Hello, I am new to the group. My elderly mum has recently had first course of six Vitamin B12 injections and I have recently started back on prescription Iron tablets for anaemia.
I need to ask, what is the right levels of Vitamin B 12 my mum shld have and what levels are considered low pls? I am going to ask what her levels actually were pre injections and I want to be more Informed on what is a low level, a very low level and normal levels pls
It would be a great help if you could obtain the blood test results together with the lab margins. If you pop the results on here other members will be able to advise you.
OK, I have not been given that information I will ask for it when we see the GP late July. They don't physically give us results, just told on the phone by a receptionist her levels were low. Yes, that's our UK NHS for you
Most of our Health issues would have been solved only if the GP's would have time to talk to their patients. If you go to the surgery than they should be able to give you the print. That's what i do. I show my blood reports to my doctor in India and he gives me the right advise. Here at NHS they wouldn't go deep. They won't even tell you something is borderline.
My b12 is at 325 and i have symptoms so googled and found out on one article that above 400 is considered optimum.
Hi SNOW_DROP,
Welcome to the forum.
What's considered normal range, below range, above range can vary across UK.
Each ICB (Integrated Care Board ) in England or Health Board in Wales/Scotland is likely to have different ranges for serum B12.
In some ways I think it's better to go by symptoms rather than serum (total) B12 levels.
It's possible to have severe B12 deficiency symptoms with a serum B12 result that is well within range...I know from personal experience.
Link about "What to do next" if B12 deficiency suspected or recently diagnosed.
b12deficiency.info/what-to-...
If your mum has neurological symptoms eg tingling, pins and needles, memory problems, dizziness and there are many others, my understanding is that she should be on the pattern "For people with neurological symptoms" outlined in link below.
cks.nice.org.uk/topics/anae...
NICE CKS (Clinical Knowledge Summary) B12 deficiency and Folate deficiency
cks.nice.org.uk/topics/anae...
Unhappy with Treatment (UK info)?
How to write letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Link above has letter templates covering various situations linked to B12 deficiency.
Other deficiencies
Has she got recent results for folate, ferritin (and other iron tests) and Vitamin D?
Forum members often report these deficiencies as well as B12.
It's also quite common for people here to have thyroid problems. One of you might want to post any thyroid results on Thyroid UK on HU.
Local B12 deficiency guidelines
I'd urge you to find out the local B12 deficiency guidelines that her ICB (Integrated Care Board) in England or Health Board in Wales/Scotland are using, as her GP is likely to refer to these.
These should include the serum B12 range for her area of UK.
List of ICBs in England
nhs.uk/nhs-services/find-yo...
If you can't find them online or by searching forum posts here then best bet is to submit a FOI (Freedom of Information) request to her ICB or Health Board asking what B12 deficiency guidelines are used locally and for a link to or copy of them.
Some local B12 deficiency guidelines are not helpful. See blog post below.
b12deficiency.info/gloucest...
I'm pleased your mum has you looking out for her as there have been elderly UK forum members struggling to get adequate treatment.
What does her GP think has caused her low B12 levels?
Has your mum been tested for PA and Coeliac disease?
These are two auto-immune conditions that can lead to B12 deficiency.
If she has a PA or Coeliac diagnosis, may be worth other blood relatives getting tested as both conditions can run in families.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
PAS membership is separate to membership of this forum.
PAS support groups in UK
pernicious-anaemia-society....
Testing for PA
pernicious-anaemia-society....
NICE guidelines Coeliac disease suggest that anyone with unexplained B12, folate or iron deficiency should be tested.
More info on diagnosis of Coeliac disease on Coeliac UK website.
Two useful B12 books
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the former chair of PAS (Pernicious Anaemia Society).
Some of the treatment info needs updating in above book.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)
Very comprehensive with lots of case studies.
Misconceptions
Many UK forum members have met health professionals with a poor understanding of B12 deficiency.
Misconceptions about a B12 deficiency
(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)
stichtingb12tekort.nl/engli...
Diagnosis and Treatment Pitfalls
(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)
b12-institute.nl/en/diagnos...
Link to thread about Patient Safety, has useful links for those in UK having difficult health experiences.
healthunlocked.com/pasoc/po...
I'm not medically trained just someone who suffered from unrecognised and untreated B12 deficiency for years.
I watched an elderly relative fade away into dementia with symptoms I now realise were consistent with B12 deficiency.
There is more I could post, just let me know if you'd like me to.
That is AMAZING information. Thk you I have only just skimmed through it as I am working atm. She was diagnosed with mild-moderate dementia with Alzheimers disease in Jan 2021. I am so angry her vitamin b12 levels were not tested sooner as I feel the nerve damage has already been done. She has been showing symptoms, especially the burning pain in her right lower leg for 18 mths-2 yrs and the pain has been just been dismissed witb advice to massage the area
Hi again,
I experienced dementia type symptoms in my late thirties including
1) memory problems and forgetfulness, brainfog
2) struggled to get the right words out (nominal aphasia)
3) went blank sometimes when in the middle of a sentence
4) lost the ability to do mental arithmetic
5) did strange things such as putting crisps in the freezer and boiling the kettle without any water in it
I had many other neurological symptoms but had to resort to treating myself as NHS at that time refused to treat me.
There is always hope for some improvement if she gets adequate treatment but it's likely that you'll have to fight for her to get adequate treatment.
If she is likely to lose capacity to act for herself then she and the family may want to look into POA (Power of Attorney). There are two types. One deals with health matters and the other deals with financial matters.
