Post concussion syndrome and reaction of others

[Headinjuryhypo1]

Hi, this is a reply I gave to Suwariwaza recently, which Gracissufficient asked me to post as a main post as people don't always scroll down. I do hope the information here helps people.

"All these replies are valuable and interesting, and I didn't know about dysautonomia. I haven't had a head injury myself (thank God!) but my son had one as a child, and I think suffered the after-effects of it until he died by suicide at 31. I cannot bear now to think how unsympathetic I was, and how, somehow, cross with him that he couldn't seem to be happy. I can understand your family's lack of support, though I absolutely don't condone it. After Chris's death I learnt so much, and I'm passing it on here in case it helps you, and James, GCS3 and Headlag.

A quarter of head injuries, and 16.8% of concussions, cause damage to the pituitary gland, which then doesn't produce some/all of the vital hormones your body needs to function properly. The first of these to go is growth hormone. If you don't have enough growth hormone you can have problems with your heart, bones and liver, you suffer fatigue, may suffer loss of muscle, may gain weight. All these are terrible, but the worst problems are with your mind. Depression, anxiety, memory issues, social isolation. Your libido can be affected too. Your relationship may break up, you may lose your job. The risk of suicide is x4 after severe head injury, doubled after concussion. BUT if it is treated and you get regular GH replacement you may feel fine again.

It is a scandal that head injury survivors are not routinely tested for this. If you go to your GP and ask to have pituitary function tests, you are likely to get basal tests for most of the pituitary hormones, but you will not routinely get the proper tests for growth hormone deficiency (GHD) or cortisol deficiency. You may get an IGF-1 test for GHD and if your level is normal you will be told you don't have GHD. However, this isn't true! If you google you'll find that 65% of GHD patients have normal IGF-1. (To test properly for GHD you need a stimulation test, which is most likely to be the glucagon stimulation test or the GHRH + arginine test. The glucagon test has the advantage of diagnosing cortisol deficiency as well as GHD.)

After the GP has done the simple basal tests he is likely to say 'All your other pituitary hormones are normal, your IGF-1 is normal, so there is no need for a stim test'. This is where you have to stand up for yourself. Concussion survivors are likely to have isolated growth hormone deficiency. If you need support to fight for testing come to us at christopherlanetrust.org.uk and we will do our best to help.

I have said all this on the ME/CFS website, giving the underpinning research, see meassociation.org.uk/2021/0... There is also a leaflet on Headway's website headway.org.uk/media/12059/..."

[Graceissufficient]

Thank you ... is it possible to get these tests privately, and do you have any idea how much they might cost?

And does anyone on this forum know if they are carried out (under insurance) in the US for concussion sufferers?

[Headinjuryhypo1 in reply to Graceissufficient]

Hi, according to this link healthline.com/health/growt... you should expect to pay about $70 for a glucagon stim test, probably less for a macimorelin test. I don't know about the insurance aspect for concussion sufferers, I hope there's someone on this forum who knows. The only other thing I can contribute is that Dr Mark Gordon in LA is an expert on brain injury rehab and says all the right things about pituitary dysfunction. Also the Transitional Learning Center in Galveston, Texas. en.wikipedia.org/wiki/Trans...

Probably if you asked either of these they'd know about insurance. If you find out anything useful, let me know, and good luck.

[Headinjuryhypo1 in reply to Graceissufficient]

Dr Tamara Wexler at NYU School of Medicine, Dept of Brain Rehab, is also someone who knows all about hormonal dysfunction after concussion.