Pernicious Anaemia Society

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Any advice on caring for someone with b12 deficiency?

I hope it's ok to post here - I don't have b12 deficiency/PA myself, but am a carer for my 98 year-old Grandmother who does.

Her symptoms are confusion, extreme irritability, depression, mood swings, tiredness, reduced mobility, paranoia, diarrhoea, loss of appetite, indigestion/excess acid, tinnitus, tremors, numbness in hands and feet, and cramps in hands.

She had the loading doses by injection on alternate days in November and her first 12-weekly booster shot on 31st January. She's also taking 5mg folic acid and thyroxine, daily.

Since starting treatment, I'd say she definitely has more energy and her confusion is less severe, but like a lot of you posting on here, overall the treatment seems to be making her feel worse, not better.

I'm finding it really difficult to take care of her properly, particularly with her mood swings and paranoia. For example, if I ask her what she'd like to eat, her reply is "nothing. I want to starve to death." If I just bring her food, she refuses to eat it because it's not what she wants or I'm "trying to control" her. If I suggest she has a bath or wash her hair, she gets offended that I'm calling her "dirty." And this is repeated throughout the day with every task you can think of: dressing, washing, eating, laundry, housework, gardening....

I was wondering if any of you had felt this way - like people were attacking or controlling you, when in reality they were trying to help - and can offer any advice on how you would have liked to have been spoken to, or what your loved ones did that made you feel better?

Any suggestions would be very much appreciated. I feel like I've tried everything and we're just going round in circles at the moment.

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31 Replies

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It can be a real problem. A friend once asked me about PA. She'd been researching online and my name cropped up. Her father had been diagnosed but was refusing all treatment. She was at her wits end. She finally managed to get him to accept the injections and, after a while, his mental state improved.

I can see it from her father's side as well. I had no idea how horrible I was before getting treated. And if anybody tried to tell me I thought they were out to get me.

The first thing to do is to get her injections to be given more often. The doctor should try every 8 weeks for a start. There is no good reason why they shouldn't.

After that, it's all about patience.

Thanks for your reply. Weirdly, there's been very little resistance from her at all to taking the pills and having the injections (she's actually refused her folic acid today, but I think that was down to bad timing on my part as she was already in a bad mood when I tried to give it to her.) It's daily tasks that are the problem, no matter how fun or gentle or polite I try to make it, everything makes her angry. Even things she enjoys, like if I try to put her favourite music on, she just screams "No! No! No!" The only thing that stops it escalating is if I walk away and leave her alone, but then whatever I was trying to get done stays undone!

I'll try talking to the GPs about getting the jabs more frequently and see what they say.

I had to push to geg my mums injections reinstated. She said she didng need them.

She is 91.

She didnt hey az bad as you describe but going in that direction. Also try high dose cynocobalamin b12 tablets incase he can absorb anythi g while you trying to sort more injections.

Paranoia is awful. I had ygst before treatment was aware j was being ridiculous ag times but it felt very real.

I can sniff out lies at the best of times.

Hope you get more b12 into her.

SHe may have a level if dementia as well.

My mum mich improved but apparently nothing to do with the b12 injection. !!

Thanks for your reply. Glad your mum improved in the end.

I did wonder about dementia and that was what I thought it must be when she first started acting so strangely last year. But the GP did the tests where you have to count backwards and remember an address and all that stuff and she passed with flying colours. Apparently the memory clinic won't even accept a referral if b12 levels are low anyway, so this has to be sorted first.

GP said b12 tablets weren't an option because she can't absorb through digestion, but I guess they wouldn't do any harm either.

My mother was diagnosed with dementia at 95. I wonder now if it was B12D. I was lucky that she was always fine with me, but she played up the carers at the nursing home. She had a 'calming injection' every ? weeks and was fine with the carers then. {I told her it was a flu injection so she stopped fussing about having it] I wonder if an injection of that sort when your mother had her B12 one would help her to be less cantankerous.