POA
Demyelination
B12 deficiency may cause damage to the myelin layer around nerves and in severe cases the brain and spinal cord can be affected.
I do feel that elderly people can be at a disadvantage. Symptoms are often put down to old age when there may be a treatable condition.
Martyn Hooper has blogged about elderly people with PA and B12 deficiency struggling to get diagnosed and adequate treatment.
martynhooper.com/2017/07/01...
martynhooper.com/2017/06/22...
There are cases of people being misdiagnosed with dementia when they are actually suffering from B12 deficiency.
I searched online for "b12 deficiency misdiagnosis dementia" and "white matter brain lesions b12 deficiency" and "B12 deficiency elderly uk".
Some details were upsetting to read.
The two B12 books I mention in one of my other posts discuss dementia and B12 deficiency.
Misdiagnosis of B12 deficiency as other conditions
b12deficiency.info/misdiagn...
Another interesting B12 book
"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
Films and videos about PA and B12 deficiency
pernicious-anaemia-society....
Help for GPs
Might be worth pointing these out to your mum's GPs.
1)PAS (Pernicious Anaemia Society) have a page for health professionals
pernicious-anaemia-society....
GPs can join PAS as associate members. No charge.
2) Club B12
This is a group of researchers, health professionals and other interested people who are looking into B12.
They have regular zoom meetings and a conference about B12 later this year in Cambridge, UK.
3) There was a conference about B12 deficiency in clinical practice in Rotterdam in June 2023.
"The Bookends of Life: pregnancy, childhood, adults, & the elderly"
4) Below is one of the best articles on B12 deficiency I've read (in my personal opinion).
It's aimed at researchers and health professionals so may have details that could be upsetting.
B12 article from Mayo Clinic in US
Probably a good one to pass on to her GP.
The Many Faces of Cobalamin (Vitamin B12) Deficiency
ncbi.nlm.nih.gov/pmc/articl...
Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.
"Neuropsychiatric symptoms of B12 deficiency: not just in the elderly and often without anaemia"
From a Dutch B12 website with English articles.
stichtingb12tekort.nl/engli...
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Some of the info will be specific to UK.
healthunlocked.com/pasoc/po...
This video on Alzheimers may be of interest to you, SNOW_DROP.
Welcome to the group!
Sleepybunny gave great info.
Once on injections, you need to go by symptoms, not by levels. Neurological symptoms require continued every other day injections.
Does she have diagnosed pernicious anemia or 'just low b12' ?
Low b12
Has the same symptoms as PA.
PA is the most common cause but a diagnosis is difficult to get.
If its dietary I.e a vegan diet b12 supplements are needed daily
It's always good to have a baseline so you know what's s 'normal ' level of B12 is for you , as this varies alot
I will never know what level I was well on .
So don't have a baseline
But very ill with first ever b12 level being tested at:
106( 200-900)
Realised for SNOW_DROP
Get a copy of your results.
If its been done before you can compare
Some are 'in range ' but are b12 deficient as not reaching cell level .
My mother and daughter need b12 injections . So does run in families
All we have been told is vitamin B12 deficiency...no other information has been shared 😕
In the UK you have a legal right to get a copy of all your results. GP's re ceptionist should be able to print them off for you. But i don't know if you will run into privacy/power of attorney issues.
Read and reread Sleepybunny's links and please come back & ask more questions any time you need to.
I'm sorry you're all dealing with this.
I do have POA, thanks for that. I Will email reception now and ask for a print out her B12 results
NHS link about accessing medical records in UK
nhs.uk/using-the-nhs/about-...
Accessing someone else's medical records
There isn't a real answer to your questions. People vary a lot in what is the right level of B12 for them and the normal range is extremely large.
The test that is used to detect B12 deficiency - serum B12 - is really a test that can be used to monitor falling levels of B12 over time and detect an absorption problem (or a developing deficiency) rather than one that can be applied back to an individual to say whether they are deficient or not.
After injections its difficult, if not impossible, to use the serum B12 levels to find out if someone has sufficient B12 because after an injection the amounts in the blood will be off the measurable scale and then fall overtime - although the average time taken to fall to the lowest point in the range is on average 2 months - that again is an average and people vary considerably - for some it will take years (though that doesn't mean that they will be okay.
It would be much more useful to be keeping diaries of symptoms and how they change over time as a way of monitoring how your mother is doing.
You can find a list of symptoms here:
pernicious-anaemia-society....
and there is a lot more information on the limitations of tests for B12 deficiency in this document, which recommends injections for life rather than continual testing
Concise links that contain footnotes to medical journals -
stichtingb12tekort.nl/engli...
stichtingb12tekort.nl/engli...
stichtingb12tekort.nl/engli...
Please be aware that some doctors erroneously check levels and adversely believe that once someone is back in normal range, all good. It is not. Does not work that way unless it is 💯 dietary. Most is an absorption issue which means supplementation for life, no off & on.
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Also note b12 can be have different types of measurement. And ranges. And then there is serum and active as well
I was 103 pmol/l serum level at diagnosis, and pretty close to becoming bedridden at that point, with about 32 symptoms which had gone on for years. Nerve pain was unbearable at times.
Vitamin b12 vitamin b9 anaemia
Vitamin B12 deficient
DAILY VITAMIN B12 ORAL SPRAY
B12 levels on sublingual hydroxycobalamin.
Vitamin b12 not being treated 
