James was told his years of foot pain was ‘all in his head’. Now he’s broken 30 bones, had 16 operations and shrunk by 6.5in: How millions of men are living with an undiagnosed disease dismissed as ‘women’s issue’

Millions of men are living with undiagnosed bone disease, putting them at risk of life-threatening fractures, experts have warned. 

The condition, osteopenia, occurs when bones become brittle. Over time, this can lead to osteoporosis, a more advanced and severe version of the disease that can cause life-changing bone breaks.

Some 40 per cent of over-50s in Britain are estimated to have osteopenia. Most of these are women, because a reduction in oestrogen during the menopause can weaken bones.

But more men than ever are developing the disease, according to experts, and most don’t know they have it.

The Mail on Sunday has also learned that thousands of men who go on to develop more severe bone disease are being denied potentially life-changing drugs that are routinely offered to women.

Campaigners have labelled this unequal access a ‘scandal’, with experts calling on the health service to improve detection and treatment of osteopenia in men.

The trouble, says consultant rheumatologist and Ulster University professor David Armstrong, is that the condition is still seen as a ‘women’s issue’.

‘I often see men who are further down the line – having already had two or three fractures – before they get referred to me,’ he adds.

‘It’s disappointing to see men all the time and [hear them] say: “I wish I’d seen you five years ago.”

‘Many don’t know osteopenia can even affect them – and may be less proactive than women about asking for a scan. Or, even if they do go to the GP, it may be a slower process to be referred.

‘Even when the condition finally is picked up, the drugs available for men are less effective. When it comes to treating men, we’re one step behind.’

More than three million Britons have osteoporosis, where fragile bones sharply increase the chances of serious, even life-threatening fractures.

But prior to this, osteopenia develops. Unlike in its later stages, which can be managed only with medication, the condition can be reversed with lifestyle changes.

The problem is that only those who suffer a serious fracture are routinely scanned, meaning many remain at risk without realising.

Men are also less likely to seek routine medical help or preventive checks – meaning they can miss silent conditions such as osteopenia until serious damage is done.

And even if they do make it to their GPs, more than half of men with thinning bones are not diagnosed, according to the Royal Osteoporosis Society (ROS), often because their symptoms are blamed on age or arthritis. 

It’s a topic that Mail on Sunday columnist Dr Ellie Cannon discussed in these pages last week.

Due to bone thinning still widely being treated as a women’s problem, she wrote, men are often overlooked, with doctors assuming they are protected – or that brittle bones are simply an inevitable part of ageing.

Yet as many as one in five men over 50 will suffer a fracture due to osteoporosis. And men who break their hip are twice as likely to die after a year than women.

Dr Cannon asked men who had been diagnosed with osteopenia or osteoporosis to write in, and was inundated with emails and letters. 

James Simon, 48, endured years of foot pain – frequently being told it was ‘all in your head’ – before finally being diagnosed with severe osteoporosis aged 31.

When his feet were X-rayed, they were dotted with fresh and partially healed fractures. Since then, he’s broken 30 bones and had 16 operations – most of them linked to osteoporotic injuries.

‘They still don’t know why I developed it so young, but one ­theory is that it was due to a steroid medication I took for four years as a teenager,’ said James.

‘Luckily, I’m now on medication for the condition, but for years I was ignored. I’ve had to retire from my job as a police officer and have shrunk 6.5in. I wish I’d have known that I had it earlier as I would have been able to take some action to try and help prevent having so many fractures.’

Nick Grant, 64, says his osteopenia diagnosis – caused by issues with his body’s ability to regulate calcium – was ‘quietly dropped’ by medics after a hernia meant he was unable to take the first-line medication for the condition.

It wasn’t until 13 years later, when he fractured his hand in a fall and an X-ray revealed bones that ‘looked like Aero chocolate’, that he was finally properly treated for osteoporosis.

By this point, he said, he had lost more than 2in from his height. And, to add insult to injury, the ­letter he received informing him that he had the condition erroneously referred to him using female pronouns throughout.

Experts say that for many men, early detection of the condition could prevent later fractures.

Part of the issue is that, for women, osteopenia is typically triggered by the drop in oestrogen after the menopause, because the hormone helps keep bones strong.