I can see how B12 deficiency and dementia could easily be confused. I've read in a few places that there seems to be a link between them, but more research needs to be done on whether one causes the other or they're mutually aggravating, or just both coincidently suffered by elderly people in large numbers.

I'm not sure about the idea of her being given a tranquilliser or anything like that (even though it would probably make my life a lot easier!) She's always been a very spirited person and it just wouldn't be 'her.' Please don't think I'm criticising the injections given to your mother - different approaches are right for different people.

It must have been very mild, it just stopped her wanting to fight [hit] the carers. When I suggested she have the 'flu' jab she said "I don't know why I am fighting, I don't mind injections.

Now that I have B12 D and know more about it, I wonder if my mother's problem was B12D too.

Well if your Gp said that ,hopefully they will agree to more injections !!

Here's hoping!

Yes those symptoms of your Grandmothers are definitely B12 deficiency /Pernicious Anaemia. She obviously needs B12 injections more regularly ( I need them weekly ) I believe , now that I’ve experienced PA. , and recognise the symptoms, , that my mother died from P.A. I’m afraid at the end she had some form of dementia . It is important that your grandmother gets more regular injections. It will make such a huge difference to both your lives

If she gets the right treatment , she will be a different person.

I’m wondering if she really needs take that huge dose of folic acid daily . There are nasty side effects from overdosing folic acid, but not from massive doses of B12 .

I need a B12 injection every week , which I self inject , to keep symptoms at bay.

What are the side effects of overdosing on folic acid - I'd been trying to look them up, following a high level in a blood test, and had given up. 🙄

All I could find was the problem of folate supplementation masking a B12 deficiency.

5 mg daily was mentioned . 400mcg is the recommended daily dose . 5 mg is OK for a short while -say 1 month . But 5 mg is really excessive and can have side effects over time like stomach cramps , diarrhea,, sleep disorders , rash ,, irritability, confusion ,behaviour changes ,nausea,etc

It’s OK if large amounts of Vitamin B9 is taken in food as folate . That will not have those side effects , as it is metabolised in a different way to folic acid .

Thank you so much. I've had so many problems with my pancreas stuff and bacterial and viral infections since September that I've been been feeling really rough and it's been much harder to manage all my background deficiency problems which I usually do on symptoms, day to day.

I'd accidentally allowed my folate to drop to the point my eyesight had gone fuzzy (as well as my tongue splitting) so that morning I'd been loading myself with folate to clear it so I could see to drive to get my blood test done and ward off the chance of vertigo, hence the "high" blood result. More recently I've needed less methylfolate (upper limit symptoms on that are easy - headache!) so I've been switching back to more folic acid to keep the folate deficiency at bay but not overdo the methyl! So I can work out where to pitch it I needed to be reminded what high levels could cause but couldn't focus well enough to find the right papers! You are always a star.

I know that Drs regularly use 5mg daily for 3 months to correct a deficiency, with longer term therapy used to correct depletion of folate by other prescription drugs, but, as you say, otherwise folate from food or 400mcg supplementation is usually enough so there's not much about it!

Once again, thank you! I've actually got a face to face with a Dr later to see if we can do something more to improve my current ills!

All the best to you! x

All the best to you too dear deniseinmilden👍

Thanks for your reply. I'll try asking the GP if it's possible to get B12 injections more frequently and will also check on the folic acid dosage - I think as Denise said below, it's just this level for 3 months, then another set of blood tests to see what's what. I'd planned to call today, but she's thrown herself on the floor during a meltdown and hurt her hip. 111 advised going to A&E, which she agreed to on the phone with them, but when it's come down to actually getting up and going in the car she's refusing to go, shouting, screaming, throwing things, so just waiting for a call back from a clinician now to see if they can assess her over the phone.

I have recently become a carer for a lady with similar problems to your Grandmother and it can be incredibly difficult, can't it! She too has passed a couple of dementia tests - but has far worse symptoms than others I know who have been diagnosed with Alzheimers.

