Intermittent 'dead zones'

[Tinks101]

Hi, I'm new here and suffered a nasty TBI end of 2018. I grieved for the old me. We're any of you referred to see an endocrinologist? I've been researching my debilitating symptoms which have the last year (I believe) brought on perimenopause symptoms. I had to really push my gp to listen to me and im waiting for an appointment with a specialist endocrinologist at the hospital I was under for years (out patient). I was never advised that the pituitary/endocrine system can be damaged and can cause awful symptoms year on year afterwards. Anyone else relate 😪

[cat3]

Yes, I was referred to an endocrinologist for a severe overheating issue a couple of years after a brain haemorrhage ; the only appropriate treatment being HRT.

Owing to extensive use of HRT, prior to developing breast cancer, the specialist wasn't prepared to prescribe it further.

Now, 12 years on, I still struggle with temperature regulation, managing it with large fans, cool showers, cotton clothing and keeping hydrated.

Hope your issues can be identified and treated Tinks... x

[Tinks101 in reply to cat3]

Hi Cat, thank you so much for your reply 😊 and thank you, hopefully I can find some answers and maybe a semblance of my life back 🤞Wow, what a journey you're coping with. Have you looked at homeopathy at all? It may help with your tempature problems.

I suffer with a chronic & acute skin condition, have since my 20s which is incurable and I was fed up of antibiotics/surgeries as a treatment or the option of a drug that required a regular blood check on my liver 😬 so I tried homeopathy and it doesn't half help bring the abcesses out, relieving the pain, speeding up recoveries and eliminating the use of antibiotics. I can self manage.

My symptoms since my TBI are pointing to growth hormone or cortisol, but the thing is its so bloody complex I get lost trying to understand it and the symptoms are so similar in each part of the endocrine system. Once one is out it can knock everything else out of whack.

I never appreciated how wonderful a working endocrine system makes you feel and what a huge job it does until its no longer working right and you feel like crap or muted or inhuman. It's debilitating and I'm barely existing atm.

Tinks x

[cat3 in reply to Tinks101]

I too struggle getting to grips with the science behind medical issues. Since the brain injury, my capacity for processing technical information is seriously depleted !

I did see a homeopath a few years ago but his choice of treatment didn't instill confidence and I suspected the clear, tasteless medicine to be nothing more than tap water ! 🤔

I guessed it wasn't harmful and gave it the benefit of doubt by finishing the two week course, but with no improvements whatsoever...

Your issue sounds complicated but if it's a pituitary problem it can be treated effectively once diagnosed.

My best friend's son was fortunate in one of his college friends recognising certain irregularities about him. He was referred to an endocrinology specialist, diagnosed with Hyperpituitarism, and treated (successfully) over a period of time.

I hope your appointment comes through soon m'love. Keep me updated won't you Tinks...

Cat x

[catrabb1t in reply to cat3]

Hi everyone, I am please you raised Endicrinologist Tinks.

I was wondering last week (then forgot till I saw this post!), if feeling overwhelmed could fall under Endocrinology? It is a mental overwhelm which presents in a variety of ways depending on situation. If I am with others I get very 'het up' and frustrated and do not cope very well emotionally. Thats an polite way of describing it!m Imagine a big baby getting frustrated, angry then laughing then needing to leave and be alone and probably sleep. If it happens when I am alone, i feel tired, confused and vacant and need to sleep. I can also feel unwell. Since surgery, recognising my own cogintive changes and barriers has unfortunately made me feel unwell, I think it is the stress of acknowledging it.

So sorry for the lenght. I would google it but am really struggling looking up and reading new information. I have just had the idea to phone Headway with the question! I will do that! Cat's comment about body heat has made me thin about this. My body heat is excessive. Had no heating on for over 2 years!

If you have any thoughts that there might be a hormone link through BI could you let me know please.

I know these symptoms overlap with perimenopause and I began HRT after my surgery because before having it I had been thinking about having it due to symptoms. The HRT helped my symptoms. I feel my current symptoms come from my BI because they feel different and have a different pattern to the menopause ones. It has been hard trying to unravel what symptom is attributed to what condition! I think I am clearer about it now.

Is there a specific test I can ask the GP to run initially, or does it have to be a Endicronologist?

Thank you xx

[Tinks101 in reply to catrabb1t]

Hi Cat 🐈

Your GP can perform a fasting blood and urine test to have a look at your hormone levels, but I would definitely ask for a referral to an endocrinologis because I've had a few blood tests by GPS and they showed slight anemia but that was it.

You may need a MRI so they can look at your pituitary gland etc, however, I've read in scientific papers that a high percentage don't show any damage, but the patients still exhibit/suffer symptoms.

The pituitary and hypothalamus are vulnerable to injury after TBI and can cause endocrine problems, sometimes years after initial injury.

