Hi I wonder if anyone here can help. I've looked online and can find no answers. I need B12 injections periodically and my blood test results have always given me a number on the axis graph to show if within range or out of range. My mother just recently had a load of blood tests and when the B12 and Folate ones came back there was no number for either and the "comments box" on the graph was bang on the horizontal axis. Everything else she was tested for had a number and the "dot" was black if within range and red if out of range. Can anyone explain to me what this B12/Folate reading means? Does it mean they couldn't do the tests? Or does it mean her B12/Folate is so low it's not producing even a 1 or 0? So confused. Her Ferritin came back out of range at 14 btw. Thank you.
Query about B12 and Folate blood test... - Pernicious Anaemi...
Query about B12 and Folate blood test result
This shows what I mean. Nothing in the comments box and no number on the axis. Folate the same.
Hi Endielle,
I’m really sorry I don’t know the answer to your question but I would book another appointment with the GP to ask whether repeat bloods were needed or to explain if those were actual results.
My own circumstances were the lab flagged my coeliac blood test which I was informed of in person by my GP (pre lockdown). But months later, it was a private neurologist (I have found them to be more thorough) that stated in a letter to my then GP that there was a mix up with my lupus blood test. I’d asked phlebotomist what bloods she was taking, (I write pretty much everything in a diary) I was unaware I had been tested for lupus and if there had been a mix up, why hadn’t my NHS GP called me back. 🤷♀️
Best wishes
Looking at the results I would say both folic and b12 were low, I would deffinately phone your doctor ! The red dot indicates out of range.
Its possible the test had a cut off point which means it can identify a deficient reading but not with precision. Do you know what type of test it is?
Hi,
I am not medically trained, just someone who suffered unrecognised B12 deficiency for many years.
I suggest you spend a week or so sifting through info below, a bit at a time, so it's not so overwhelming.
Some of the info will be specific to UK and some links I post may have details that could be upsetting.
My eyesight is not great so couldn't read all the details on test result you've posted but it looks to me that
serum (total) B12 result says less than 143 ng/L (might say less than 148)
< means less than
I'm assuming the 143 (or 148) in bold type is the actual result.
serum folate result says less than 2.2 ug/L
If her serum B12 is below 143 and the folate is below 2.2 that seems very low to me.
The red dot indicates the result is out of range as far as I can tell.
Can you ring/contact the GP to explain the results to you?
If your mum has capacity to act for herself, she may need to give you written permission to act on her behalf.
If her results really are <143 ng/L for serum B12 and <2.2 ug/L for folate I would expect treatment to start very soon.
In a person with both B12 deficiency and folate deficiency, treatment for B12 deficiency would usually be started first.
Treating folate deficiency without treating a co-existing B12 deficiency can increase the risk of neurological problems.
Link about "What to do next" if B12 deficiency suspected or recently diagnosed.
b12deficiency.info/what-to-...
There are many possible causes of low B12 and low folate.
Do any of the following seem likely?
Risk Factors for PA and B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
Next link about causes is from a Dutch B12 website.
b12-institute.nl/en/causes-...
Does she have symptoms consistent with B12 deficiency (and folate deficiency)?
Symptoms of B12 Deficiency (folate deficiency also mentioned)
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/...
cks.nice.org.uk/topics/anae...
b12-institute.nl/en/symptom... (B12 Institute Netherlands)
Has she got results for ferritin (or other iron results) and Vitamin D. Forum members often report deficiencies in these. Full Blood Count (FBC) results would be useful as well.
Just spotted in your post that her ferritin was out of range at 14.
Low B12 and low folate can lead to enlarged red blood cells (called macrocytosis).
Low iron can lead to small red blood cells (called microcytosis).
In someone with iron, folate and B12 deficiencies it can be very confusing trying to understand blood test results as the effects of B12/folate deficiencies on red blood cells can mask effects of iron deficiency on red blood cells and vice versa.
Some GPs may think that PA is not possible if enlarged red blood cells are not present.
50% of people with PA do not have enlarged red blood cells (macrocytosis).
Ferritin is a form of stored iron in the body.
Has she been tested for PA (Pernicious Anaemia) and Coeliac disease?
If PA is suspected, worth joining and talking to
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
Testing for PA
pernicious-anaemia-society....
PAS website has useful leaflets and a page for health professionals that might be worth passing on to GP.
pernicious-anaemia-society....
pernicious-anaemia-society....
Guidelines below indicate that anyone with unexplained B12, folate or iron deficiency should be tested for coeliac disease. Check GP follows recommended diagnostic process (some don't).
NICE guidelines Coeliac Disease
nice.org.uk/guidance/ng20/c...
