Feeling cold

[Leiabug]

Morning all, hope everyone is ok, just wondering if anyone else experiences feeling cold after TBI, my son has freezing cold hands etc since his accident, when he was in hospital at QE Birmingham they wanted him to take part in a research what they do when injured soldiers have had when returning home from Afghanistan ( whilst he was in a coma) never did it as injuries were too .any, basically this is research into the effects of the pituary gland after a head injury, he might be a bit anemic, just wondered if anyone else has this.Thanks Sarah xx

[paxo05]

Hi, I'm the opposite as I'm usually always hot. Or at least I feel I am. Once I do get hot it can take ages for my body to realise I have cooled, although myself I still feel hot.

I had possible damage to my pituitary gland. Which has caused a virtual stop in certain hormone production. It is being looked into again as my type 2 diabetes seems unaffected by diet, exercise or medication. The feeling is it may also be linked to my pituitary gland.

Finding answers is a long drawn out process. Eventually I hope to find a way that works.

Pax

[Leiabug in reply to paxo05]

Thanks Pax, it's interesting isn't it, i wouldn't of known this if it wasn't for this research, as Shaun was on the military trauma ward at the time, it's not talked about often is it, i feel we we have to self help etc these days.Hope you get answers too, Shaun's GP is useless as the other day he went to him for his anxiety, but him on beta blockers, didn't even check his blood pressure etc.

He hasn't taken them yet, but i have noticed this cold feeling he has.

Hope you have a good day and thanks for reply and nice to know i can ask questions etc on here.

Sarah x

[paxo05 in reply to Leiabug]

I'm lucky in the sense my gp will always check things he's not sure on. With a bi it seems most things he's unsure of.

I must admit I ended up on beta blockers for anxiety, but this was done after checking other alternatives.

It's sad that even after the years since my rta nothing seems to have altered with treating a bi.

Pax

[Leiabug in reply to paxo05]

Yeah it's just this one particular GP that is at our surgery, Shaun always gets him, so maybe just need to make sure he gets an appt with one of the other GPs, it is sad to know that this hasn't been altered, i feel once you're discharged from hospital, your pretty much left to your own devices here, we live rural so this doesn't help nearest big town is an hr away! Thanks

[cat3]

Same as Paxo for me Leia. My endocrinologist diagnosed damage to the hypothalamus (close to pituitary glands) resulting in loss of temperature control. My main problem is overheating, even in winter, so summer is particularly uncomfortable. I rely on numerous fans and showers to stay sane !

But I also get intense shivering if I overdo the 'cooling' and it can take hours to warm up. The endo doc stated the frustration of a separate health issue preventing him prescribing HRT which, he claimed, would have addressed the issue.

Mine is mostly an overheating problem but I understand that feeling constantly cold is also an after-effect of brain injury.

Is it too late to approach the hospital to undergo the research, or was it a 'now or never' trial ? I ask because referrals to specialists through the usual routes are ridiculously slow.

Cat x

[Leiabug in reply to cat3]

Hi Cat, Ahhh that's interesting that you have this too as result of BI.

Well with Shaun, the research was done by an Army colonel consultant at QE Birmingham, but because Shaun had too many injuries they didn't put him on the trial as it invloved in taking bloods etc so to this day i don't know if his pituary gland has been effected , but his hands are so cold on a daily basis and he feels cold.

Maybe do you think i should get in touch with the QE

Sarah x

[cat3 in reply to Leiabug]

Definitely Sarah. Even if it's too late for the original trial it will alert the hospital to your son's ongoing issue and maybe give him access to other specialist investigation.

Ask reception to put you through to the consultant's secretary and explain the issue. Good luck, and let us know how you get on... x

[Leiabug in reply to cat3]

Thanks Kat, worth a try isn't it, i know it's been over 2 yrs now since his accident, but maybe they can help , as can't see going through our GP will help. The trauma team at the QE signed him off, would that make a difference? X

[Leiabug in reply to cat3]

As when he was admitted they obviously were in charge of his care and beacause of the various injuries etc. He had different consultants for different injuries X

[cat3 in reply to Leiabug]

Ask for the Army Colonel's secretary . Do you know his name in case he's moved on ? He's obviously a dedicated consultant and would be easy to track down.

Alternatively ask to speak with the secretary of your son's neuro-consultant for advice & information. It might come to nothing, and a standard referral might be the only option but, in this present NHS waiting list crisis it's worth a try. x

[Leiabug in reply to cat3]

I'll have a look through his medical folder Cat, maybe i can find his name. Thankyou so much for your help& advice, really appreciate it.Sarah xx

[Leaf100 in reply to cat3]

Glad you mentioned that, Cat3, I may ask for a referral to an endocrinologist.