A genetically unrelated uncle of mine had a number of similar symptoms and as his daughter is a top ICU nurse she tried everything to get a diagnosis - to no avail. It seems that sometimes the mental health teams just don't join up the obvious! My Aunt had become impossible before my cousin could get any sort of help or recognition of the situation. She has developed similar heart defect and deficiency symptoms that I and others in our family have but its still an uphill battle to get any diagnosis.

While the B12 and folate will help significantly, especially if she is able to get enough, I doubt it is the whole picture. Just to add, has she had blood tests for potassium, magnesium, iron and vitamin D? Deficiencies of all these can affect the effectiveness of the B12 and folate and also produce many of the same symptoms in their own right.

Because caring is so challenging there is a lot of online support available for you on many sites for everything from care agencies to Tena incontinence products, as well as the more obvious dementia charity sites. I know it's hard to find the time to look but it can be really helpful to know that there are lots of others who are also struggling with such negative behaviour.

You might find some useful information on the following site.

aegisliving.com/resource-ce...

You aren't alone and she is a very lucky lady to have someone so kind and caring as you!

Thank you for your reply and kind words. Sorry you are in a similar situation, although as you say it's good to know I'm not alone! I think because of the isolation of lockdown there have been times where I wonder if I'm making it all up or if I really am this horrible tyrant my grandma sees me as.

Thank you for the link. I know there's a lot of support information out there, but a lot of the dementia advice just doesn't seem to apply (for example 'don't ask what they want, just give a choice between two things' she will always say "neither." Or 'put on their favourite music at stressful times' just makes her angrier.) One thing that seemed to work was submissive body language, until she worked out that when I was crouched on the floor to talk to her she could just kick me or hit me with her stick. My grandfather had Alzheimer's and his behaviour was never anywhere near as extreme as this.

I've also tried the Carers UK, Age UK and Dementia Society helplines all of which just told me that they couldn't give any specific advice because she was suicidal and to go back to her GP. My local carers advice line just rings and rings and no one answers, which I guess is a covid thing.

I got her some Tena pads and she ripped up the box and tried to flush all the pads down the toilet!

In her last set of blood tests iron and vitamin D were normal. I don't know if they tested for potassium or magnesium. The GP never gives/shows me the test results, just summarises them. I'll remember to ask next time.

I'll try to talk to the GP again on Monday (see my reply to Wedgwood above for why it didn't happen today!) and hopefully get the frequency of her B12 injections up.

Thanks again for the advice!

The feeling of "is it them.... Or me???" is only all too familiar! You are wonderful and it's definitely "them"!

The sort of dementia I'm thinking of makes the person so convinced of what they are saying and plausible when they talk to others about shallow things that it is easier to doubt yourself!

"You're bullying me, you've done X, you've caused me to be/feel/do X, anyone who criticises you is right, you're too perfect, you're always right, you can't do it differently to make it OK because I'm just being awkward to you, put it on the side... don't put it there!!, I didn’t tell you to do it, you're arguing with me, I can do it (but won't do it or wrecks it if you hand it over), etc, etc ".

All I can do when she is being abusive is to smile and agree with her and just say "I might be all sorts of things but I'm always kind and want the best for you" or "I'm sorry you feel this but I'm still calm and friendly". As you say, the only way is to change the subject.

They are determined to promote themselves over you until you can't help but doubt yourself!

I'm very lucky because my lady's son lives with her and I only help her while he's at work so I get his anguished calls about how head-spinning being with someone like that is, for a sense of balance.

It's a jolly harsh thing to say and I'm not advocating anything other than patient care for these poor people but maybe we have evolved over the generations to push people away if we have these sorts of problems so that we hasten our end and reduce our suffering. It is only with modern ideals, and cures for other health issues, that we live so long that dementia is more prevalent and caring is more possible/necessary.

You are definitely, definitely not alone! Well done for trying to access help - I'm just so disappointed for you that you haven't found anything much.