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.
Keep letters brief, to the point and polite. Harder to ignore a letter in my opinion. Keep copies of any communication with GPs in case needed in future.
UK B12 documents
NHS article about B12 and folate deficiency (simply written, lacks detail in my opinion)
nhs.uk/conditions/vitamin-b...
BSH Cobalamin and Folate Guidelines (aimed at health professionals)
b-s-h.org.uk/guidelines/gui...
Summary of BSH Cobalamin and Folate Guidelines (main points from above document)
pernicious-anaemia-society....
Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.
stichtingb12tekort.nl/engli...
Next link outlines two patterns of treatment for B12 deficiency in UK
1) for those without neuro symptoms
2) for those WITH neuro symptoms
BNF Hydroxocobalamin
bnf.nice.org.uk/drug/hydrox...
NICE CKS B12 deficiency and folate deficiency
cks.nice.org.uk/topics/anae...
There are currently new NICE guidelines in development for Pernicious Anaemia and B12 deficiency. These should be published in 2023.
nice.org.uk/guidance/indeve...
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment (over 40 pages).
BNF Folic Acid
bnf.nice.org.uk/drug/folic-...
Cautions section in above link says that folic acid should never be given on its own for PA (Pernicious Anaemia) or other megaloblastic anaemias caused by Vit B12 deficiency as this may lead to SACD, subacute combined degeneration of the spinal cord.
Each CCG (Clinical Commissioning Board/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency. Might be worth tracking down the local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links.
Some local guidelines have been posted on forum so try a search of forum posts using terms "local guidelines" or try an internet search using "name of CCG/Health Board B12 deficiency guidelines" or submit a FOI (Freedom of Information) request to CCG/Health board asking for access to or a copy of local B12 deficiency guidelines.
If you want to know why I suggest getting hold of the local guidelines, read blog post below.
b12deficiency.info/gloucest...
Referrals
If she has neurological symptoms, I would expect her to be referred to
1) a neurologist
2) a haematologist
3) a gastro enterologist (if gut symptoms present)
Next link outlines when someone with B12 deficiency/folate deficiency should be referred to a haematologist and gastro enterologist.
NICE when to refer B12 deficient patient
cks.nice.org.uk/topics/anae...
GP maybe reluctant to refer. If GP won't refer to haematologist then worth asking them to write to a local haematologist for advice on treatment.
Warning .....
There are too many on the forum who have found their GPs, specialist doctors and other health professionals lack understanding of B12 deficiency.
In elderly people, I think the symptoms of B12 deficiency can sometimes be put down to old age, sometimes with severe consequences.
B12 article from Mayo Clinic in US (aimed at researchers and health professionals)
ncbi.nlm.nih.gov/pmc/articl...
Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.
Misconceptions about a B12 deficiency
(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)
stichtingb12tekort.nl/engli...
Blog post that mentions misconceptions about B12 deficiency
b12deficiency.info/a-b12-se...
BNF treatment guidance in UK has changed since this blog post was written.
Diagnosis and Treatment Pitfalls(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)
b12-institute.nl/en/diagnos...
Links to forum threads where I left other detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
I hope your mum gets the treatment she needs.
Some UK members on the forum resort to treating themselves as a last resort if NHS treatment is not enough for their needs.
thanks for all of this. yes the rbc was out of range and the ferritin. both were low. rbc was 3.67 red dot, ferritin 14 red dot. haemoglobin low at 109 red dot, MCHC low at 307 red dot, rdw high at 19.3 red dot, mpv low at 7.1 red dot, estimated gfr low at 78 red dot, vitamin d low at 39.6 red dot. This is why the folic acid and B12 not having a number or black or red dot has confused us. GP surgery only has access so far to RBC and Ferritin results for some reason, we have them all on "patients knows best" website. Still waiting on result of a stool sample. Mum has Crohn's disease. She has to have iron infusions a lot but I just don't know if she will get what she may need B12 and folic acid wise while there is actually no result of numbers on the graph (as pictured above). Will speak to gp about it as and when they actually can see the results.
B12 deficiency and folate deficiency are known potential consequences of Crohn's disease.
Having an auto immune condition increases the chances of developing further auto-immune conditions. I would still expect her doctors to test for PA and Coeliac (both auto immune conditions that can lead to B12 deficiency).
Vital that B12 deficiency is treated as soon as possible.
If treatment is denied, delayed or inadequate, there is an increased risk of permanent neurological damage including damage to spinal cord.
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....
Blog post from Martyn Hooper's blog, mentions SACD
martynhooper.com/2010/09/21...
GUTS UK charity
Crohn's & Colitis UK charity
Endielle, looking at the details the horizontal scale appears to be time and because you only have one result it's showing the average of one result which is the test result.
