available at more than 1,000 centres there.

In 2013, the European Society of Cardiology recommended ECP should be considered for patients whose angina hasn’t responded to other treatments.

Under NICE guidelines published in 2011, however, ECP is not recommended for angina pain as standard treatments are seen as effective for most people and so far the studies have been small. Professor Kaski points out that only a small percentage of people with microvascular angina will benefit from the treatment.

Currently, ECP is available at two NHS hospitals, Bradford Royal Infirmary and Barnsley Hospital NHS Foundation Trust, and at Dr Roberts’s clinic and other private centres, but this may change with better evidence.

As Professor Juan Carlos Kaski explains: ‘The results from pilot studies are promising. What is needed now is a big, multi-centre, randomised controlled trial and we are applying for funding for this.’

Meanwhile, Jeannie has been pain-free since completing her four-week ECP treatment more than four years ago.

‘I’m convinced it put an end to my chest pain,’ she says.