"You're bullying me, you've done X, you've caused me to be/feel/do X, anyone who criticises you is right, you're too perfect, you're always right, you can't do it differently to make it OK because I'm just being awkward to you, put it on the side... don't put it there!!, I didn’t tell you to do it, you're arguing with me, I can do it (but won't do it or wrecks it if you hand it over), etc, etc ".

This description is almost exactly what she's like! I always get "you think you're so clever" and a constant shifting of the goalposts, telling me she wants something done a certain way, then yelling at me for doing it that way; saying she wants to do something herself, then blaming me when she struggles or can't do it at all.

Sounds like your lady's son is very lucky to have you sharing in the care work. It's very hard being the only one here and even though yesterday was really difficult - she fully kicked off at my friend who had come to help get her to a&e, at two different nurses on 111 and at the paramedics we eventually had to call to take her in - that was the first time she'd been at her worst in front of other people and seeing their reactions to it made me realise she IS being completely unreasonable and I'm not imagining it! Thankfully the xray was normal, no broken bones, but she seems to be in a tremendous amount of pain, so is not a happy camper today..... and of course doesn't want any help and is refusing to take any pain medication.

I agree that there's a certain amount of trying to push me away (even for my own good) and if she was a wild animal she would probably have crept off into the woods to die away from the pack, but according to the GP and all the tests done at the hospital yesterday in terms of physical health she's in better condition than most 60 year olds and likely has a few years left to live. I just want to find a way to make those years as comfortable and dignified as they can be.

The GP said the memory clinic won't accept a referral until her b12 levels are sorted, but I'm definitely going to mention her behaviour yesterday when I call the surgery on Monday. Hopefully 111 will have recordings of the calls so they can hear for themselves.

Thank you for your reply - I've had a bit of a morning of it... Nothing like you but even still it is lovely to hear your appreciation of the situation.

It doesn't usually get to me but I have so many health problems of my own that I don't get any chance for much life beyond this... So even though it isn't anywhere near as bad for me as you, I'm being totally out of character and would almost be feeling sorry for myself if it wasn't for your lovely, understanding reply - you've put things back in perspective and made me feel appreciated!

It is frustrating when you can't get the help you need and I think you are going about everything in exactly the right way. Getting the 111 conversation recordings is a genius idea. Most people will understand and support you but it only takes one to be less than helpful to really undermine your already very fragile confidence, doesn't it.

I am so impressed by your ability to keep your head and cope, especially as it's almost all on your own.

No matter how much you know you have done all the right things, you can't help but doubt yourself sometimes, can you?

Well at least you know that I don't doubt you in any way and you have my full support and backing!

Sorry to hear you had a bad morning. It must add an extra layer of difficulty when you have your own medical problems to contend with too. I realise I'm very lucky to have my health (more or less!)

After an awful day and night yesterday with my grandma in a lot of pain, she's finally taken some pain relief and has been much calmer today. I hope your day took a similar trajectory.

Thank you for your supportive words. As you say, it's very easy to feel that if only you'd handled things differently, they might have gone better - and yes, sometimes that's true, nobody's perfect! But I don't think there was anything I could have done on Friday that would have stopped her melting down.

Hello Bulldog3000 - I do hope you can get your grandmother more frequent injections. I had to fight to get them 3 weekly to help with the awful way I felt which included many of the symptoms you refer to. It's easy for drs to label b12 deficiency as dementia - but the severe cognitive issues, extreme fatigue and the peripheral neuropathy you describe can be helped a great deal with frequent injections. I was beginning to feel that life was not worthwhile until the 3 weekly injections started to work. You and you grandmother deserve help. Good luck

Thanks for your reply and really glad to hear the injections have started working for you. I'm going to call the GP on Monday and push for more regular injections. The GP was on to the B12 deficiency straight away, never even suggested dementia as a possibility. It was me who suspected dementia at first because despite being a vegetarian for over 20 years and knowing that b12 deficiency was something I needed to avoid I didn't realise the symptoms could be anywhere near as severe as this!

I'm not convinced that B12 symptoms can be that bad and while the Dr is brilliant to see the B12 problem and do something about it, I think you are right.

