hypopituitarism caused by head injury - appeal for stories

[Caroline Churchill]

Hi everybody
We are updating our website http://www.headinjuryhypo.org.uk which is about pituitary problems caused by head injury. We'd like to make the website more personal by including stories of people who've had a head injury and are suffering from pituitary problems. Even mild head injury can cause hypopituitarism, though you are more likely to be affected after moderate to severe injury. Symptoms don't necessarily occur straight away, they can appear a long time after the injury.

We're hoping that if Pituitary Chat members can share their stories, it will mean that anyone surfing the net for help with sexual problems, infertility or depression, or uncontrollable weight gain, who have never connected these things with a past head injury, may come across our website and read stories that will make them think "This is me!" Then perhaps they will get themselves checked out by an endocrinologist and their lives will be turned round.

So if you have a story that you are ready to share, I would love to hear from you and we will publish it on the website.

For members who didn't see my postings of about a year ago, I should explain that our son committed suicide in August 2008 and we believe it was because of undiagnosed hypopituitarism stemming from a serious head injury he'd had when he fell out of a tree aged seven. We found letters that showed he hadn't been able to consummate his relationship with his girlfriend (she confirmed to me that they had never had full sex in the four years they were together), and we discovered a mass of research that showed that pituitary damage is common after head injury. Just google 'head injury' and 'pituitary dysfunction' and you will find it too.

I've been trying hard for the last eighteen months to make sure this problem is more widely recognized and I'd be grateful to hear any ideas. Consultants are helpful and some hospitals have changed their protocols, but the response from government organisations and charities has been disappointing.

[Bev]

Hello Caroline
As you know I was very interested in this link as in my teenage years I fell whilst horse riding onto my head. I think you are very brave to continue with your research and website and I hope you get many more responses from new members on here.
Bev

[Caroline Churchill]

Thanks Bev, and thanks too for the detailed story you sent which is much appreciated.

I'm going to see our MP today! What I'm pushing for is that head injury patients should be warned in their discharge letter when they leave hospital, that if they develop symptoms of depression/loss of libido/weight gain etc they should ask to be referred to an endocrinologist. I think it's their right to know the risk, and it's scandalous that it doesn't happen. As it is, there's so little chance that they will connect their problems with a head injury, especially if it happened a long time ago.

Wish me luck!

[Paul Clarke]

Hi Caroline,

Thanks for all your hard work. If there is anythg Pit Chat can do to support you, please let me know. I was wondering if a poll would be useful as there are some people that would vote but might not be up to typing out theit full story. Also, is there an email address for the many people that regularly use this site but are not registered. This site is also used by endo teams doing research. If you would like a dedicated email address (WhatEver@pituitarychat.com) , that can easily be set up. This applies to all members. For what it is worth, I suffered head trauma before I became ill although I have no reason to connect the two in my own head ('scuse the pun)

Ho[pe this helps,

Paul

[Bev]

Good luck Caroline-you deserve a breakthrough after all your hard work. Let us know how it all goes & what your MP can do to help you.

[Caroline Churchill]

Hi Paul
Thanks for your helpful post. Yes maybe a poll just asking people if they ever suffered a mild, moderate or severe traumatic brain injury would be interesting, and if they could specify their particular pituitary problem.
Re an email address - well, anyone visiting our website http://www.headinjuryhypo.org.uk will find my email address there, (joannalane@blueyonder.co.uk) so I don't think I need to set up a dedicated address - though thanks for the offer!

I would love to hear the story of your own head injury. I agree there must be many cases where people have head injuries, and they get pituitary problems purely coincidentally, and the two are not connected. I'm going to put a disclaimer to that effect on the website.

Was it a serious injury? Did you lose consciousness? I understand basal skull fracture is a particular risk factor for pituitary problems.

[Paul Clarke]

Hi Guys,

Please spend a few seconds by filling out the poll on viewtopic.php?f=12&t=3832&start=0.

Thanking you in advance,

Paul

[Caroline Churchill]

Thank you Paul, that is so kind of you. I would really appreciate it if everybody could fill it in, though I can understand that many members have to struggle to do the essentials, never mind the extras. Thank you guys anyway!

[Bev]

Hello again
Have just looked at your website & it is really thought provoking. It will be very powerful when the stories are posted. I am so impressed with your determination to inform others after all your sadness. I hope you can make a difference.
Bev

[Caroline Churchill]

Dear Bev
That is so nice of you, thank you. Actually it's a comfort doing this, and has brought me into contact with a lot of lovely people.