B12 deficiency

[Rachel20]

Hi everyone. Just a quick question.I found out yesterday that I am b12 deficient.Before being tested an on seeing my private bloods (b12 54) I was told if it comes back low I may have to have injections.But I was prescribed folic acid tablets via txt message. My gp receptionist called and gp wants to see me about my other results but haven't and can't talk to the gp until my appointment in over 2 weeks time.I just wondered if anyone knew if pernicious anema would come out on my FBC bloods.Not sure what the gp has seen on my other bloods but surely I wouldn't of been prescribed folic acid tablets unless pernicious anemai has been ruled out..also unsure why i have been prescribed tablets now when only injections were mentioned.thank you

[Jaydee1507 Administrator]

Its possible that you are showing some signs of anaemia on your FBC. Perhaps pop down the surgery and get a print out of the results?

It might be that the right hand doesn't know what the left hand is doing. I wouldn't get the prescription for folic acid until you're sure you haven't got to start injections which sounds likely. B12 should be started before folic acid/folate. You might want to also ask for further PA testing.

[Rachel20 in reply to Jaydee1507]

Thank you for your response.I got a txt message saying I have a prescription for folic acid.It was the chemist that told me it was because of b12.I just read on nhs site that you should be tested for pernicious anemia if you have b12 deficiency. Ido feel terrible.I don't think i can get a print out because an appointment has been made and the gp wants to get over results.Just confused at having tablets instead of injections.Thank for your hpBest wishes x

[Jaydee1507 Administrator in reply to Rachel20]

Folic acid is folate which is not the same at all as B12. Do not take it until you know whats happening with your B12 treatment and you have started injections.

If you are in England you can get the NHS app and some surgeries can give you permission via reception to see your blood results.

[Rachel20 in reply to Jaydee1507]

Thank you for your advice best wishes x

[humanbean in reply to Jaydee1507]

Folic acid isn't folate, but in those who can do the conversion, folic acid will be converted into methylfolate. Many people can't do the conversion well or they do it particularly slowly, so supplementing with methylfolate is far better and safer than taking folic acid.

Folic acid wasn't invented/developed until 1943, so it was never essential for humans. Methyfolate is the essential one.

takecareof.com/articles/ben...

chriskresser.com/folate-vs-...

BUT - there is a HUGE BUT - for the body to make use of vitamin B12 it needs folate. Someone with almost no B12 could run out entirely if they start taking folate in any form before increasing their B12 - and running out of B12 entirely is very dangerous.

Running out of B12 can cause this to happen :

en.wikipedia.org/wiki/Subac...

I have read - and that link above mentions it - that this idea of needing to take B12 before adding in folate has been challenged - but it is now completely unethical to test it. So, people should always improve their B12 for a few days or a week (if taking tablets) or get a B12 injection before taking folate, if their B12 is extremely low.

However, if Rachel20's B12 level is 54 from an Active B12 it isn't quite as bad as I first thought - although it is still terribly low. I assumed it came from a serum B12 test but I got the wrong end of the stick.

Incidentally, I sent an email to Medichecks quite a while ago and asked whether their folate test measured folic acid alone, methylfolate alone, or the sum of both.

This is the reply I got and it is utterly useless and clearly the "physician" answering didn't even read my question or didn't know anything about folic acid/folate and the conversion from one to the other.

Our physician has come back to me with a response to your email. They have advised as follows:

This test looks at total folate levels in the blood serum.

So I ended up none the wiser.

[shaws Administrator]

If your GP has diagnosed Pernicious Anaemia you will have to have regular injections.

I have this condition too (as did my Mother) and I have monthly injections.

My Mother - after many years on B12 injections told her she no longer needed them as her blood test was 'fine'.

Unfortunately, my mother developed stomach cancer due to the GPs advice,

[Rachel20 in reply to shaws]

Oh my goodness.I am genuinely so sorry to hear that.That is dreadful.I am a bit concerned as I haven't talked about or had results from the gps just a txt message saying my prescription for folic acid is at the chemist due to my bloods.The chemist told me it was b12..I read if you have low b12 with symptoms ( and I do feel dreadful)you should be checked for pernicious anemia.I don't know if i have been.I am so sorry you and your mother had to go through that

Best wishes x

[helvella Administrator Thyroid UK]

Could you clarify - was that B12 result Active B12 or standard serum B12?

(And the advice not to start folic acid before your B12 has been addressed is important.)

Some FBC results would be relevant. For example, MCV and RDW.

[Corrected - I originally typed MCH when I meant MCV.)

[Rachel20 in reply to helvella]

I'm.sorry I can't remember what was ticked on the blood form regarding b12.Not sure if it was active or serum.Cant get results until I have an appointment.May just wait and see what is said at appointment now.Did have a fbc through x

[userotc in reply to helvella]

Re your final point, do you know what allowance is generally made with these results? My sister's MCH was ~7% over range when last tested by NHS surgery 18m ago (RDW unmeasured). The result was considered "OK/no action required".B12 is to be tested soon (obviously standard!).

[helvella Administrator Thyroid UK in reply to userotc]

Afraid that was a typo by me! I meant MCV.

But the interpretation of FBC generally requires a consideration of multiple FBC tests. Which is one of the reasons there is a group of tests. (Partly because they are physical tests which can all be done automatically on a single sample.)

[userotc in reply to helvella]

Oh, I see. Sisters MCV is 80% thro normal range so presumably OK.

