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Original poster

B12 - what’s low?

42 replies

anonymousdaughter · 21/01/2021 19:19

GP said I’m looking like I’ve got pernicious anaemia, but they aren’t convinced .

Level checked beginning of November was 216, checked again 6 weeks later and 115 .

GP says they won’t treat yet, they’ll retest in end of March/beginning of April - they’ll do a couple more blood tests and one to check specifically for intrinsic factor . Only if it’s still low then will they treat .

I have a very strong family history of PA - multiple relatives with neurological involvement - and have also got dyspraxia myself as it is - I could do without additional neuro symptoms if I can avoid them . At present I have tinnitus, exhaustion and am walking with a crutch due to vertigo ... GP said that’s probably caused by the anaemia .

Is 115 particularly low? Or am I over reacting a bit ?

OP posts:
MrsDThomas · 21/01/2021 19:23

Mine was 155 and im on B12 injections.

DustyMaiden · 21/01/2021 19:25

It’s very low. I try and keep over 500 to avoid symptoms.

Shesingsshangrila · 21/01/2021 19:28

Yes, very low - under 100 and it can be very serious. You should be on loading injections (every other day for two weeks) ASAP!

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Theforest · 21/01/2021 19:29

I dont know. I have been diagnosed with low B12 but they didnt tell me the levels and I didn't think to ask as I was quite shocked at the time. Must remember to ask.

I have been taking supplements for 6 weeks and now have to get another test to decide whether I need injections. I feel I will as I am still getting a variety of symptoms.

Is there anyway to test from home, or do you just have to have regular blood tests?

INVUURAQT · 21/01/2021 19:29

I had some blood results beginning of December which flagged borderline B12 levels. 197 -771 is the reference range my GP measured against.

I was 196 and considered borderline

Copy & Paste from my test results
Blood haematinic levels Note Low B12-Intervention Required.
Serum vitamin B12 level 196 ng/L [197.0 - 771.0]
Outside reference range

With the reference range in mind, yours does seem very low.

HildegardNightingale · 21/01/2021 19:51

Mine was 122. I’m on vit b12 injections now.

Leuty · 21/01/2021 20:02

@INVUURAQT

I had some blood results beginning of December which flagged borderline B12 levels. 197 -771 is the reference range my GP measured against.

I was 196 and considered borderline

Copy & Paste from my test results
Blood haematinic levels Note Low B12-Intervention Required.
Serum vitamin B12 level 196 ng/L [197.0 - 771.0]
Outside reference range

With the reference range in mind, yours does seem very low.

Had to check mine, came up 197. Did they offer you any treatment? Sorry to jump in here!
BidensWingWoman · 21/01/2021 20:09

I was told normal was 200-2000, so a wide range.

Mine was 126. Getting retested in March after taking oral supplements, to see if I need injections.

Original poster
anonymousdaughter · 21/01/2021 20:16

@BidensWingWoman

I was told normal was 200-2000, so a wide range.

Mine was 126. Getting retested in March after taking oral supplements, to see if I need injections.

That’s kind of what GP said to me, to start eating B12 foods and see what happens in March, but I’m struggling and so enormously tired . I’m a uni student so need not to be so tired , it’s awful .

DM, DGran, DGreat Gran x 2 and DGGrandfatjer have all had it or believed to have had .

OP posts:
likeamillpond · 21/01/2021 20:20

Is there B12 in marmite?

BidensWingWoman · 21/01/2021 20:30

I'm taking a multivitamin that has 800% of RDA. It's not ideal, apparently the b12 drops that you put under your tongue are better - but it's what I have so it's what I am using.

I don't think I'd rely just on diet tbh - my doctor definitely recommended using supplements.

tellthem · 21/01/2021 20:35

I was 182 and symptomatic, but they said it was "fine". for me at that level I felt I could barely move.
I take the better you spray which did improve things somewhat.

DianaT1969 · 21/01/2021 20:43

I don't understand what the the GP's rationale is for not treating it now? It is very low, you have debilitating symptoms, and you aren't doing anything apart from trying to include more B12 in your diet?