Basically the graph is pretty meaningless as a presentation for a single result.
If you had more than one result it would presumably show various dots across the screen around a line that marked the average or plotted a trend which would be useful.
Is the box below the result of clicking on the comment on the line, giving you the result of the test?
The red diamond seems to indicate that your results for both folate and B12 are outside the normal range and both appear to be low
Scientist, not medic.
I did these tests for many years, and was involved in the final reports too. These reports look confusing, to say the least. Whilst it may be said that a picture paints a thousand words, these don't. In fact, the graph adds nothing, just 'clutter'. Fortunately, they've supplied the numbers which show both B12 and folate are low. Personally, I'd be going to the lab that did them and asking them what exactly does this graph show?! [But not necessarily in such polite terms]. But that would be me; I don't recommend it as a general approach! The information we can provide from labs can be very helpful, but it needs to be delivered in a form that the requesting physician can understand. These could easily be ignored.
Thank you. Yes an actual number would have been useful. Had numbers for everything else other than fa and b12 results on graphs. All done with same samples. Mum thinks they didnt have enough blood. Could that be the case?
I wondered if the B12 test and folate tests they used can accurately measure results that are well below the range. Maybe the results are really low and they could only record them on their system as below range.
Below the numbers that are in bold (which I think are the actual results) it mentions a range but my eyesight is too dodgy to read the numbers.
I would try to contact the lab if the GP surgery is unable to explain the graphs.
Gp called yesterday and booked her in for 1 x b12 injection. They dont know the actual result either so they are hoping 1 injection will be enough. Gastro are booking her in for iron infusions. Dont know about folic acid yet as gp said to talk to gastro about that..
Endielle,
I would question the surgery about more than 1 x b12 injection ... she should have loading doses x 6
"booked her in for 1 x b12 injection"
I'm not medically trained but that doesn't sound enough to me.
The link below outlines two patterns of treatment for B12 deficiency in UK
1) for those without neuro symptoms
2) for those WITH neuro symptoms
BNF Hydroxocobalamin
bnf.nice.org.uk/drug/hydrox...
If she has neuro symptoms then my understanding is that she should be on the treatment pattern in above link for those with "neurological involvement".
Don't let her doctors fob her off with inadequate treatment.
If she has neuro symptoms, you may need to point out to GP that the BNF recommends a loading injection every other day for as long as symptoms continue to improve. This could mean weeks even months of every other day loading injections followed by a maintenance injection every 2 months.
If no neuro symptoms present, the pattern is 6 loading injections over 2 weeks followed by a maintenance injection every 2 - 3 months.
The GP can find this info in the online BNF (British National Formulary) or in their BNF book in Chapter 9 Section 1.2
There are several of us on here, including myself, who have watched a parent deteriorate over many years and only realised when we had B12 deficiency symptoms ourselves that our parent's symptoms were suggestive of B12 deficiency.
Make sure her GP is aware of any symptoms she has that are suggestive of B12 deficiency (and folate deficiency). Maybe include a list of symptoms in any letter to GP especially all neuro symptoms and definitely any symptoms affecting spinal area.
Point 5 in this letter writing link is about being under treated for B12 deficiency with neuro symptoms present. There is are letter templates in the link that people can base their own letters to GP on.
b12deficiency.info/b12-writ...
I was lucky to avoid dementia and damage to my spinal cord as NHS refused to treat me when my symptoms were at their worst, over 40 typical symptoms....including many neurological problems.
I developed dementia type symptoms in my 30s and had pins and needles in my spine. I do think I have some permanent damage although relatively mild in my case. There are forum members on here who have developed SACD, sub acute combined degeneration of the spinal cord because diagnosis took too long or treatment was inadequate.
Did you manage to find out what the actual numbers were for her B12 and folate results?
I don't know how old your mum is but thought you might be interested in these blog posts about older people with B12 deficiency.
b12deficiency.info/a-tale-o...
b12deficiency.info/christin...
If you or your mum join PAS (Pernicious Anaemia Society) there may be some helpful info they can pass on.
Membership of PAS is separate to membership of this forum.
The person who runs B12 Deficiency Info website has helped some people on this forum.
I'd urge you to find the local guidelines on treatment/diagnosis of B12 deficiency for your mum's CCG (Clinical Commissioning Board) or Health Board. Sometimes local guidelines can be very different to national guidelines.
Are they going to test her for PA and Coeliac disease?
I wonder if they think that the B12 deficiency etc is all due to Crohn's.
It's possible to have more than one cause of B12 deficiency at the same time.
