Letter to Peter Kosminsky

17 July 2022

Another Undeclared War

Dear Peter Kosminsky

I have read that your films expose dangers and ‘undeclared wars’ that the public is unaware of.

I’d like you to consider making a film about Tom

Tom

Tom* is 47 and comes from Northern Ireland. When he was 12 his father bought his 16-year-old brother a fast, flashy car. The two boys went for a spin and had a terrible accident, in which Tom’s 16-year-old brother died and Tom himself received a severe head injury. During Tom’s time in hospital, he was never told that a serious head injury has a one in four chance of damaging the pituitary gland – damage which may cause physical weakness, obesity, fatigue, depression, and in adulthood an inability to perform sexually.

Tom suffered all these effects except the last. (He did manage to father two sons with the aid of Viagra.) After three decades during which his fatigue prevented him from working, his depression made him a frequent mental health patient, and he made multiple suicide attempts, he eventually suspected from his own googling that he might have growth hormone deficiency, which is the most common effect of pituitary damage.

He asked advice from three distinguished endocrinologists, one from Dublin, two from Belfast, who all told him that hypopituitarism was out of the question, and that he should eat less, exercise more, and go back to the psychiatrists. At this point he contacted our charity, Christopher Lane Trust, and we offered to pay for private testing for growth hormone deficiency (GHD) at the third endocrinologist’s clinic. Very surprisingly, (because what clinic ever rejects custom?) this endocrinologist refused. We suspected at this point that he was refusing not because he thought Tom didn’t have GHD, but because he thought he did. We suspected it all the more when Tom was tested at our expense in England, at one of the few hospitals that will not obstruct patients who wish to be tested, and was found to be severely deficient. 

What is amazing is that even after all these years of deprivation, once he was given replacement growth hormone, his mood and energy were completely transformed and he is a new man – no longer a pessimist who always expected the worst but confident and happy, with a sense of humour. He has lost weight, gained fitness, and is contemplating looking for a job. But he is angry about how 35 years of his life were blighted.

Why did those endocrinologists send him away, in two cases quite unpleasantly?

What I believe

After 14 years of campaigning for greater recognition of pituitary illnesses I am convinced that there is a deliberate suppression of public information, which leads to huge human misery and an unacceptable number of wasted lives. The number of undiagnosed hypopituitary patients in the UK has been estimated at a million [1]. In our charity’s experience, a significant proportion of these patients contemplate suicide and I am sure that many do kill themselves[2]. The cost of treating all these people, especially with growth hormone, which most of them need, would be prohibitive, especially as the treatment is lifelong. I believe this is why an elaborate web of lies has been spun to refuse people proper testing, and why every few years a new label is invented (‘ME’, ‘Chronic Fatigue Syndrome’, ‘Fibromyalgia’ ‘Metabolic Syndrome’ and so on) to categorise them. Tom was given the Chronic Fatigue Syndrome label.

How our charity began

In 2008, at 31, our son put on a helium mask, wrote a lot of suicide emails, and died. After his death, during the painful task of going through his things, we discovered from letters between him and his girlfriend that he’d been impotent. She’d left him 5 years earlier but when we asked her, she confirmed this.

My sister was sure that the serious head injury he’d had when he was 7 must be connected, and googled. This is how she found out about the high risk of pituitary damage after head injury.

The patients I met

This started me off on a long quest to raise medical and public awareness and to advise people with suspected pituitary damage about the tests they should push for, and the treatment they should get.

Along the way I heard about one woman who was ill for 28 years before she was diagnosed with hypopituitarism (Jill, I am in touch with her). Her friend, Christine Wrightson, undiagnosed for six years, now deceased. Paul, undiagnosed for nine years, James, five years, and so on. Many more of the same. What they had in common, apart from feeling very ill, having suicidal thoughts and making suicide attempts, was that they had tremendous perseverance, plus a certain scepticism that they might not be being told the whole story.

Why these delayed diagnoses?

