B12 level of 93

[Formidablelady]

My daughter has just been given her result for B12 and its 93. I was just wondering if this is quite low. She has a range of sypmtoms, including extreme fatigue, palpitations, numbnes and pins and needles. The doctor has suggested 1 injection a week for 6 weeks but this goes against the NICE and BNF guidelines. Any suggestions?

[Formidablelady]

Intrinsic factor was okay. Dr has put it down to diet but she eats healthily and is not a vegan or vegitarean. There is a family history of pernicious anaemia.

[Galixie in reply to Formidablelady]

It helps to find out what the reference range of the test is. For example, if her result is 93 and the reference range is 211-911, then 93 would be clearly very deficient. Without knowing the reference range it is hard to tell how deficient she is, relatively speaking.

I will say, however, that 93 does indeed sound very low.

The intrinsic factor antibody test is not all that reliable. Roughly half of people with PA test negative for intrinsic factor antibodies. The test is only useful when the result is positive as that means it is almost certainly a case of PA. Having a negative test result does not rule out having PA.

Determining the cause of a B12 deficiency is difficult. With the exception of deficiency caused by diet, which can be treated with oral supplements, the treatment for all other causes is the same; injections of B12.

Have your daughter keep a logbook of her meals. You can use that to prove to the doctor that her deficiency isn't diet related. Then you can attempt to tackle the incorrect loading doses that you were offered and try to push for her injections to be based on the return of her symptoms rather than on some arbitrary timeline that doesn't work for everyone. Having a family history of PA does put her at higher risk for having it too.

If her doctor is still not convinced it is PA, ask them to test for other causes of B12 deficiency such as celiac disease, crohns, or h.pylori. But make sure that, whether they are going to do additional testing or not, she will get treatment for the deficiency as well. Don't fall into the trap of 'We'll test for some other causes first, and then we'll treat'. They should be able to treat the deficiency now even if they also do other testing.

[Gambit62 Administrator]

Was it serum B12 or active B12 test? 93 is definitely deficient for a serum B12 test - whether units are ng/L or pmol/L but would be a good result on the active B12 test.

As doctor is treating her sounds as if it probably is serum result in which case is very low.

Are you based in the UK - NICE and BCSH standards only apply in the UK. Even then they are only guidelines - there can be local guidelines in different counties and GPs aren't necessarily aware of them.

Think Galixie has covered just about everything else

[clivealive Forum Support]

Your daughter may need to have her Folate level checked Formidablelady

[Foggyme Administrator]

Hi formidablelady. Hello and welcome.

I have some tips that might help you with your GP but I'm unable to leave a reply tonight (sorry for that). I have a hospital appointment tomorrow morning but will try to leave something for you tomorrow afternoon.

It would help me to make a more focused reply if you are able to leave the reference range for your daughter's blood results, before then. If you don't have if you can ring the receptionist at the surgery and she will be able to look on the blood results form and get it for you.

I have to say that a level of 93 does sound very low and I do think that because of your daughter's neurological symptoms she does need a much more intensive regime of B12 injections (6 x loading doses on alternate days and then an injection every other day, until no further improvement - perhaps for many months).

Sorry I'm not able to say more at the moment. In the meantime, here's a link to a post I recently replied to about a similar issue. The poster had a B12 level of 211 and your daughter's is much lower than that. While some of the information may not be relevant to you, plenty of it is...so some things for you to consider to get you started.

Here's the link: healthunlocked.com/pasoc/po...

I'll leave suggestions on how to try deal with your GP tomorrow.

For now, take care....👍

P.s it would also help if you could say what other blood tests you daughter has had - and add the results and reference ranges if you have them

[Formidablelady]

Thank you all so much for your replies. We do live in the UK so I was hoping to mention the BNF and NICE guidelines to him. I will pop in the doctors today and get a printout of all the results. I think it is a great idea for her to keep track of her meals. I will tell her to do that. Thanks Foggyme will look forward to your input.

[Formidablelady]

Just been to doctors.

Serum vitamin B12 93ng/L . 150-620ng/L

Serum Folate 16.4ug/L. 3.10-19.90ug/L

Body mass index. 20.5 kg/m2

Weight. 63.05kg

I don't have the iron levels but they were reported to be normal this time. Although she has been previously treated for low iron as well. Interestingly her B12 was previously 123ng/L but they thought it was the iron deficiency dragging it down.