PA requires life long treatment. There are other causes of B12 deficiency besides PA that require life long treatment.
Has she had any surgery linked to Crohn's?
B12 is absorbed in the terminal ileum (part of gut) and damage to terminal ileum is likely to affect B12 absorption.
NICE guidelines Crohn's disease
NICE CKS (Clinical Knowledge Summary) Crohn's disease
If you look at the section on "Complications" in above link it lists B12 deficiency as a potential complication.
Crohn's and Colitis UK article
Click on tab for "nutritional treatments and supplements".
crohnsandcolitis.org.uk/abo...
I hope you will update the forum at some point.
If you do, it may be best to start a new thread as responses on older threads often get missed.
Good luck to you and your mum.
Mum is 76 next month and dx with crohns disease has to have entyvio infusions every 8 weeks. No they dont know the actual b12 and folic numbers. We see her gastro prof on 30th so will ask him to test her those again. He is also to organise her iron infusions due to low ferritin. She has just started vit d3 tabs too now. Thank you. B12 injection with gp practice nurse is on mon. Will ask then why only 1 injection.
"Will ask then why only 1 injection"
Have you considered putting this query about her treatment into a letter?
Maybe ask
1)what the CCGs guidelines say about treatment for B12 deficiency
2) nurse/GP to check their copy of BNF Chapter 9 section 1.2
(have a copy of the info in your bag)
Things that are said in a consultation are sometimes forgotten or not recorded whereas I feel a letter is harder to ignore.
More about writing letters to GP
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. 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.
I included a request in letters that a copy of letter was filed with medical notes.
My understanding is in UK, letters to GPs are supposed to be filed with medical notes so are 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 some of the following
relevant test results
date of diagnosis and diagnosing doctor
relevant family/personal medical history
relevant extracts from UK B12 documents eg BNF/NICE/BSH
requests for referrals to relevant specialists eg
neurologists
haematologists
gastro enterologists
but keep the letter short as I think GPs more likely to read it all.
Keep copies of any communication sent or received eg copies of letters and screenshots of messages if appropriate.
I sadly think that older people with B12 deficiency are at a distinct disadvantage as I feel that many B12 deficiency symptoms are put down to getting older.
I think you and your mum should push for her to be also tested for PA and Coeliac disease.
Is her diet B12 rich?
If GP won't budge from just one B12 injection then maybe you could include in a letter to GP and copied to practice manager, info about SACD, sub acute combined degeneration of the spinal cord. See PAS leaflet on SACD.
I am not saying she has SACD, I'm not medically trained but I am saying that her GP and any other doctors she has contact with should be aware that SACD is a possible consequence of B12 deficiency especially if treatment is denied, delayed or inadequate.
It may make the GPs/other doctors take more notice and to think very carefully about how to treat her.
Folate deficiency can also lead to SACD but I think this is much rarer and her GPs may not be aware of this.
If GPs say that giving just one injection is what the guidelines say then I suggest you ask for a copy of the guidelines.
If they drag their feet giving you a copy then you could submit a FOI (Freedom of Information) request to the GP practice and to the CCG/Health board asking for access to or a copy of local B12 deficiency guidelines. For info on how to do this, go to GP practice website or to CCG website and put FOI or Freedom of Information into search box which should take you to relevant page.
CAB NHS Complaints
citizensadvice.org.uk/healt...
If she is not getting the recommended level of treatment then it's worth talking to her local MP and devolved representative if in Wales/Scotland/NI.
Is she being given folate treatment?
Vital that if a patient is getting folate treatment, any co-existing B12 deficiency is also treated. B12 treatment needs to start first (and not just one B12 injection in my personal opinion).
BNF Folic Acid
bnf.nice.org.uk/drug/folic-...
See Cautions section in above link which says that folic acid should never be given on its own for PA (Pernicious Anaemia) or other megaloblastic anaemias caused by Vit B12 deficiency as this may lead to SACD, subacute combined degeneration of the spinal cord.
I watched my mother fade away into dementia with symptoms that I can clearly see now were very likely to be B12 deficiency. I wished I had known all I know now years ago, maybe I could have saved my mum.
Some health professionals do not realise how serious B12 deficiency can be, sometimes the attitude is "it's just a vitamin deficiency". See links about misconceptions in my other reply. B12 deficiency can affect every system in the body....I believe it is sometimes called combined systems disease in USA.
The word Pernicious in PA means deadly, fatal which PA used to be in days before treatment was available.
If your mum is in danger of losing capacity to act for herself then she may want to consider taking out Power of Attorney. There are two types, one for financial matters and one for health matters. See link below.
Other blog posts about B12 deficiency in the elderly
b12deficiency.info/a-year-t...
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