TBI new symptoms

[Morinagirl]

Hi everyone. My tbi was a year ago after a fall in my garden. I have, in my opinion had a distinct lack of care and this worries me greatly. My predominant problem is a lack of temperature control so this heat is killing me as I feel cold inside but now am over the top sweating but only in isolated areas. I have had tests which showed nothing and consultant speculated that I have stretched my pituitary stalk. To add to this my bp has now plummeted, 85/77 and i feel dizzy even just from turning over in bed. Has anyone experienced this please ? I am reluctant to call my gp as they frankly do not seem to care..... any advice gratefully received

[Pairofboots]

Hi Morina, although you don't hold much confidence in your GP, this is something that they should act on. Often it is difficult to get passed reception, but you need to get through to a doctor. Low blood pressure is a concern that they must address even if that is the only symptom they treat. 🍀

[Morinagirl in reply to Pairofboots]

Thankfully I did speak to a GP at my practice who Ive not dealt with before and she was great. Listened carefully to my concerns and I have to submit bp readings over a few days. If it continues she will refer me to endocrinology for further investigation. Just hope that my consultant can now explain the temperature thing as apparently my bloods for the second tests I had also are normal. Am so fed up with this but appreciate your reply so much

[cat3]

I, like you Morina, have 'Hyperhidrosis' which is the bane of my life ! The endocrinologist judged it to be a pituitary issue and all he could offer to minimize the overheating was HRT which I can't have unfortunately ; if you haven't tried this route maybe you can ?

GPs who don't seem to care at least have a duty to refer you to those who do.

If possible, you could make an appointments with the practice nurse at your GPs surgery for blood pressure checks until your BP shows normal for 2-3 months.

Good luck in finding help m'love, Cat x

[cat3]

OOps ....your reply to Boots appeared as I clicked send ! x

[Morinagirl in reply to cat3]

Not to worry....thanks for replying. My problem is somewhat the reverse. I feel cold and numb in my legs and hands mainly. But, my body obviously now knows it is hot but I am sweating profusely only from my forehead and under my boobs. So i am possibly overdressing the bottom half of my body to counteract the coldness as it is very uncomfortable. I have had 2 lots of tests for cortisol etc they have all come back normal. Consultant said I may have stretched pituitary stalk but didn't give me any info on that so I don't know if its permanent or not ? The low bp is a new addition to various othrr symptoms on top of the above. I honestly give up I cant seem to get a straight answer and it seems to be quite common amongst people with tbi....sigh ....

[cat3]

Yes it took over a year to get my BP regulated ; it was a junior doctor in A&E who finally sussed a medication issue. But BP problems aren't uncommon in my family.

And it's forehead & boobs only for me too ! ...but I don't have the cold or numbness in lower body. Have you seen an endocrinologist ?

[Morinagirl in reply to cat3]

No, I havent even seen my consultant, everything has been done over the telephone. See above gp said she will refer me to endo if.bp is an issue over next few nights. It stabilises during the day. My consultant did a few bloods based on phone calls to endo originally so who knows....watch this space I guess

[TinT22]

Hi MorinaMy husband had been having this problem after coming out of hospital, all they could find was a low Sodium count and put him on Slow Sodium. He was also cold but getting hot flushes. He collapsed in April and was taken to hospital while we were staying with family. That hospital did lots of tests and endocrinology found He had adrenal insufficiency and put him on Hydocortisone. He's been much better since, his blood pressure stays up and he doesn't have any of his symptoms apart from hot flushes. Endocrinology has now sent him for blood tests today to check out the rest of his hormones. A damaged Pituitary Gland stops sending out the signals to other areas. Why the Dr's don't refer you to Endocrinology is beyond me. We've been told my husband could have died. Thankfully he's recovering now. Keep pushing for a referral, it's your right.

[Morinagirl in reply to TinT22]

Oh my, thank you so much ! I hoped someone would recognise the symptoms I have. I've been like this for a year now and it's getting me down. I will ask my gp to refer me as I don't get my consultant call until the end of July

[Leaf100]

Hi MorinagirlAlso get your thyroid and parathyroid horomrs checked. I am not sure if the endo will do those automatically. They are two other important regulators that can play havoc when not functioning properly. All the regattas can be impacted by bi it is not uncommon.