[Foggyme Administrator]

Thanks for posting these formidable lady...just wanted you to know I've seen them....reply pending 😄

[Foggyme Administrator]

So...based on the reference ranges above, your daughter has severe B12 deficiency. And she has neurological symptoms. She does indeed need a much more intensive regime of B12 injections (6 x loading doses on alternate days and then an injection every other day, until no further improvement - perhaps for many months). This treatment regime is advised by all the guidelines and in the second item down in the BNF (which you are familiar with). Your GP might not be.

One problem with the treatment guidelines in the BNF is that they refer to the treatment of PA - it does not make clear that the treatment of PA is actually the treatment of the B12 deficiency it causes - and many GP's do not know this.

Whether or not your daughter actually has PA is a moot point in terms of treatment - the treatment of PA and B12 deficency (which can have other causes) is the same - B12 injections. The first thing you can discuss with your GP.

I'm going to leave you some links at the bottom of this reply - they will contain evidence that you can present to your GP when you request this treatment. The first thing you can look for is the UKNEQAS B12 Treatment Alert. This instructs medics to treat B12 deficency immediately when neurological symtpoms are present (with the neurological regime outlined above). What's interesting here is that the alert refers to instances where B12 levels are within 'normal' range. It should not be beyond the wit of your GP to realise that this is even more vital when neurological symtpoms exist in the presence of a proven severe vitamin B12 deficiency.

So...your daughter certainly needs B12 injections - and she needs them quickly because of her neurological symptoms.

I think it's unlikely that a B12 level this low is caused by problems with diet...it's more likely to be caused by absorption problems, a fact perhaps underpinned by the fact that your daughter has previously been treated for 'low iron' - again, this speaks to a possible absorption problem. Again, the fact that your daughter's serum B12 is now down from 123 (a definite proven deficiency) to the ridiculously low level of 93 may indicate that her store of B12 is simply, inevitably, running out (as would be the case with PA or an absorption problem). Problems with iron (iron deficency anaemia) does not impact on B12 levels, as your GP seems to assume.

Next - as Galixie says above, your family history of PA means that it's more likely that your daughter will develop this also....and a negative IF test does not rule out the possibility that she has this...and your GP should be testing to rule out all possible causes of B12 deficency (whilst not ruling out the possibility of PA).

I'm wondering about the iron levels being reported as 'normal' this time? GP's often think that bumping along the bottom of the reference range is 'normal' - well, it's not good enough for people with B12 deficency. Might be worth asking for a copy of those results.

Also - wondering if your GP has done a full blood count (FBC). If he has and is looking for evidence of macrocytic anaemia (what he may expect to find in PA), he may fail to take into account that iron deficency aneamia reduces the size of red blood cells (the cells become microcytic) and will 'mask' the presence of the macrocytic anaemia usually associated with B12 deficency. So...if he is using this as evidence that your daughter does not have PA, the he is using a mistaken assumption.

People with B12 deficency often (almost always) have absorption problems, which can cause other vitamin deficiencies. Another common deficency is vitamin D deficiency - good idea to ask for this to be tested - lack of sufficient vitamin D can make you feel very ill.

Also worth asking for ferritin to be checked (perhaps again?) as this is one marker for iron deficency anaemia, which is likely to reoccur in the presence of absorption problems. As your daughter has known problems with low iron, it would be usually for a GP to run a full iron panel (serum iron, saturation, transferrin etc) as this gives a full picture of true iron status in the body. Ask,your GP,to do a full iron panel.

Another argument to help with your GP. 30% of people who present with B12 deficency and neurological symptoms do not have macrocytic anaemia or a confirmed diagnosis of PA - these tend to show themselves later in the disease process - their absence should not be used as a reason to reduce or withhold treatment for B12 deficiency, in accordance with the guidelines. And as you know, the treatment your GP propose is not in line with any of the current guidelines anyway...and needs to be challenged.

One of the problems here is that most GP's don't really understand PA or B12 deficiency. Forum members find that the best way to deal with this is to become knowledgable about all things B12 deficent so that they can help their GP's to help them.

In the links below, you'll find lots of information about PA, B12 deficency, diagnostic and treatment protocols and plenty of information to 'debunk' some of the odd notions GP's seem to have about B12 deficency. Including the one's relating to treatment that appear to be held by your GP!

It's a good idea to go through all the information, highlight where it's particularly relevant to your daughter's case and take this evidence along to present to your GP. Also make a bullet point list of the issues you want to discuss so that it keeps you on track. Make a double appointment if necessary (plenty of time for appropriate and proper discussion). Present the UKNEQAS treatment alert and and request the neurological regime of treatment first - then your other supporting evidence, if necessary).

It would also be a good idea to take another adult with you if you can - GP's are often more attentive and less hostile if there is another adult witness present. If this person can read your evidence and step in to support you, if necessary - even better.