[helvella Administrator Thyroid UK in reply to userotc]

Quite possibly!

But this is one reason that RDW can be very helpful.

If someone is B12 deficient, they would be expected to have high MCV.

If someone is iron deficient, they would be expected to have low MCV.

If someone has BOTH those, their effects on MCV can sort-of cancel each other out. (At least to some extent.) But if that is happening, you would see high RDW.

[userotc in reply to helvella]

Hi Helvella

As an updat to earlier, my sister's std B12 has now been tested. Whilst classed as "normal" by NHS (isnt everything!!) and not deficient, I believe it is on the low side at:

334 ng/L ; Normal range 211.00 - 911.00ng/L

This corresponds with her new MCH figure being even higher than I quoted to you earlier at 35.1 pg i.e. ~10% over the normal range maximum. According to the link below, that is high although NHS have again dismissed it as OK (!).

healthline.com/health/mch#h...

She doesnt have all symptoms listed but some pins/needles. I plan to advise her to increase B12 via foods and/or a B Complex. Note my mum's B12 was 311-344 for >1 year but has now doubled after a B Complex supplement.

Any relevant experience/comments?

[helvella Administrator Thyroid UK in reply to userotc]

I think you are at least as aware as I of the issues.

The thing I'd be careful about is the folic acid content of many B complexes. Excess is not good.

Quoting Mary Poppins: Enough is as good as a feast.

[userotc in reply to helvella]

Thanks for your prompt response. If a supplement, I'd probably suggest the one mum has which includes 400mcg (200% NRV) folate ie Pure encapsulations.

[userotc in reply to helvella]

So nil folic acid!

[SlowDragon Administrator]

sounds like GP has seen results

You are therefore legally allowed copy of results yourself

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

patients-association.org.uk...

healthunlocked.com/thyroidu...

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

Note that improving folate when B12 is very low is not a good idea. Taking folate before B12 is good enough can lead to severe neurological problems.

en.wikipedia.org/wiki/Subac...

It is vital if you need to supplement both B12 and folate that B12 is started a week before the folate.

[Partner20 in reply to SlowDragon]

Most practices need a GP's authorisation to put any form of test results online. Yes, in this case the GP has seen the results but has stated an appointment is needed to discuss them. There may be good reason for the discussion prior to notification, and as we are not privy to what the GP has seen, we can make no comment. Seeing a result of concern without the support of a medic can been a shock, as I know well, so a GP has the final word on whether results can be issued to the patient without prior warning. You will find this stated in NHS information about patient access to test results.

[Rachel20 in reply to Partner20]

Your absolutely right..i shall wait and see. Thank you for your sound advice.It is much appreciated

[Partner20 in reply to Rachel20]

You are more than welcome. It is easy for people to comment here but they have little idea of what the GP knows or of your medical history, which often has a bearing on a diagnosis. The important thing is not to worry, because if anything needed urgent attention you would have been seen or referred without delay. However, your GP obviously wants to go through your results, maybe some of them can be abnormal simply due to a lifestyle or diet, and a discussion will help him with his diagnosis and any resulting description. Hope your appointment will clarify the situation and provide the treatment and information you need.

[Bearo in reply to Partner20]

The receptionist always says you can’t have your results until GP has seen them, and I did wonder if you could ask to see results before a consultation. I can see your point about not seeing results until you see the GP, but this is so annoying! Not knowing what the GP is going to say puts you on the back foot, unprepared to state your case if you disagree with them.

[Rachel20 in reply to Bearo]

Ha ha yes bit annoying isnt it.Especially when appointments are like gold dust way off in the diatance.Im just going to have to wait i think..xx

[Mccrae]

may I ask your b12 lab ranges. I am in the United States and was just diagnosed with b12 deficiency

[CoeliacMum1]

I have pernicious anaemia but my blood test was negative for intrinsic factor… I’m ok with B12 levels now, I have 3 monthly injections my levels were double figures back then they gave me a loading dose sever Injections over 2weeks and just left it at that, 6 months later I was almost deficient again, guess it was the intrinsic factor test coming back negative and is why they didn’t think regular injections were required … but tge B12 injections were reinstated by my gastroenterologist as at that time also diagnosed as coeliac and with hypothyroidism. My folate (B9) and iron dip still 10 yrs on, my folate more so it’s always low in range.

You can still have pernicious anaemia with negative intrinsic factor.

Have you a practice pharmacist you could talk too?

At our surgery these things are dealt with by those and often you can get call back quicker than talking to GP… explain to receptionist the predicament and you’re just checking, the information passed on is correct … it’s there on NHS website clear as day stating…Your B12 needs sorting before taking folic acid.

[Rachel20]

Wonderful advice..thank you so much.

[shazthescot]

I am the same been feeling terrible for few months on 100 levo had test TSH 4.9 wouldnt increase dosage did more bloods . Got call to say B12 and blood count low start 5m folic then retest bloods in 4 weeks as may need b12 injections

[SlowDragon Administrator in reply to shazthescot]

shazthescot

With TSH over 2 you need dose increase in levothyroxine

Low thyroid levels results in low vitamin levels

[shaws Administrator]

I have Pernicious Anaemia and have monthly B12 injections (before I used to get one every 3 months..

My Mother also had P.A. and had regular B12 injections until GP told her her bloods were fine and she did not need any more B12 injections.

Unfortunately, due to GPs advice, Mother died prematurely due to the withdrawal of B12.