Hidden illness

Hidden illness

Patrick, 49, had a plan if his test result was negative. He would swallow his blood-thinning pills and some diazepam, then run a hot bath, get in, and slice into his femoral artery. The blood-thinners would prevent clotting. “It wouldn’t have been a cry for help. I didn’t intend to fail,” he says.

Luckily the plan was never executed. The test result was positive and Patrick did have the illness he’d suspected. And the test? This last throw of the dice after which he would despair, which finally unlocked for him the mystery disease that had wrecked his life for the past ten years?

This test was one that Patrick alone, without help from the numerous consultants he had visited, had realised he needed. No doctor had managed to work out what had undermined his body for so long, clogging up his arteries and heart (hence those blood-thinners), weakening his bones, damaging his liver, sapping his energy, and worst of all, attacking his brain and mental health (hence the diazepam). He’d had countless interventions, stent insertions, medications for depression, counselling, advice to eat less and exercise more, and to change his thought patterns, and nothing helped. It was only his own internet research that led him to the truth.

Googling his symptoms flagged up an illness unknown to most people, Growth Hormone Deficiency, or GHD.

If GHD were diagnosed as it should be, we would all recognise it to be more common even than breast cancer, which is, sadly, familiar to everyone. It is extraordinary that it remains so little known about.

GHD happens when the pituitary gland stops working, whether because of head injury, a tumour or brain surgery. People coommonly associate growth hormone solely with children’s growth, but in adults it is essential too, for governing energy levels, cardiovascular and bone health, and mood.

Our charity, Christopher Lane Trust, was set up after our son’s suicide to help sufferers to obtain correct diagnostic testing, and we find many of our clients have either contemplated suicide, or attempted it, sometimes multiple times. They talk of feeling isolated and disbelieved, of having no hope of ever getting better. Patrick recalls that at his worst he was impossible to be around. “My moods would swing all over the place, sometimes changing dramatically from one hour to the next. I suffered from the following toxic psychological cocktail: apathy, depression, anxiety, irritability, memory problems, cognitive dysfunction and more. It was hell on earth.”

After he was diagnosed Patrick was given GH replacement injections. It took six weeks before he felt the first effects, but one day he found he could finish the washing-up ‘in one go’. He still tears up when he thinks of it. His energy returned, his mood improved, and he has since resumed his career as a professional musician and leads a near normal life. His health has been seriously compromised by ten years of neglect, but at least he no longer visualizes the razor and the hot bath.

If GHD is so rarely diagnosed, how can we tell how many cases really happen each year? Head injury is the key. Research has shown again and again, that growth hormone deficiency happens after around a fifth of all brain injuries. Based on this premise, the incidence is reckoned at about 50 cases for every 100,000 people as against 32 cases of breast cancer per 100,000 people last year.

We can only calculate the numbers of cases of GHD caused by head injury, not those arising from tumours, surgery and radiation, nor to GHD that is the result of unreported concussions, for example in sport. The total number must be even more catastrophic.

Secondly, although the incidence rate of breast cancer roughly matches the diagnosis rate, this is not so with GHD. According to NICE there are only ten diagnosed cases per 100,000 a year – a fifth of the reality.

Thirdly, time does not stand still. Each year more undiagnosed GHD sufferers swell the total, to the tune of 71,000 a time. The reservoir is filling. It has been estimated on BBC’s Inside Health programme that there are already over a million undiagnosed cases of hypopituitarism. These are people likely to have heart attacks, strokes, liver problems, osteoporosis and mental health issues. Some will take their own lives – the rate of suicide after brain injury is four times the norm.

The reason for GHD’s obscurity may lie in growth hormone’s dark history. Originally it could only be obtained from the pituitary glands of corpses, and it took 360 glands to treat one patient. Treatment was prohibitively costly, and only prescribed for children. Then too, tragic contamination with Creutzfeldt Jakob Disease meant some of these children died later from human ‘mad cow disease’. In 2003, after synthetic growth hormone became widely available, NICE authorised its use for adults. However, it was still expensive.

As research emerged unveiling the high risk after head injury and the huge numbers of potential sufferers, it is perhaps understandable that GHD became shrouded in secrecy. In fact, to this day, you will look in vain for ‘Growth Hormone Deficiency’ under ‘G’ in the NHS A-Z of medical conditions, or for ‘hypopituitarism’ under H. NICE’s head injury guideline has only just this month included hypopituitarism after 20 years of silence. Similarly, the National Strategy for the Prevention of Suicide does not mention the high suicide risk for brain injury survivors. The general enthusiasm for diagnosing people with ME, fibromyalgia, chronic fatigue syndrome and metabolic syndrome, anything rather than exploring the cause of their symptoms, continues unabated.

Our charity can testify to medics’ widespread refusal to test patients for GHD, and the spurious reasons they give.

The average annual cost of prescribing GH is a mere £966 a patient as listed on NHS England’s website, which is minuscule compared with the costs Patrick racked up during his ten years in the wilderness. The hospital emergencies, the operations, the consultations, the scans, the medications, the rehab sessions, the psychiatric assessments, the psychotherapy, the revolving-door GP visits – but it is worth mentioning that just one episode, his 16-day stay hospital with critical coronary artery disease, cost £10,407, which alone would pay for ten years of hormone treatment. Then there are his unemployment benefits, which he estimates to be around £12,000 for the 5 years he couldn’t work. Not to mention the £1.67 million his suicide would have cost our economy, according to Parliament’s Interim Report on Suicide Prevention, had he gone down the hot bath route. There is no reason to think Patrick is a one-off. There must be hundreds of thousands of men and women like him, all tying up NHS resources needlessly.

It might perhaps be justifiable to keep one group of sick people untreated if by doing so you were achieving health for a much larger group (starving mariners eating the cabin boy), but what is happening here? Here not only the cabin boy but the whole ship would be better off if he was spared. It may not matter to the policy-makers that the present secrecy is desperately deceitful, cruel and unethical, but they should at least exercise their financial common sense.

Sir Keir Starmer has voiced his intention of reducing suicides and heart disease. Looking in this direction would be a sensible start.