With my deficiencies I'd got to the point that I could barely walk or talk and I too would have rather been dead - but in a helpless, listless way: I certainly didn't have any fight left in me and couldn't think straight enough to argue with anyone or be aggressive. If you said anything to me - either slightly good or bad - I generally dissolved into tears rather than anything and lots of people report this.

I belong to a B12 Facebook group and most people on there are meek and mild and easily belittled, gentle folk. In contrast I have also joined a Chronic Pancreatitis Facebook group and the people there are a lot more robust, despite also experiencing similar difficulties.

Crabbiness, and, from what I have witnessed from a contributor here, aggression, is more a feature of milder deficiency, but I doubt it is the problem in your grandmother's case, even if it contributes to it.

B12d more usually causes self anxiousness and self deprecation.

Maybe I'm reading my own experiences into your case, but I don't think so: your Grandmother sounds just like a more advanced version of my lady and my friend's dad who both have OK levels of B12. Jo's Dad has vascular dementia and my lady almost certainly does too.

I think you are right and your Grandmother has one of the less common and harder to diagnose forms of dementia. Another friend's mother went from being a lovely little lady to being completely destructive and aggressive. She had to be admitted to a specialist care home because she was dangerous at times. Eventually they managed to get a diagnosis of a type of dementia that is rarely heard of. I don't sense your Grandmother has that type of dementia but I included it to illustrate that there are a lot of different dementia diagnoses and Alzheimers is only the main one. Because this is better known than most, if the symptoms don't quite fit the Alzheimers profile, it can be very hard to get any dementia diagnosis, let alone the right one!

mayoclinic.org/diseases-con...

Has some of the main groups but I guess you know them better than most people do by now!

It's hard. I was carer for my Mum who had it, though cognitively she wasn't too bad. But she had all the rest. And it's mentally draining on the carer.

In the end I just used to do the jobs that needed doing without any discussion and then going and sitting and having a chat when times were more relaxed.

Keep a fresh water by her. Water plants she could see while sitting as it bugged her. And then just listen.

Can you just take her food she finds appetising and leave it there within reach e.g cut up slices of apple, banana, hard boiled eggs.

5 mg folic acid is a lot. If she's only on 12 weekly B12 it may not be the right balance. I'd be tempted to drop to 400 mcg folic and add in a b complex spray for her mouth that includes some b12 and the other Bs like B1, which are also needed for mood.

In the end if she does choose not to eat then that may be the way of it.

Oh and on the music front. When B12 is low it can be like autism and sensory issues. I can't tolerate loud noise when I'm low so I wouldn't put it on unless she asks.

Does she watch tv? Have any devices?

I used to just say hello, do the kitchen, laundry, make some food, then go and sit quietly and if she was really bad and upsetting me, I'd head off.

Thanks for your reply and sorry you and your Mum were going through this too. That's more or less the level I'm at at the moment. If she's in a bad mood, I sit in the kitchen to give her some space and try to do as many jobs as possible after she's gone to bed to avoid any chance of confrontation.

A plate of snacks works maybe 6 times out of 10. The other times she will throw them all on the floor or go into her bedroom and refuse to come out until I take the food away. She's also a fussy eater (always has been) so no fruit, no eggs, no cheese. Basically the only snack foods she likes are cakes, biscuits and bread, so not very nutritious but better than nothing!

She does watch TV, although sometimes it's another thing that makes her angry. I think it's a combination of not being able to follow the plot/keep track of who's who and - as you said with the music - sensory overload.

I'll mention the folic acid to the GP - everyone seems to agree it's too high!

Hi,

From personal experience the best thing anyone could have done for me was to say

I believe you (when I was describing symptoms)

I will support you

We'll fight together to get you the best treatment possible.

I suggest reading as much as you can about B12 deficiency as sadly there are too many doctors in my personal opinion whose knowledge of B12 deficiency is lacking.

"had the loading doses by injection on alternate days in November and her first 12-weekly booster shot on 31st January. She's also taking 5mg folic acid and thyroxine, daily."

