For the last few years, we have been working with NICE (National Institute for Health and Care Excellence) to update the current guidance on head injuries, and their relation to pituitary conditions.

We are delighted to see that this guidance has been updated following our comments. This means that in case of any severity of head injury, pituitary dysfunction should be considered. People who are admitted to hospital with a head injury who have persistently abnormal low sodium levels or low blood pressure, should be investigated for hypopituitarism. Previously the guidance stated that pituitary dysfunction following a traumatic brain injury was serious but rare.

Following this change our Head of Support Services Pat McBride says: “We are pleased to see this change after working with NICE for the last few years. We hope that it will ensure that people who have pituitary dysfunction caused by a traumatic brain injury can get the diagnosis and treatment they need sooner. This work is part of our strategy to decrease diagnosis time for those with pituitary conditions.”

We also spoke to Becky Holderness, who was diagnosed with AVP Deficiency (diabetes insipidus) four years after a head injury: “I think it’s so important that the new guidelines state “any severity of head injury” can cause hypopituitarism. Also, that symptoms might not present immediately, as was the case with me. 

Since I ‘looked fine’ after falling off a school table and banging my head (even though I blacked out), I was dismissed and sent back to my classroom. My pituitary symptoms began just a few months after my head injury, and it took me around 4 years to finally be diagnosed with AVP-D. If my head injury had been taken more seriously, I might not have had to suffer for so long.”

If you are concerned that you may have developed hypopituitarism after a head injury, please speak to your GP and share with them this new guidance. You can also find more information and support on our website. Our booklet for GPs can offer guidance and support for GPs when diagnosing someone with a pituitary condition.

We are pleased that our campaigns work has led to this change, which should mean better outcomes for those in the future who develop pituitary conditions after a head injury. We will continue to use our expertise to challenge guidance and improve diagnosis times.