I said that public information had been suppressed. I have experienced three major examples.

NICE

The NICE head injury guideline – the guidance that all the medics go by - is still silent about the high risk of hypopituitarism after all kinds of injury, even concussion. (They have now promised to include it, 13 years after I first raised it with them, but the date keeps getting pushed back).

SUICIDE STRATEGY

The risk of suicide after head injury is four times the norm, and the National Suicide Strategy should highlight this because GPs need to be alerted that these people are vulnerable. However, it does not. I have communicated with Sir Louis Appleby several times and his excuses are flimsy in the extreme.

HEART CHARITIES

One of the effects of GHD is that the cardiovascular system is affected. Our charity was approached by Gareth Hamill, who had a heart attack at 39 and wanted to know why. None of the medical experts suggested GHD could be an underlying cause. It took Gareth ten years of searching, during which he had no quality of life and was considering suicide, before at last he was tested by his own request – after trying 5 major hospitals - and was found to be severely growth hormone deficient. If the link between GHD and heart trouble had been available to heart patients he would have been spared those ten years. Heart websites should include GHD in their lists of causes, and Heart UK have done so recently, and so has the British Heart Foundation, but only after we had copied in a number of their staff and Trustees, and in Heart UK’s case, made a veiled threat about contacting the media.

There are many other organisations that preserve a similar silence. For example the NHS website, in its A-Z of ailments, has no entry under G and H for GHD or hypopituitarism. It took a year of persistent correspondence before Headway, the head injury charity, would include a page on its website. I could go on.

THE MEDICAL FOB-OFFS

People who suspect they have an endocrine disorder are denied tests for growth hormone on grounds that are not supported by research. They are told that if their IGF-1 levels are normal, this excludes GHD. They are told that if their other pituitary hormones are in range, then they can’t have GHD. They are told that if their pituitary MRI looks normal they can’t have GHD. All these statements can easily be disproved by a brief session of googling. Medics also rely on a test for cortisol deficiency that has been demonstrated to miss 2 cases in every 5, and I suspect they do this because the proper test will also show up growth hormone deficiency, which they don’t want to find.  The Society for Endocrinology describes the discredited cortisol test in their patient information leaflet as ‘very reliable’.

THE FOLLY OF THIS APPROACH

Almost everyone who has approached our charity has been unable to work. Nearly all of them have had thoughts of suicide. Both unemployment and suicide are extremely expensive to our society. Yet nobody does the sums to see whether it is really cheaper to condemn a million people to a half-life on benefits, and a high rate of suicide, than to make them better and get them back to work.

Conclusion

I have also kept this email as short as I can, not wanting to weigh it down with references, but if you ask me I can supply evidence for every assertion I have made. Please will you make a documentary or fictional film about this topic. It badly, badly needs to be brought into the light.

Yours sincerely

 

 

Joanna Lane BA Hons (Oxon)

*Not his real name

[1] Fernandez-Rodriguez E et al, Hypopituitarism following traumatic brain injury: determining factors for diagnosis, Front Endocrinol 25 August 2011 doi: 10.3389/fendo.2011.00025 http://www.frontiersin.org/Pituitary_Endocrinology/10.3389/fendo.2011.00025/full The incidence of hypopituitarism following TBI is around 50 patients per 100,000 individuals per year, which results in a high number of patients affected.

Also consultant endocrinologist estimated a million undiagnosed in the UK today on the BBC Inside Health programme April 9th http://www.bbc.co.uk/podcasts/series/medmatters  transcript http://www.bbc.co.uk/programmes/b01rr37c

[2] The suicide rate after head injury is four times the norm, and even after concussion it is doubled. Teasdale TW, Engberg AW, Suicide after traumatic brain injury: a population study, J Neurol Neurosurg, Psychiatry 2001) http://jnnp.bmj.com/content/71/4/436.full

The increased suicide rate after head injury plus our charity’s experience of suicidal ideation among clients certainly lends credence to a direct link between pituitary damage and suicide.

 

 

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