The symptoms you mention include neurological symptoms eg numbness, tinnitus, confusion...

Does the GP have a list of all her neuro symptoms?

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

cks.nice.org.uk/topics/anae...

Symptoms of Peripheral Neuropathy (damage to peripheral nerves)

nhs.uk/conditions/periphera...

Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.

If you're in UK she does not appear to be on the recommended level of treatment for those with neuro symptoms. See links below.

I wonder if she is being under treated?

Some people report symptoms worsening for a while when they first start treatment.

UK B12 documents

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

BNF Hydroxycobalamin

bnf.nice.org.uk/drug/hydrox...

See section on treatment for those with "neurological involvement" in above link.

NICE CKS

cks.nice.org.uk/anaemia-b12...

BNF Folic Acid

bnf.nice.org.uk/drug/folic-...

Folate Deficiency

patient.info/doctor/folate-...

How long has she been taking folate treatment?

Starting folate treatment before treating a co-existing b12 deficiency can lead to neurological problems.

Local Guidelines

Worth tracking down the local guidelines for treatment/diagnosis of B12 deficiency in your area of UK and comparing them with BSH. BNF and NICE CKS links.

Have you considered joining and talking to PAS who can offer support and info?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Has she been tested for PA? Coeliac disease?

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.

Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.

CAB NHS Complaints

citizensadvice.org.uk/healt...

Local MPs/devolved representatives may be worth talking to if struggling to get appropriate treatment.

B12 Deficiency and Mental Health

B12 deficiency can lead to mood swings, psychosis, depression, hallucinations, aggression and a whole host of other psychiatric symptoms. Sadly it can sometimes lead to suicidal ideation.

B12 deficiency can lead to dementia type symptoms, I say this from personal experience although thankfully these symptoms improved once I got treatment.

Articles/blog posts about B12 deficiency and mental health

b12deficiency.info/b12-and-...

martynhooper.com/2017/01/22...

stichtingb12tekort.nl/engli...

I've written some very detailed replies with more B12 info eg causes of b12 deficiency, symptoms, B12 books, B12 articles, hints about how to deal with unhelpful GPs etc that you may find of interest.

See links below.

healthunlocked.com/pasoc/po...

I am not medically trained.

I sincerely hope you and your gran get the help and support you both need.

Thanks for such a detailed reply and all the links.

I've certainly always believed and supported her and the main struggle has not been with her GP who spotted the b12 problem straight away, but in getting her to accept that something was wrong and needed treatment.

The GPs have certainly been made aware of all her symptoms, whether they keep them as a specific list, I don't know. I'm going to call the surgery on Monday, so will be sure to stress that she has neurological issues - great to know that these should be treated differently.

She only started taking folic acid in February, I think the doctor felt the loading doses plus 1 booster had raised the b12 level enough to start addressing the folate, but I will query this as well.

The GP said it definitely wasn't PA (they tested for intrinsic factor) she was just not absorbing any b12 due to her age.

The mental health/dementia have definitely been the most prominent symptoms with her, so I'll have a proper read through all this material, thank you. And very cheering to know they can potentially be reversed.

Hi,

"I'm going to call the surgery on Monday, so will be sure to stress that she has neurological issues - great to know that these should be treated differently. "

1) UK recommended treatment pattern for B12 deficiency without neuro symptoms is ...

6 B12 loading jabs over 2 weeks followed by a jab every 2 or 3 months

2) UK recommended treatment pattern for B12 deficiency WITH neuro symptoms is ...

A B12 loading jab every other day for as long as symptoms continue to improve then it's a jab every 2 months.

There is no set time limit for how long the every other day loading jabs can continue for if patient has neuro symptoms. Could be for weeks even months.

Your gran appears to have been put on the first pattern when my understanding (I'm not medically trained) is that she should be on second pattern as neurological symptoms are present.

Mild dietary B12 deficiency is sometimes treated with low dose oral b12 tablets. More severe dietary deficiency with neuro symptoms should be treated with B12 jabs.