Original poster
anonymousdaughter · 21/01/2021 20:54

@DianaT1969

I don't understand what the the GP's rationale is for not treating it now? It is very low, you have debilitating symptoms, and you aren't doing anything apart from trying to include more B12 in your diet?
Theh said not to take any supplements as it might influence later blood tests, give a false high? She said they’ve got very specific guidelines and aren’t allowed to inject unless absolutely essential for some reason - apparently they need to test several times and check . Also said supplements won’t do anything if it is pernicious anaemia - which I’m less than sure of . I’m wondering if it’s a local thing - other nearby surgery has stopped doing the jabs altogether claiming they can’t because of covid .

Confusingly she did say I’ve been significantly anaemic before - but never told about it . Said they’ve always put it down to diet - however I eat quite a ‘normal’ diet, not vegan or veggie or anything, have eggs and fish a few times a week, veg most days .

My mum was diagnosed at 26 when pregnant with me, but not treated until she was about 40 .

OP posts:
Original poster
anonymousdaughter · 21/01/2021 20:55

That said my mum has peripheral neuropathy in hands and feet, vertigo and memory issues so if I can avoid those issues ...

OP posts:
INVUURAQT · 21/01/2021 21:48

@Leuty

I wasn't offered any treatment but I ordered myself some B12 supplements off my own back. I started taking them approx 10th December and by the 29th December when I was re-tested my levels were at 282, so a good improvement very quickly.

NeilBuchananisBanksy · 21/01/2021 21:53

That sounds awful. Can you find if there are any Nice guidelines. It sounds like you are being fobbed off. I'd be really pushing for this.

BidensWingWoman · 21/01/2021 21:58

Theh said not to take any supplements as it might influence later blood tests, give a false high? She said they’ve got very specific guidelines and aren’t allowed to inject unless absolutely essential for some reason - apparently they need to test several times and check . Also said supplements won’t do anything if it is pernicious anaemia

If taking supplements won't do anything if it's pernicious anaemia (which is the impression I got from my doctor too) then I don't understand what the problem with taking them would be... I can't see how a false high would be the result.

But maybe that's just me..

Msgiggles30 · 21/01/2021 22:01

It depends where you live as to what is low Angry. I got diagnosed last year and my level was 60! I thought it was just my stressful job and bad circulation..i was slurring and all sorts but just assumed exhausted. The doc checked any my level 3 years ago was 160 which was already low and should have already been monitored. She said that 160 would be treated in aome counties but that ours only treats under 300 so it is literally a post code lottery. If you are on Facebook there is a really good group with 24k members with lots of knowledgable people who will help you understand lab ranges and help you draft a letter that you need treatment..type in pernicious anemia support group. Also what is your folate? Its really important as if its low end your body can't use the B12 properly. They said mine was normal but when I asked for actual asked numbers it was 4 on a range of 4-20 and 3 is deficent! It needs to be in the upper quartile of the range when on injections so I am taking folic acid too.

Msgiggles30 · 21/01/2021 22:02

Oh and once they saw my level was that no other tests literally rang me can you come right now!

Msgiggles30 · 21/01/2021 22:03

*sorry that should say ours only treats under 130

BidensWingWoman · 21/01/2021 22:04

She said that 160 would be treated in aome counties but that ours only treats under 300

160 is under 300?

BidensWingWoman · 21/01/2021 22:04

Ah, cross post!

Msgiggles30 · 21/01/2021 22:15

My mumsnet is going bonkers and not making it clear if ive posted or not Confused. But apologies for all the typos, very tired!

Estara · 21/01/2021 22:25

I've just checked my patient access and until about 2010 anything over 200 was considered normal, this then changed to 140.
I know you're feeling like crap but if you self supplement then have another blood test then the readings will not reflect what you treatment you need to get. I'd ring your doctors and ask them to explain their decision and refer them to the nice guidelines, especially if you have a family history of it. You should be having the loading doses to build your levels up.
I hope you get somewhere with them xx

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