Hormone treatment

[FlowerPower62]

There are so many helpful people on here to whom we have cause to be grateful, for their many suggestions. In particular we owe a great deal to Joanna Lane, who set us on cause for the hormone treatment my husband now has. If you can, read her book, "Mother of a Suicide". Don't be put off by the title, it is truly inspirational. Or look at the christopherlanetrust.org.uk. A TBI can damage the pituitary gland, causing hormone imbalance - please check out the above for symptoms. Get yourself tested - if the initial test, the short synacthen test, comes back normal, ask for further tests. This happened to my husband, took a long time, but he's been having daily growth hormone injections since December and we're very happy with the improvements he's made. Worth a try!

[paxo05]

Hi, It seems very difficult to get a proper diagnosis or connection to bi and hormone imbalance.

I questioned this after my bi but was always given an alternative reason for the " temporary " dip in my hormone levels , even my age( I was in my late 30's at the time).

It was put down to depression weight ,gain adjusting to the changes since bi. They all agreed I had damage to my pituitary gland, but was assured it would improve.

Then my levels dropped completely off the scale. Such so that the tests were repeated, and repeated and repeated.

Finally saw a specialist who was surprised I hadn't been referred sooner.

The upshot being after trying creams and patches I now receive hormone injections every 10 weeks.

My life has improved and I will put up with the injections ( they are not very nice).

Thanks for the advice ,

Pax

[FlowerPower62 in reply to paxo05]

It's awful you have to fight for everything, when something so simply can change your life. X

[pinkvision]

Yay, happy you eventually found something. What kind of changes happened?

[FlowerPower62 in reply to pinkvision]

Little things really, gradually, but all add up. His mind is clearer, his speech is better, he can join in more in conversations ( this used to be a real block). He is more motivated, even agreeing to a personal trainer twice a week which has also helped build up his muscles and fitness. ( He even opted to do a second course without any encouragement.) He does more, jobs around the house, he's not sitting in front of the TV as much! He can walk further without getting as fatigued as before, although it is still there, don't think we'll ever get rid of that! Same for the dizziness, that's much less, but not gone. I see more of his old sense of humour, and the empathy which seemed so lacking is now in evidence. But who knows, perhaps things will continue to get better.

After over 3 years, thinking nothing was going to help, I'm really happy with all of these changes. I come in and find him doing his Strong Minds puzzles too, without my having to nag him.

So yes, it was definitely worth doing.

[pinkvision in reply to FlowerPower62]

Having the motivation to do things is more than 50% of the battle. It takes time to rebuild a new self, a little patience and effort and it will come. So happy for you both.

[FlowerPower62]

Thank you. All I know is that this is the nearest he's become to being the Ian I knew, so I'll take that. You've been a great support these past 3 years. Xx

[Pairofboots]

Brain injury can also trigger the body to destroy itself in an auto-immune response. This is also difficult to identify as routine blood tests don't necessarily identify deficiencies, and can trickle along in the background before they become symptomatic. From experience, I don't think there is a specific test that reveals this as a cause, or a broad screening that will identify problems.

[headwayuk Partner Headway]

Hi FlowerPower, thanks very much for raising this important issue.

We have some information about this on our website too, which might help anyone looking for information: headway.org.uk/about-brain-...

Joanna has been inspirational in raising awareness of this.

Best wishes,

Andrew

[FlowerPower62]

She certainly has been amazing. Thanks for your endorsement, I'm surprised more people haven't commented!

[TinT22]

My husband has been having problems with sodium drops since being discharged from hospital in February. He also had very puffy feet and legs. I had asked the consultant to refer him to endocrinology to test his hormones and he said he'd send a recommendation to the GP. Then Easter we were spending the weekend with family in Yorkshire and my husband had a collapse, falling in the shower, unresponsive and confused. He was taken to Hull Infirmary where they did scans and blood tests and endocrinology found that his adrenal gland wasn't working, his Cortisol was only 48 and his sodium was 120! They put him on steroids and after a few days his sodium was back at 140 and Cortisol was up to normal. He's way better than he was when first discharged. He's not sleepy, he's eating and drinking well, he speaks to me and helps in the house now. Our GP is now doing regular blood tests to observe his levels and referring him on to endocrinology. As awful and stressful as the collapse was, at least they've found the cause and I feel I've got him back

[FlowerPower62]

That's terrible that that's what it took to get treatment! But so glad it's helped👍