My 73 year old dad hasn't been himself since around early 2023, not his jokey self, reserved and quieter. He looked after my Nan throughout the pandemic and care increased over the years since, moving to end of life care from start of Jan until she passed away in May this year. Over this time he has has dizziness, poor gait/back pain/stiffness, headaches, said he had brain fog, some tummy pain, pins and needles and cramping in arms and legs, slowness, heavy legs, not always looking at you in the eye when talking, having to really focus on food when using knife and fork to gauge distance and Tinnitus (Tinnitus has been a symptom for years). Doctors did blood tests, said all was normal and to keep an eye on him (unfortunately i don't have B12 level from this time).
My Nan was a great age and albeit sad my dad was relieved when she passed but his symptoms didn't lift. Two months after she passed, my Dad drove 5hrs to Devon for a holiday with my mom and started to become confused about where he was, he drove back 5 days later and was in car for about 7hrs.
2 days after returning he had pains down his side and confusion similar to a few days previous began again. We took him to A&E and he was treated for a UTI. In hospital he experienced delerium as was very scared as hadn't been a patient in hospital before and ward was very noisy and chaotic.
After 3 or 4 days he was discharged and informed he was B12 deficient (176) and iron deficient. Most of the delerium lifted once he was home but he was very fatigued and anxious (never suffered with any depression previously).
Had 6 B12 loading injections but no change so we went to Cambridge iron clinic where he had iron infusion and we now inject him twice a week and he has folate and vit D cofactors. It's been nearly a month and a half since starting twice weekly injections (14 injections in total) the fatigue and anxiety have gone (albeit he is cautious) and he's had 2 or 3 what he calls experiences where he said all of a sudden he noticed he felt normal and it just came over him and took him by surprise e.g he didnt need to focus on distance when using knife and fork to eat and his legs and walking felt normal. We hope these experiences increase and increase until he is back to his normal self.
My mom is worried as there have been some bad days too (which dr advised there would be) Dad said he had a visualisation of someone in a high vis in the garden (I think it was brought on by stress of neighbour having unpleasant workmen cutting trees that overhang their garden and another time where he could see a green light when lying in bed at night), the delerium hasn't fully lifted since 2 months ago when in hospital; he couldn't put hob discs back onto rings, bought a neighbours bin down drive rather than his own, put things away in wrong cupboards, trouble with TV remote, these things never happened before he went into hospital.
I've read about other people 'crashing' and I think this may of happened to my dad, my mom is worried but I'm trying to calm her and encourage her to stop being critical over minor things that create stress, correcting my dad for calling coconut water coconut milk or him saying something is the colour cream and her correcting him its white!! My view is that his nervous system is shot after years of flight or flight looking after Nan, so he will start accupuncture next week and has returned back to his holistic chiropractor after 6 months break which he tends to walk better after .
If anyone has any words of encouragement, advice or has experienced something similar it would be great to hear from you. Thank you 😊
Written by
Mintylidg
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Hi, I'm so sorry your poor Dad is having to go through all this, and so worrying for you and your Mum too.
However, as Nackapan says, it's early days - really early days !
Early both in terms of the delirium and the B12 treatment.
I can only relate my own experience with B12 injections.
I was in my early 50s, yet it was at least 6 months before I felt I'd improved and even longer to get to where I am today, which is pretty reasonable health.
Conditions which affect the brain, like delirium and concussion can take a surprisingly long time to resolve .
I slipped and banged my head last December, and developed a 'post concussion syndrome ' which took nearly three months to disappear.
Here's your Dad, aged 73, and exhausted after caring and worrying, trying to get over several health issues at once.
I wouldn't be surprised it it takes longer to recover.
It seems like his doctors are keeping an eye on him, so as long as this and his treatment continues as long as necessary, there is a lot of scope for improved health !
If switch to every other day injections to see if that helps get rid of symptoms.
Presume you are only paying a pound or so for each injection. If paying a lot more, it's worth looking at B12 wakeup group on FB.
Really worth getting hold of all blood results and seeing if there's anything else to tweak. Anything close to being too low or to high us worth checking out further online.
I think it's very positive that he's having days where he feels normal.
Recovery from B12 deficiency can be a long, slow process especially if someone has been left untreated for a long period.
I speak from personal experience of many years with untreated B12 deficiency. When symptoms were at their worse in my 30s and 40s, I had many neurological symptoms including dementia symptoms and spinal symptoms and my mental health was poor.
After treatment started, my symptoms improved for eight years running. I need far more B12 than NHS will give me which seems quite common on this forum.
It's common for people with B12 deficiency to experience symptoms getting worse when treatment starts before starting to improve. Some forum members keep a symptoms diary to track changes in symptoms over time.
It's quite common for forum members to also have folate, iron and vitamin D deficiencies.
Is he taking folate supplements?
I've read that in a person with both B12 deficiency and folate deficiency, B12 treatment should be started before folate treatment.
If he's not taking folate supplements and his folate result is within normal range, still worth asking doctor (maybe local pharmacist) if he would benefit from taking a low dose of folate with RDA (Recommended Daily Amount).
Has vitamin D been checked?
Also common for people here to also have thyroid issues.
Might be worth putting any thyroid results on Thyroid UK forum along with an outline of story with his permission.
In UK, doctors often only test TSH but there are other useful thyroid tests.
If it's not dietary, I would expect GP to test for PA and Coeliac disease, two auto-immune conditions that can lead to B12 deficiency. There are many other possible causes.
2) NICE CKS Anaemia - B12 and Folate deficiency - published some years ago.
There are differences in guidance compared to new NICE guideline.
3) BSH Cobalamin and Folate guideline - published 2014
4) Try to track down local B12 deficiency guideline used by his ICB (Integrated Care Board) in England ( Health Board in Wales/Scotland).
If you can't find local guideline online, best bet is probably to submit a FOI (Freedom of Information) request to ICB/Health Board asking which B12 deficiency guidelines they use and for a link to or copy of them.
I left detailed information in my replies on thread below which may be of interest. I included links to help UK forum members who are struggling to get adequate treatment eg UK B12 documents.
There are many threads on this forum that mention older/elderly people with b12 deficiency.
Click on Posts tab (top left of screen on computer) and search posts with term "elderly" or "dementia" to find threads that might be relevant.
Some of the stories may be upsetting to read.
There was a thread in last couple of years where I and others commented on watching elderly parents deteriorate and how we now know it was very likely they had B12 deficiency.
I am so pleased your Dad has people to look out for him.
I found interesting articles when I did a general online search for "B12 deficiency elderly uk" and "B12 deficiency elderly Ireland".
Your dad and mum are lucky to have you as you seem so caring and switched on.
I experienced very similar to your dad and it took me about 4-5 months to have more normal times instead of feeling odd. Rest is important to allow the nerves to heal but we all try to run before we can walk.
I totally get your frustration with your mum’s pedantic corrections but try to let that go as she is probably stressed too and that’s her relief valve.
it’s important to recognise that this recovery is a journey of small steps and small wins that eventually will become normality again.
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Please help! At a loss with my dad's symptoms and GP
At my wits end
Looking for guidance 
Ongoing complaint Advice 