Leaf

[Hidden]

Hi, I am/was the same after my TBI. My hands and feet were cold at the same time and I used hot watter bottle with thick socks on for my feet and a hand hot water bottle to keep them warm. After about 4 months my feet were fine and back to being "normal" but my hands were still cold. Now it's 11 months later and my hands are 95% better. They are not cold every single day, they are warm. On cold days they are cold and everyone is always saying "jeez why are you so cold". I don't know why. My Endocrinologist has ruled out pituitary gland problems or thyroid, as I have something else SIADH. I learned to do more exercise to help my muscles get back to coping with movement and changing my diet and what i drink, as in no coffee or lots of less tea. Exercise helped and helped my nerve damage to on my neck/bottom of skull. I know this might not help but stay try to stay positive.

[Leiabug in reply to Hidden]

Thank you for this, appreciate it x

[Janner123]

Hello

Interesting, yes my husband who had a tbi over a year ago always feels cold now even when it's really hot and before the accident he was always the one that felt the heat.

[Leiabug in reply to Janner123]

Yes it's interesting how a tbi effects the body temperature

[skydivesurvivor]

Welcome, hope y find support her. Either just some place to vent y frustrations or what we r all hear to help!!

[Leiabug in reply to skydivesurvivor]

Thank you x

[lcd8]

Hi there. I have a feeling this isn't the first time this issue has come up. I have a congenital BI and have always felt the cold in a big way. My hands and feet especially are always cold, evn in hot weather.

[Leiabug in reply to lcd8]

Thanks for that

[Notts22]

Hello Leiabug. The main problem I have is feeling very cold. I have to put hat a scarf on even when its mild outside. When indoors need blanket.People dont understand, even family think i can't be I'm sure people think it's attention seeking.

I have spoke to doctors who don't understand effects of brain hemorrhage. The Brain specialist says to take my temperature when feel and keep a diary of it. I haven't seen him again since but i believe its to do with damage to part of body that controls body temperature. I hope you find some help on this forum.

[Leiabug in reply to Notts22]

Thank you Notts 22, yes it's definitely to do with tbi isn't it, interesting to know some many have it too Thankyou for your reply and this forum is so helpful Sarah x

[Leaf100]

HI Leiabug

My understanding is it is very common for bi people to have issues with the hypothalamus as it is a dangly bit, for lack of a better expression, so easy to damage. There are all sorts of hormones in out bodies and I wonder how anyone skates by without any issues - heating system, digestive system, sleeping system, etc etc.

No caffeine and no alcohol are what I was told.

In my case, in the early days, I would be somewhere cold and people had to tell me to out a coat on. I couldn't tell. But, several hours later I would be somewhere warm and start shivering. So eventually I had to learn to assess and act accordingly, not rely on how I felt. As time went by its settled some - into overheating. I am often outside in shirtsleeves in weather where most are wearing a coat, though now I don't feel cold later.

In summer when it is hot I am pretty much useless and have a hard time doing anything - also a member of the extra shower brigade, spraying the air around me with a water bottle, wetting down my hair, running cold water over my wrists, etc.

I did go on hormones for awhile but my specialist retired and I am having issues getting them, I do a lot better with.

Cat3 mentioned the endocrinologist, I will try that, though the wait list here where I am in Canada is crazy long... and the other option is a naturopath, so I may try that first.

This stuff is complicated, we end up having to know way more about it than a lot of the docs do, yet it issues hard to get them to listen.

Leaf

[Leiabug in reply to Leaf100]

Hi Leaf,Thank you for this, i didnt know that.

Appreciate your message, it is complicated isn't it!

You take care

Sarah

[Hidden in reply to Leiabug]

I'd add that in the UK it could be best to go private if that is an option for you regarding Endocrinologist. Even just an initial consultation and blood tests might be worth the cost for you. The wait time can be long with the NHS.........too long! My partner also has a low sodium issue which can be life threatening so we didn't wait for the NHS to get into gear.

[Leiabug in reply to Hidden]

Yes might a good idea , thanks for that

[Skulls]

I have had problems regulating temperature since my ABI. My wife's solution is "put another jumper on!". I find our home uncomfortably cold during the winter and have to return to bed to shiver under a duvet. It doesn't help that she throws doors and windows open at the slightest increase in outside temperature.

[Leiabug]

Thanks Mark for your reply, strange isn't it how it effects the body! Nice to know your on this forum too. Shaun is off to Australia tomorrow for a 3 week holiday!! So think a bit of warm will help too