See BNF, BSH and NICE CKS links in other reply for more info on UK treatment and as I suggested before, try to track down the local guidelines for her area of UK.

Links to some local UK guidelines.

Notts Area Prescribing Committee

nottsapc.nhs.uk/media/1330/...

Review date Nov 2021

Bury CCG

buryccg.nhs.uk/download/doc...

Published 2015 so must be due for a review.

Hull and East Riding Presribing Committee

hey.nhs.uk/wp/wp-content/up...

Review date April 2021

Walsall CCG

walsallccg.nhs.uk/wp-conten...

Review August 2022

Cambridge and Peterborough CCG

cambridgeshireandpeterborou...

Guidelines to be reviewed March 2021.

Herefordshire and Worcestershire CCG

Guidelines for the Management of Vitamin B12 Deficiency in Primary Care

herefordshireandworcestersh...

Review date July 2023

I sincerely hope she is not in the area mentioned in blog post below which has a poor reputation on this forum for how patients with b12 deficiency are treated.

b12deficiency.info/blog/202...

If you know the name of your gran's CCG or health board it should be possible to find the local guidelines on treating B12 deficiency.

CCGs England

nhs.uk/servicedirectories/p...

Health Boards Wales

wales.nhs.uk/ourservices/di...

Health Boards Scotland

scot.nhs.uk/organisations/

Health Boards Northern Ireland

online.hscni.net/hospitals/...

If you can't find the local guidelines, you could

1) Submit a FOI (Freedom of Information) request to CCG or perhaps GP surgery asking for a copy of local guidelines on management of b12 deficiency.

2) Ask local MP/devolved representative to help you track them down.

More about letters...

I recommend putting any queries about treatment/diagnosis into a brief, to the point, polite letter as harder to ignore.

It's my impression that sometimes info passed on verbally does not get recorded in GPs notes.

"GPs have certainly been made aware of all her symptoms, whether they keep them as a specific list, I don't know"

Perhaps a list of symptoms especially every neuro symptom could be included in any letter to GP?

Neurological symptoms associated with B12 deficiency can include the following....

tremors, tingling, numbness, pins and needles, burning sensations, insect crawling sensation, tinnitus, muscle twitches, muscle fasciculations, flickering eyelids, restless legs syndrome RLS, vertigo, clumsiness, dropping things, bumping into things, strange gait (unusual way of walking), word finding problems, confusion, migraine, balance issues, brainfog, proprioception problems (problems with awareness of body in space) ...

There are many other neuro symptoms that can be associated with b12 deficiency. See symptoms lists in my other reply.

Folate deficiency can also lead to neuro symptoms although my impression is that GPs are not always aware of this.

Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.

Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.

When a letter is sent to GP, worth including a request that GP practice sends written confirmation to letter writer that they have received letter.

It can be useful to have proof that a letter was received especially if there is a need for formal complaint in future.

I included a request in letters to GPs that a copy of letter was filed with medical notes.

My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so are therefore a record that an issue has been raised.

Useful to have a paper trail in case there is a need for a formal complaint over treatment in future.

Letters could contain relevant test results, date of diagnosis, brief family and personal medical history, extracts from UK B12 documents, requests for referrals to relevant specialists eg neurologists, haematologists, gastro enterologists.

Keep copies of any letters sent or received.

Link about writing a letter to GP if patient is under treated for B12 deficiency with neurological symptoms.

b12deficiency.info/b12-writ...

For more info see letter writing link in my other reply.

Retention of UK medical records

bma.org.uk/advice-and-suppo...

Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.

If you get proof of diagnosis eg positive test result/letter from specialist confirming diagnosis etc keep a copy in a safe place. It could be very useful in future if treatment is stopped.

Accessing Health Records (England)

nhs.uk/using-the-nhs/about-...

england.nhs.uk/contact-us/h...

patients-association.org.uk...

Power of Attorney

If your gran still has the mental capacity to make her own decisions then it may be possible for her to arrange power of attorney for health issues so someone can make decisions on her behalf if she loses capacity in the future.

gov.uk/power-of-attorney

"very cheering to know they can potentially be reversed"

Time is of the essence in treating B12 deficiency.