There can also be a delay in response - for example you may not feel cold when the wind comes up but several hours later when somewhere warm you will start to shiver.

Hope you get yhat appointment soon.

Remember you can always call Headway for a chat.

Best, Leaf

[Morinagirl in reply to Leaf100]

Thank you so much for the pointer. Turns out I have covid which may explain the dizziness after all !! Did not expect that I don't go anywhere lol. Feel dreadful....

[Leaf100]

Oh, so sorry to hear that! May you recover soon!

[sealiphone]

I learned it too many years ago but your GP should look for how the brain regulates our temp, as this may a symptom of your brain injury.

So I'd ask for the opinion of the ABI service specialist in your local health authority area, rather than see doctors who have little or no knowledge, a second opinion just in case it's directly caused by your brain damage.

[Morinagirl in reply to sealiphone]

Oh ok, that makes sense, thank you so much

[Merl1n]

Hey Morinagirl,BIG + to Sealiphone's comments. GP's, as their name suggests, are good when it comes to 'general' medical needs. When it comes to neurology I would not consider it as 'General', you NEED to see a specialist. Now, in saying all of this, even a neurologist may ummm and ahhh over a diagnosis.

I too have MAJOR temperature issues (and MAJOR issues with GP's). I was given every diagnosis known to man from hyperhidrosis to mental health issue, that was until they found the true issue. I was then sent to a neurologist, then a neurosurgeon and it was the surgeon himself who actually told me "we don't know everything about the brain, for some, they can bounce back OK and yet for others the issues can be never ending and we don't know why..." So as much as the GP think they know all about it, when even the specialists themselves admit they don't know everything, it's more the GP's ego than a diagnosis based on fact.

[JULIETstevens]

Your petuatory gland can heal and go back to normal. Mine did but it took time.

[Morinagirl in reply to JULIETstevens]

That's really helpful and good to know x

[JULIETstevens]

I'm glad to help. My tbi was 4 years ago. How are you doing in your recovery?

[Morinagirl in reply to JULIETstevens]

Well, mixed really. Getting covid has really been awful. The temperature thing is my biggest handicap and affects so many areas of my life. It's made worse my movement so when my bf says go out for a walk it's very frustrating I still have to use a walking stick. Fatigue is an issue and I still slur /dribble when tired. I have triednto manage my symptoms myself as I have had no help from nhs in general. I have this thing where it's almost like my brain forgets to tell me to breathe and I nearly choked the other day as I had food in my mouth. But a year down the line have realised it's not that long. What about you, ? X

[JULIETstevens in reply to Morinagirl]

I used to dribble lots but that has stopped now as I try to focus on the left side of my face but of that doesn't work then sod it. People don't care. They're just glad you are alive

[Morinagirl in reply to JULIETstevens]

That is so true. I had a real freak fall and could easily have not been here. I also struggle with the whole personality change thing although I am slowly coming back. Luckily my lawyer daughter is very kind and gives me a few hours work that she knows I can do but doesnt judge if I cant. I have had to rely on benefits which is hard when you are independent and used to earning your money x

[JULIETstevens in reply to Morinagirl]

i was a successful lawyer on a very high wage post tbi so becoming unemployed and on benefits has been a dent to my pride. however, as my hubby reminds me, we paid our taxes when we worked, so are entitled to rely on benefits now we are unable to. Good on you for working that little bit. what area of law is it in? I did Wills and probate before my tbi... Anyway, do you have hobbies you can pursue now you have the time?

[Morinagirl in reply to JULIETstevens]

Same ! Haha, I love the work. I was a self employed assistant/admin to a mortgage broker prior to my fall, same, was earning really good money. I don't feel so bad aboit claiming the benefits it was the traumatic process that did me, they don't really accomodate for it. I couldn't speak very well at all at the beginning. Needless to say i now have LPA's in place now, something that everyone should consider because you just don't know what's around the corner x

[JULIETstevens in reply to Morinagirl]

Definitely. I was a solicitor and used to prepare and register lpas for clients. We needed to use my financial one when I got ill

[JULIETstevens in reply to JULIETstevens]

Also you don't need to pay a solicitor to do an lpa for you. Just go to the office of the public guardian website and print them off yourself