‘Mother of a suicide:fighting for the truth’ book by Joanna Lane

[Agapanthus]

I believe Joanna has written on this forum in the past about Post-traumatic hypopituitarism. Joanna has now written her own personal story about how she got involved in advocating for PTHP sufferers. She was the author of an article in the Daily Mail 2 years ago which highlighted this condition - one that is often misdiagnosed, sometimes as ME/CFS dailymail.co.uk/health/arti...

The true story starts in the UK with the suicide of Joanna’s son and how she, with the months following, tried to understand and make sense of it. She found out from his medical records and other personal information, that he must have suffered from a medical condition that was never diagnosed – Post-traumatic Hypopituitarism, known as PTHP.

Joanna discovered although there is a relatively high risk of pituitary damage after brain injury, the symptoms of which can happen months or even years after the event, that few people are warned of the risks at the time. In the years following therefore if they then get seemingly unrelated illness, they may not tie up the things together, and it’s likely that neither will the medical experts that they see. Unfortunately also the standard testing for pituitary issues is lacking and does not pick up many cases, and the other better testing is not always done, so the patient goes away still undiagnosed.

Some of these people will be diagnosed with ME/CFS and fobbed off. Some perhaps diagnosed simply with depression as that is a factor too with PTHP.

Joanna has spent years since Christopher’s death trying to highlight this gap, and ask for specialists in the field to simply point out the risks when the person gets brain injury. You would think this would be straightforward but she has been blocked at every turn, sometimes by the charities that represent the patients and sometimes by the Government agencies who are supposed to help, such as NICE. As well as a very human and moving story which is a fitting tribute to Christopher’s memory, to ensure that no one else should suffer as he did, it is also a record of what she has done over the 8 years since he died, (not entirely successfully due to the blocks that have been set up by persons unknown), to highlight a condition that can be helped, if known about.

Joanna seems to have achieved an amazing amount single handed. She is still trying to get the information out there. If you have had a brain injury in childhood or later in life, you may want to read this book or explore the subject of PTHP as it could be the key to understanding your own problems.

[shaws Administrator]

Thanks for posting and the Mother - even though traumatised by her son's death is to be praised for trying to raise awareness of a condition ignored and unkowledged by the medical profession.

Dr Skinner, now deceased, was always trying to engage with the Endocrinology but was always ignored. Being a virologist he was being sent patients with 'mysterious diseases' which were no doubt undiagnosed as their TSH didn't rise sufficiently to be diagnosed. He prescribed thyroid hormones and he saved lives but was then villified by the Medical Profession, no doubt because he wasn't an Endocrinologist. He also stated that people were in a 'parlous' situation and remaining undiagnosed due to the 'guidelines' and ignorance of symptoms and the insistence of the TSH rather than symptoms.

[Agapanthus in reply to shaws]

Thankfully Shaws there are some individual consultants that she mentions in her book who have taken note. It's just a shame that the NICE guidelines were not updated when they came up for review, despite efforts to get something in there. No explanation - just a brick wall.

As you say though, there are always these 'mavericks' that the establishment does not want to listen to, even though they are prophets in their time.