There is a window of opportunity where there is a chance for symptoms to improve but delay may lead to permanent neurological damage.

This is why it's so important to fight for right level of treatment.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord

pernicious-anaemia-society....

Oral Tablets

There is a move across country to put more patients onto oral tablets.

Cynical me thinks this is a cost cutting move as this is cheaper than giving injections.

B12 ampoules for injection are cheap (less than £2 per ampoule) but nurses' time to give injections is expensive.

My understanding (I'm not medically trained) of UK guidance on B12 treatment is that patients with B12 deficiency showing neuro symptoms should be on injections. Don't let them fob her off with oral tablets.

While I accept that there are members of this forum who can manage on oral tablets, most appear to find injections more effective.

If they try to put her onto oral tablets, these links may be of interest....

smw.ch/article/doi/smw.2017...

cochrane.org/CD004655/ENDOC...

pubmed.ncbi.nlm.nih.gov/295...

Oral Tablets (PAS news item)

pernicious-anaemia-society....

My understanding is that GPs cannot impose a major change in treatment unless a patient has given informed consent for the change.

As I understand it, this means that the GP should have discussed the pros and cons of changing to oral treatment with patient, made sure patient understood the issues and got the patient's agreement before treatment changed, having given them enough time to consider their decision.

Writing to someone to tell them their treatment has been changed does not count as giving informed consent.

A patient who "lacks capacity" cannot give informed consent.

If changing to oral tablets is part of a research/medical study then in most cases ethical approval is needed and majority of studies will need approval from an Ethics Committee.

Impact of Pandemic

If you feel her treatment has been affected by impact of pandemic, see links below.

pernicious-anaemia-society....

b12deficiency.info/covid-19/

b12deficiency.info/blog/

Blog posts about the elderly and B12 deficiency

(Some of these links contain upsetting details)

b12deficiency.info/blog/201...

martynhooper.com/2017/11/17...

martynhooper.com/2017/07/01...

martynhooper.com/2017/06/22...

martynhooper.com/2012/04/08...

Films about B12 deficiency

b12deficiency.info/films/

"The GP said it definitely wasn't PA (they tested for intrinsic factor) she was just not absorbing any b12 due to her age. "

As GP said it could be age related. I have read that acidity decreases in stomach as we age.

I hope your GP has not assumed that it isn't PA just because her Intrinsic Factor Antibody test result was negative. Sadly some UK GPs and specialists may not be aware that it is possible to have Antibody Negative PA.

See links below.

PA tests

Intrinsic Factor Antibody (IFA) test

labtestsonline.org/tests/in...

Parietal Cell Antibody (PCA) test

labtestsonline.org/tests/pa...

PCA is not recommended as a diagnostic test for PA in UK.

It is still possible to have PA with a negative result in IFA or PCA test.

About 50% of people with PA test negative on IFA test.

About 10% of people with PA test negative on PCA test.

Antibody Negative PA is mentioned in BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

and also mentioned in Martyn Hooper's book

"What You Need to Know About Pernicious Anaemia and B12 Deficiency"

BNF treatment info in above book is out of date. See BNF link in my other reply for up to date info.

Other B12 books I found useful

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies.

"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD

Thank you for all the information. There's a lot of stuff out there, so very helpful to have some recommendations of what's going to potentially be useful.

Rather than going in all guns blazing with CCG guidelines and letters of complaint, I'm inclined to start by updating the GPs with her lack of progress and give them an opportunity to reassess her treatment themselves. The original diagnosis and treatment was very forthcoming so I have no reason to think they'd suddenly change their attitude. I repeatedly told the nurses coming to give the injections that there was no, or only very little improvement, but I wonder if they weren't feeding this back to the doctors. She never really got to a point where she'd improved significantly with the loading doses, let alone stopped improving, so I think you're probably right: that phase of treatment should have gone on for longer.

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