As a result, GPs and women themselves tend to be more alert to the problem – with fractures sustained after menopause much more likely to be followed up with a bone density scan. In men, however, bone loss is more gradual and can go unnoticed for years.

Causes include low testosterone – the hormone helps keep bone-building cells active and slows the rate of bone loss; heavy drinking – which reduces the absorption of nutrients; and certain treatments, including for prostate cancer.

Steroid use, even just a three-month course, can also accelerate bone loss, research shows.

But family history is also important, says Professor Armstrong. ‘Whether it’s a sister, a mother or father who has been diagnosed with osteoporosis or osteopenia, having a member of the family with the disease – or a history of hip fractures – increases a man’s risk of it,’ he explained.

Knowing the risk factors for osteopenia – and that it can also affect men – is crucial to prevent further bone thinning, experts say.

‘In both men and women, it’s a silent disease,’ said Professor Hamish Simpson from the Academic Centre for Healthy Ageing at Queen Mary University of London. ‘You are unlikely to know you are suffering from bone thinning until you have a fracture, so ­prevention is key.’

For men who think they may be at higher risk, the first key step is advocating for further testing. The condition is diagnosed using a Dexa scan, which measures how much bone mineral – mainly calcium – you have compared with a healthy person in their 20s.

A score of zero is normal. Between -1 and -2.5 indicates osteopenia, while anything below -2.5 suggests osteoporosis. Scans aren’t automatically offered as patients age, so those worried about osteopenia should talk to their GP, advises the ROS.

The best way to do this is to use the ROS personal risk calculator, which can be found at thegreatbritishbonecheck.org.uk, and bring the results to your appointment, says Professor Simpson.

If bone damage is minor – or still within the osteopenia range – the condition can often be addressed with lifestyle changes such as quitting smoking and drinking, and exercising more.

‘Load-bearing exercises like skipping, jumping and running send small shocks to the bone with each step – which is good for stimulating bone formation,’ adds ­Professor Simpson.

Experts also recommend taking vitamin D supplements – which help the body absorb calcium – as well as calcium itself, if recommended by your GP. If bone thinning is more severe, however, medication may be necessary.

But experts warn men are even further disadvantaged at this step.

‘One of the biggest differences in osteoporosis care between men and women is that there are significantly fewer treatments available licensed for men than women,’ says Dr Peter Selby, a professor of metabolic bone disease at the ­University of Manchester.

‘Older drugs helped to stop bone loss, but the newer treatments are actually able to build bone density back up. Unfortunately, because they have only been tested on women, doctors in Britain can’t currently prescribe them for men. As a result, men are getting ­second-class treatment.’

These drugs, romosozumab and abaloparatide, are just as effective in men as in women, says Professor Armstrong. They are regularly prescribed for males privately as well as overseas.

Both work by inhibiting a protein that hinders bone formation, whilst stimulating bone reformation. They allow bones to rebuild and are ­usually followed up by a round of older treatments – such as ­zoledronic acid – which prevent further bone loss.

A 2020 study found that post-menopausal women with osteoporosis who were given romosozumab had a 73 per cent lower chance of developing a new spinal fracture after a year, compared with females who received a placebo.

Trials of abaloparatide showed an 84 per cent lower risk of new vertebral fractures and 43 per cent lower risk of non-vertebral fractures than a placebo. Teripatide, a less effective treatment, is available for men in the UK. But experts say patients should have access to the best drugs around – particularly as so many show signs of advanced bone thinning disease by the time it’s picked up.

‘In the past I’ve had a brother and sister – both with the same level of bone decay and the same family history of bone disease – come to me for treatment, and the sister gets the drug and the brother doesn’t,’ said Professor Armstrong.

Experts and osteoporosis campaigners including Ruth Sunderland [see right], are calling for more awareness among GPs and men about the risks of bone thinning disease.

But some men, like Steven Rew, 70, do have NHS success stories. The Essex-based retiree was immediately sent for a Dexa scan by his GP after he noticed he had begun to walk at a slight angle.

‘It showed I had a spinal fracture and mild osteoporosis – but I had no idea what it was,’ said Steven.

But his doctors sprung into action. After years of infusions and calcium supplements, Steven’s bone density has improved by 80 per cent – reducing the condition back to osteopenia.

‘Being diagnosed relatively early, I was extremely lucky,’ he added. ‘But there are many more men who aren’t as fortunate.