The National Institute for Health and Clinical Excellence (NICE) is currently inviting comments on its draft updated head injury guideline, which must be received by 4^th October. Time is short for urging a change that may make a crucial difference to head injury patients’ recovery.

There is a large body of research establishing that 20-30% of head injuries result in damage to the pituitary gland, with effects that may include infertility, loss of libido, depression, chronic fatigue and obesity [1].

The number of undiagnosed patients suffering from post-traumatic hypopituitarism in the UK was recently estimated at between 500,000 and a million [2]. This number is being augmented every year by approximately 30,000.

At present head injury patients are not routinely screened for this complication, unless they are in the army. Nor are they warned in NICE’s sample hospital discharge advice that this condition may appear at any time after head injury, even decades into the future [3]. Clearly they have a right to this information, especially since the condition can be effectively treated with hormone replacement.[4]

NICE has conceded that this is a grave problem. A spokesman wrote in June 2009: “I am not denying the seriousness of this condition, nor the scope for a disastrous outcome if not recognised.” http://www.headinjuryhypo.org.uk/html/nice_appendices.html (Appendix 2)

At present the only safeguard for the patient is to be warned. I therefore urge you to sign the following petition:

We ask you to bear in mind the high prevalence of post-traumatic hypopituitarism, currently estimated to be between 500,000 and a million*, and to strengthen the measures in place to protect and fully inform patients of this condition.   Specifically we ask you to amend the ‘Long Term Problems’ paragraph in Appendices 0.6.1, 0.6.2 and 0.6.3 to include the words:

Some patients may find, even several years after their injury, that they develop hormonal problems, which could include sexual dysfunction, infertility, weight problems, depression or chronic fatigue. If any of these things happen, do not worry, but ask your GP to refer you to an endocrinologist who may be able to arrange effective treatment.

REFERENCES

[1] Schneider HJ et al, Hypothalamopituitary Dysfunction Following Traumatic Brain Injury and Aneurysmal Subarachnoid Haemorrhage: A Systematic Review, 2007, JAMA http://jama.jamanetwork.com/article.aspx?articleid=208915 'Based on the incidence of patients hospitalized for TBI and SAH reported in the literature and the frequencies of hypopituitarism in these patients, we have previously estimated the incidence of hypopituitarism caused by these disorders to be more than 30 patients per 100,000 population per year.'  More research is listed here http://www.headinjuryhypo.org.uk/html/research.html

*[2] Inside Health April 9^th http://www.bbc.co.uk/podcasts/series/medmatters  transcript http://www.bbc.co.uk/programmes/b01rr37c Mr Belli’s assertion is supported by Schneider’s systematic review (see [1] above) and by 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.’

[3] http://www.nice.org.uk/nicemedia/live/13499/64912/64912.pdf p.295  For late onset see Popovic V et al, Hypopituitarism following traumatic brain injury, Growth Hormone IGF Res 2005. ‘Onset of pituitary deficits can evolve over years following injury.’ http://www.ncbi.nlm.nih.gov/pubmed/15935980

[4] Baldelli R, Bellone S, Corneli G, Savastio S, Petri A, Bona G, Traumatic Brain Injury-Induced Hypopituitarism in Adolescence, Pituitary, published on line Feb 2006. "It is well known that treatment of hypopituitarism, in particular of growth hormone deficiency, has multiple beneficial effects"

The dramatic effects of hormone replacement therapy are illustrated by James Smith’s story http://www.bmj.com/content/347/bmj.f4572/rr/657462