Your endocrine system is super important (and complex) to enable normal functioning as a human so if it's out of whack you get allsorts of symptoms at varying levels of severity.

Hope this is helpful, but don't hesitate to ask if not. I'll do my best to help.

Much love

Tinks 🐈‍⬛ x

[Tinks101]

Hi Cat, appologies for this 'wee hours' reply, so I hope the notification doesn't wake you 🙏 My sleep is bad atm due to insomnia (I feel wired), then my brain has to eventually shut down but at abnormal times of day 🥴 it's strange sleep too.

Anyway.. I'm sorry you had no relief. I'm extremely lucky getting the right remedy for my condition. It can be a bit hit an mix as there maybe be different remedies to try if one doesn't work and I have an added bonus of free treatment (family member is one). I tried homeopathy within the first year of my bleeds but my symptoms were new and so alien to me I wasn't able to communicate them at all, I still struggle too now so to my friends and family, I call it the 'dead zone' so they understand when I'm in it.

I've been, frustratingly, unable to pinpoint what sets it in motion (sometimes its after I'm sick) or why it lasts for months on end and why, for no reason I'd start to feel more normal, pre injury even. I'm that goddamm happy I'm functioning again I just crack on with daily living and have dared, in the past, to hope it never returns so I can try to rebuild my life only for it to hit again, boom, with the added bonus of my time spent in the zone getting longer and longer.

Tilll now professionals thought I was depressed but I knew it was something more, I've had bouts of depression and the 'dead zone' isn't it. I only started looking into endocrine problems when my periods started to change and it's lead me to this point.

Thank you for telling me about your friends sons positive outcome, he was lucky someone he knew recognised it in him as its extremely convoluted.

I will definitely let you know how I get on. Take care of yourself.

Much love, tinks x 🐈‍⬛

[cat3 in reply to Tinks101]

I've taken note over past years how my sleepless nights always coincide with the full moon. I remarked on it idly at the start but now it's way past coincidendental stage.🤨

Feeling 'wired' and plugged in to the mains is exactly how I describe it too m'love ! 🥱

Let's talk again soon...

Love Cat x

[Insaneinthemembrain]

I relate Tinks.. I passed out because of a hot flush brought on my the menopause and bashed my head on the way down suffering a TBI.. it’s completely changed my life and I’m trying to get better but also dealing with the menopause as well! I feel like I’m going a bit insane with it all!

Trying to stay positive but it hard, the anxiety seems to be the worst! Sending hugs.. hopefully we can both find a way to get through it and be fabulous and strong on the other side xxx

[Tinks101]

Hi, thank you for reaching out.

Who'd be a woman eh 😬

Yes I'm glad I'm finally on the right path to at least get some answers. I think half the time the frustration is not understanding why it's happening.

Wishing you the best and light at the end of the seemingly loooong tunnel lol

Tinks x

[Hidden]

Hi Tinks,

My partner has, and still does see her endocrinologist (private as NHS twice dropped the ball on referral) after a severe TBI on November 2022. She was diagnosed with SIADH due to pituitary gland damage which can lead to coma and death if not monitored/managed properly. Effectively she retains too much fluids and loses too much salt if she drinks too much which has on 2 occasions resulted in hospital trips due to dangerously low sodium levels. She manages this issue through limiting fluid intake and has adjusted her diet to eat more foods which have natural salts in them and has been in the safe area with regards sodium levels for a few months now. Her condition may resolve itself over time, but only the effort she has made in changing diet and fluids has improved the condition.

Hope this helps, and reach out if you have similar issues and she can help you.

[WonderingWanda]

I was lucky enough to have blood tests early on to check the pituitary function and I was on HRT and thyroxine already anyway. My sodium was low for a while but I restricted fluids a bit and it self righted. Lucky for me.

At least you have been referred for a check up. Hormones are treatable with relative ease so let’s see how it turns out. Keep us informed.

[skydivesurvivor]

welcome! Toughest part is letting go of the old ME, accepting the new you. Have 24 years experience , so many challenges. Lucky in have very few emotions left, lost family, friends act. Given up on GP, social services. They have no idea about TBI. New life is sure a challenge!! Good luck 🤞

[Tinks101 in reply to skydivesurvivor]

Hi 👋 thank you 😊

Yes, I agree, it's a long, lonely, arduous road, and it's not helped by the lack of proper treatment or general support post injury. I've had to keep pushing (when well enough) to be taken seriously.

Reading some people's experiences on here I think I've been lucky.

This country doesn't take a head injury, even concussion serious enough.

Tinks 🐈‍⬛ x

[skydivesurvivor in reply to Tinks101]

Came out of hospital, saw DHS doctor who asked me 3 simple questions, stopped benefits. Year of living of bank of M&d. appeal was awatded13 points, only needed 6 for long term incapacity!!

[skydivesurvivor in reply to Tinks101]

Just good to know we ain’t alone!!