And something to use last if nothing else works (or after initial mention of the UKNEQAS Alert if you feel that you're going to be rushed out of the surgery 😖).

Go to the PAS website, look in the library section and print out the leaflet called subacute degeneration of the spinal cord (if you're not a member look for it on the Internet). This document describes what can potentially happen if B12 deficency is under treated in the early stages. I'm certainly not suggesting that your daughter has this - or trying to frighten you. GP's are woefully ignorant about the neurological havoc that B12 deficency can wreak on the body and seeing (and reading) this document should serve to sharpen his / her mind a tadge. It's probably the thing that is most likely to 'encourage' your GP to treat your daughter's B12 deficency with appropriate seriousness - and give her the treatment she needs.

Finally, I do think that you daughter needs treatment as quickly as possible. If I was you I'd make an urgent appointment to see your GP, arm yourself with evidence from the links below, and go prepared to argue for appropriate treatment. As you rightly recognise, she is not currently receiving this.

If this is not forthcoming please post again for more advice on what to try next.

You might also like to think about joining the PAS. Martyn Hooper (the Chair of the Society) is usually only able to intervene with GP's on behalf of patients when a firm PA diagnosis is in place (because it's the PAS 😄). However, he's always very keen to champion the cause when children are concerned and because of your family history of PA and you daughter's very low B12 levels, he may be able to offer the sort of help that we can't provide in this forum (very unfortunately).

Anyway, here's the links to evidence / information that may help:

Very best of luck, please let us know how you get on...and post as many question as you need too. Lots of people here who will pop along to help.

👍

LINKS TO INFORMATION AND GUIDELINES

b12researchgroup.wordpress.... (Serious Caution Note about the use of Oral and Sublingual B12 Supplements)

evidence.nhs.uk/formulary/b... (BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

pernicious-anaemia-society.... (PAS Symptom Checklist)

stichtingb12tekort.nl/weten... (BSH B12 Deficiency / PA Diagnostic Flowchart)

onlinelibrary.wiley.com/doi... (British Society Haematology (BSH) Guidelines: Treatment of B12 Deficiency and Folate Disorders)

onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord)

stichtingb12tekort.nl/weten... (Problems with Serum B12 Test)

stichtingb12tekort.nl/weten... (Testing B12 During Treatment)

stichtingb12tekort.nl/weten... (Misconceptions About B12 Deficiency – Good to Know Before Seeing GP)

stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)

stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)

P.s. It's also worth refereeing back to the link I gave you earlier - there might be some tips in there that I've forgotten to mention here.

[Formidablelady]

Wow thank you for such an informative, extensive reply. We went to the GP again today. We were seen by a trainee GP. They didn't ask if this was okay either. He said you could only have the loading doses if you were under a specialist and that GPs could only prescribe it weekly. We challenged him and he is now going to discuss it with another GP. He also dismissed the neurolgical symptoms as she didn't have them constantly even though she has them daily. I think they just look at her and because she is 21 and looks fit they don't seem to be taking it seriously. I am not sure if I said but she has also been treated for Vitamin D and iron deficiency anaemia. She eats a good balanced diet of fish, meat, salad, vegatables, cereals, fruit and carbs. Her weight is normal and she has no other medical problems apart from anxiety, panic attacks and mild asthma. We have a family history of hypothyroidism, type 2 diabetes, pernicious anaemia and depression.

[Foggyme Administrator in reply to Formidablelady]

Hi again formidablelady. Good grief what nonsense medics spout!

First..you don't have to see a specialist to have B12 injections prescribed (loading doses and the neurological regime (as outlined above). These can be prescribed by a GP...it's all in a book called the BNF which will be on the doctors desk - and in the guidelines I've given you links for above.

Second...you have A family history of autoimmune disease - of which Pernicious anaemia is one autoimmune condition. You daughter is more likely to develop this condition as autoimmune conditions tend to run in families. And good grief...there is enough in her clinical history and current symptoms for this to be something your GP should suspect immediately.

Does your GP know about the family history of autoimmune disease, and in particular, PA?

More...your daughter vitamin D and iron deficency anaemia - this coupled with her severe vitamin B12 deficency, means she most likely has absorption problems - so nothing to do with diet as your GP previously suggested....

Given your family history, her multiple deficiencies and, more importantly, her neurological symptoms, your GP should immediately suspect pernicious anaemia...and be testing her for it (but keep in mind what I say above about false negatives and still having PA). With her B12 levels, it would be usual to draw all bloods for any trsts and then immediately start on B12 injections.

