Feeling blindsided by low B12 diagnosis

[pastanorma]

DM (80) has been struggling with cognitive decline, depression/anxiety and physical symptoms (digestive problems, insomnia, fatigue, vision and balance issues) for about 6 or 7 years. Physically, she's had endless tests which have returned nothing concrete. Cognitively, she's gone from a bit of repetitiveness and word-loss to a stage where she's pretty much confused all the time, little sense of time, can't do anything herself (can barely make a cup.of tea), doesn't know her age or date of birth, can't remember GCs names etc.

We've been baffled for ages why she hasn't had a dementia diagnosis, in spite of endless medical appointments, two memory tests etc. Anyway, she's just had a neuro opthalmology appointment (because of visual/dizziness problems) and we were again expecting a dementia diagnosis, but instead it's returned a diagnosis of low B12, confirmed by elevated MMA. Of course, I've been googling, and it seems that all her multiple cognitive and physical problems are possible symptoms of low B12.

I'm a bit horrified that all these years of horrible decline could possibly have been caused by something treatable - and also that once symptoms have been going over for more than a year or two, they're much less likely to be reversible.

Does anyone have experience of this? Is it really possible that such a big decline could have been caused by low B12? Does anyone have any positive/negative stories of treatment?

I’m early 60s and feel like your DM. Yes low B12 can and does cause those symptoms. There’s a couple of excellent FB groups you can check in with - Vitamin B12 Wake Up is one - which have heaps of info.

my b12 is 124 and I feel physically appalling and mentally broken. Starting injections next week apparently they make a huge difference.

I have rage at how B12 is overlooked as a possible diagnosis for all kinds of symptoms, and because GPs now only allow one symptom per session the chances of it being flagged is low. I went with dreadful insomnia - the worst of my clutch of other symptoms, and was prescribed sleeping pills. I then paid for some tests via Thriva (terrific if you can afford them) which flagged up in red! “Urgent! See your GP as you are dangerously low in B12” or wtte.

your poor mum should feel better once treatment starts.

My mum ended up in hospital 2 years ago, she was in a terrible state as she was following the caveman diet,which was basically meat for all meals. She has a will of iron and refused to eat anything else and lost loads of weight. She even had intermittent loss of sight, confusion, her skin was in a terrible state too. Once in hospital she she had vit B IV drips, gained a stone in two weeks by eating properly and was like a different person.

Get onto NICE guidance and do not be fobbed off with oral B12 or standard injections.

Treatment protocol if there is neurological involvement is injections every other day until no further improvement.

Accept nothing less!!

Also get ferritin and folate checked as they are all cofactors. If any gastric issues get coeliac test as that is a common cause of sub-optimal nutrient absorption.

It is really shameful how many women are fobbed off with this topic, and made to feel like low mood, tired all the time and being forgetful are just normal.

My friend was referred to a neurologist and had a brain scan before they finally realised it was b12 deficiency. She was so unwell and it was completely overlooked.
Hopefully the good news is your mum will be feeling much better soon.

I manage a dementia assessment service and we won't accept referrals without B12 levels checked and treated if indicated exactly because of this! Hope the treatment has your mum feeling better OP.

Thanks all, really helpful. I know that her B12 level has been checked before, and it's still only showing as 'low normal', but what the report seems to indicate is that the MMA levels are a better indicator that her B12 is too low. Her folate levels are showing as normal. She's had coeliac tests as well as colonoscopy and gastroscopy which have shown nothing wrong.

She's got a GP appt coming up to discuss results, so hopefully they'll get her on B12 sharpish. My worry is that she wouldn't tolerate very regular injections - she's really very confused and anxious now, and any appointment, however routine, is a massive source of stress.

Of course, it's entirely possible that she has both dementia and low B12. The doctor has also told her to cut down on alcohol, as he thinks that's contributing to the issues.

It's all just so hard. She and my dad are both pretty resistant to lifestyle changes of any kind, and although dad is more compos mentis, he's not as sharp as he was. I live a longish distance away and work full time so can't attend appointments with them (I'm not sure they'd let me anyway). It makes it very hard to both advocate for her and also to support her in living more healthily.

Hopefully it is just related to the B12 deficiency, but my mother is also B12 deficient and needs injections four times a year, and she also has dementia, diagnosed six years ago. We found that in the early stages, if she was late getting a jab, her dementia symptoms seemed to worsen, along with fatigue etc. It's very common in older people, no matter how good their diet - the body just cannot absorb B12 via the stomach, so supplements are useless. I wouldn't rule out dementia either, as you say.

At 80 low vitamin B12 is likely to be an also-ran rather the cause. It sounds like it’s only recently dipped.

Essentially, shes just getting old. Most people over the age of 70 have some degree of cerebral small vessel disease which is a key cause of cognitive decline and also balance disorders and vision problems.

Did the neuro ophthalmologist do a brain scan?

No, she had an MRI about two years ago which showed signs of 'mild' small vessel disease and atrophy, but there was no follow up, and they haven't suggested another MRI. (The last doctor she saw, about her digestive issues, said that she shouldn't have further invasive tests without extensive counselling, as she's not able to give informed consent and gets very agitated. I don't know if that's connected to them not recommending an MRI now though.)

Her cognitive symptoms are really quite significant (corresponding broadly to Stage 5 on those example dementia timelines - ie she isn't incontinent and can still wash and dress, but is pretty much unable to do anything else herself, and is very depressed and confused, struggles to follow a conversation etc). She just seems to have appointment after appointment without any conclusion, and they just refer her on to see somebody else, with the same outcome. She's got a separate referral outstanding for a neurology appointment, but they gave her an 'urgent' appointment for that in three months' time and have subsequently cancelled it - waiting for a new date.

I'm not under any illusions that she's going to be cured of anything - I'd just like somebody to perhaps conclude that she has dementia (if that's the case) and then focus on helping her to live well, rather than more endless appointments which go nowhere. I appreciate that she's 80 - but looking at others I know of the same age or older, her cognitive issues seem much more severe than is typical for her age in a person without dementia.

A lot can happen in 2 years. You could ask to be referred to a geriatrician or a neurologist specialising in dementia to get a definitive answer. With my father we went private as the NHS wait time was unacceptably long.