Beth thought her cold hands were just a quirk or harmless Raynaud’s… but they were actually the first sign of an autoimmune condition that can be life-threatening. So many cases are being missed

As a child, Beth Smith thought of her cold hands as a quirk. She could take things out of the microwave without a tea towel and clutch a cup of hot tea without using the handle.

‘My family all had cold hands – we said we had asbestos fingers,’ says Beth, who is from Essex.

But as she got older, her cold hands grew more concerning. Around the age of ten they started to discolour – turning white seemingly at whim. She says: ‘The GP flippantly told me to keep wrapped up and warm. But my hands gradually got worse. They would become pale and bloodless if I was ill or even stressed.’

Beth was later told she likely had Raynaud’s – a common condition in which small blood vessels in the fingers and toes temporarily spasm, leading to reduced blood flow and painfully cold hands. The fingers often turn white or blue due to a lack of circulation.

Affecting about one in six Britons, Raynaud’s is usually harmless and is generally managed by wearing gloves, thick socks and layers, to avoid sudden temperature changes.

But for some, the condition can be one of the first – and sometimes only – signs of a more serious health issue. About a million people in the UK have what is known as secondary Raynaud’s, where the condition is caused by another underlying disease.

For this group, Raynaud’s symptoms can be particularly severe – sometimes causing lasting tissue and circulatory damage – and can be resolved only by treating the primary disease.

But experts warn that many with secondary Raynaud’s are being missed by doctors – with devastating consequences.

Samir Patel, a consultant rheumatologist at King’s College London, says: ‘Because cold fingers and toes are quite common, people don’t appreciate what it sometimes signifies.

‘In many people there’s no clear cause for it and it’s usually not severe. But, for others, it can be the first presenting feature of an autoimmune condition.’

For Beth, it took nearly a decade to get to the bottom of her Raynaud’s symptoms. By 25, they were ‘totally out of control’.

She explains: ‘I was getting blue and grey hands and feet – and the discolouration was starting to travel up to my elbows and knees. Doctors had tried different medications and nothing worked. I was scared because I had been told that not having a pulse in my hands for an extended period could cause tissue damage so severe that I could lose a limb.

‘Then, when I was 26, I was tested for and diagnosed with an autoimmune condition that had been causing my symptoms all these years.’

Beth had scleroderma – a rare disease that causes the body to produce too much collagen, leading to hard, thickened skin and, in severe cases, even scarring within internal organs.

Some types can lead to severe and life-threatening problems.

Many of the condition’s symptoms mimic other, more common issues – such as patches of tight or sore skin, acid reflux or general fatigue – making diagnosis difficult. But in 95 per cent of cases, the first sign of scleroderma, often appearing years before other symptoms, is Raynaud’s.

In these cases it is caused by collagen building up in the blood vessels in the fingers and toes – which then cuts off blood flow completely when these vessels further narrow due to cold weather or stress.

Once diagnosed the condition can be treated with blood pressure drugs that help dilate blood vessels, as well as with immune suppressants that help slow the skin thickening and reduce internal organ damage.

The earlier treatment is begun, the more effective it can be at managing symptoms and preventing permanent tissue damage.

There are several factors that differentiate secondary Raynaud’s. ‘The red flags are people who develop it out of the blue, at an older age, and who are male,’ says Louise Parker, founder and director of The Raynaud’s Clinic in north-west London. ‘Raynaud’s is a predominantly female condition – so men developing it should be a cause for concern.’

Every six weeks Beth, 33, has drug infusions over a five-day cycle that helps open up her blood vessels to keep her scleroderma at bay – and this has massively helped with her Raynaud’s.

But she wishes she had been seen earlier by doctors who properly understood it and were able to recognise the signs of her underlying condition.

‘I was always conditioned to believe that it was my own fault my Raynaud’s was bad, because I didn’t dress warmly enough,’ she says. ‘But wearing gloves and socks and trousers never actually helped me – they actually cut off my circulation more.

‘I think that if I was put on the right medication sooner, I probably would have tolerated it better.’