I also note that the anxiety can also be a symptom of B12 deficency and the mild asthma may rather be the sort of breathing problems that can be a symptom of PA and the B12 deficency it causes (I was misdiagnosed with asthma, which subsequently turned out to be one of the symptoms of B12 deficency).

Such a casual dismissal of her obvious ongoing neurological symptoms is...well...ridiculous...and potential damaging to your daughter's long term neurological health. I would hazard a guess that he / she has no idea what the many neurological symptoms are - and no idea about the neurological havoc that B12 decency can wreak on the body.

I hope that this trainee discuss your daughter's case quickly and gets back to you PDQ (did he give you any idea when this would happen?).

If I was you, I think I wouldn't wait...I'd make an urgent appointment with another GP.

And if you have no luck with that GP, politely ask to see another GP...or the senior GP partner...before you leave the surgery.

I suggest you get a copy of her serum B12 levels before you go in next time and if they won't treat her - with the neurological regime - as per the guidelines - simply tell them that you are going to go to A & E, present the UKNEQAS B12 Treatment Alert (as discussed below) and request treatment there.

Based on your daughter's b12 results, any doctor who knows anything about B12 deficency would take all the necessary blood tests there and then, and begin treatment with B12 injections immediately.

Print off the UKNEQAS B12 treatment alert (in one of the links above) and take it to the surgery with you. This alert instructs doctors to treat B12 deficency immediately if neurological symptoms are present to prevent the development of potential irreversible neurological damage. Interestingly, this alert relates to cases where neurological symptoms are present - but B12 levels are within 'normal' limits. It should not be beyond the wit of any GP to realise that this is even more vital in cases where there is a proven severe B12 deficiency. If your GP won't read it (some won't) then insist on reading it out aloud (beat have a copy for yourself too, just in case).

In short...your daughter's B12 levels are so low that you cannot afford to wait for doctors to mess around due to ill-informed notions about B12 deficiency (hence the suggestion that you go straight to A & E - and take the UKNEQAS Alert with you 😄).

Sorry if all this sounds a bit direct...we see this kind of treatment (or non-treatment) so often and it does make me quite frustrated on behalf of those who are struggling...and it always seems harder to bear when a young person is involved...perhaps because I'm a mum too.

It's also late and I'm rushing to get something to you before I fall asleep, in the hope that you'll see it in time to get back to your GP tomorrow 😄.

Please do put up a new post if you need more help....or if you need help to make the right arguments / find the right evidence to show your GP. But oh...if all this was not so necessary.

Take care, let us know how it goes...and shout if you need more help.

👍

[Formidablelady]

Result! GP rang back today. He said he looked at NICE guidelines and BNF and said that once a week was okay but he had decided to give her the injections alternate days until she had no further symptoms. Persistance and having evidence pays off. We still don't know what caused it though. I am a bit scared when h levels go back up they will take her off it.

[Foggyme Administrator in reply to Formidablelady]

Hi Formidablelady. That's fantastic news. I'm so pleased...for you both 😄.

Some GP's do try to reduce or stop B12 when levels go up - which is a complete nonsense since levels are always high after an injection (they're supposed to be) and tell you nothing about the efficacy of treatment. The only thing that can do that is symptoms...still having symtpoms or symtpoms coming back - need more B12. And the best bit...we have lots of information to use for evidence of that as well.

But...the chances are that in backing down and treating the neurological symptoms properly they've become a little more aware of the treatment for B12 deficiency, and that bodes well for the future.

Cause? Because of the family history of PA, her other absorption problems and severe B12 deficiency, I think it's more thank likely that it will prove to be PA (certainly antibody PA - as per the BSCH diagnostic flowchart). (Martyn Hooper, Chair of the PAS tested negative twice before he had a positive result.

I have to confess I was really pleased to see your news as I did wonder how you were getting on...it's so good to hear something positive - it always give us all a lift 😄.

Good luck and I hope your daughter begins to feel better soon. Put up a new post and let us know how things are going and certainly ask if you need any help,or advice in the future. Lot of lovely folks here to pop along and help.

Take care and well done 💉💉💉😄

[Formidablelady in reply to Foggyme]

Its all thanks to you. You gave me everything I needed to challenge the GP. They can't argue with the guidelines. Thank-you so much ❤️

[Foggyme Administrator in reply to Formidablelady]

Thanks formidablelady...Just happy to be able to help...but oh that it were not necessary...

It was you who put that evidence together and used it to such good affect, so very well done 👍😄.

Challenging doctors is not an easy task, as all here know only to well 😖.

So again...well done you 😄 xx