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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:

CCSS15 · 21/01/2021 22:28

Mine was 148 when they started with the loading injections then I have them every 12 weeks via the GP. Its not enough so I buy the b12 from Germany and self inject

StillDumDeDumming · 21/01/2021 22:33

My dp has injections and had a count of 97. The dr said you can't increase it reliably with oral supplements because you can't make proper use of it without the intrinsic factor. Confusingly if you take supplements the blood tests can show as OK even if your body isn't making use of the b12 supplements or food you're taking. The injections go straight to your muscle and so are absorbed. Treatment in this country is shocking. In other countries you are diagnosed and inject yourself (which is what dp is now doing). The neurological effects are really bad and not understood by a lot of gps. The PA society has good info. Especially about misleading test results.

StillDumDeDumming · 21/01/2021 22:35

@CCSS15

Mine was 148 when they started with the loading injections then I have them every 12 weeks via the GP. Its not enough so I buy the b12 from Germany and self inject

This is what my dp did. In lockdown they asked him to inject himself. We got it to 6 weekly.

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Theforest · 18/02/2021 12:59

Just got agreement to loading injections from next week. Mine was 138 with symptoms.

How soon until you notice an improvement?

Original poster

anonymousdaughter · 18/02/2021 13:43

I’ve still not been treated sadly, GP ringing next week to discuss again - told I need to book two blood tests in two weeks time .

Interestingly they said my folate levels are also low, but still want to check re intrinsic factor first before they do anything else .

Fingers crossed for next bloods to get it sorted !

OP posts:

bluedomino · 18/02/2021 13:55

Please have a look at the Pernicious Anaemic Society website. There's loads of good information there and they can advise you what to say to your GP. If you are showing symptoms and having a low count they should really start treating you. Its an extremely cheap, water soluble injection, meaning you wee out anything you don't use. You could take 20 times the recommended dose and not have any side effects. The GP have hardly any training on PA in med school, so you really need to learn a much as you can as every doctor will try to tell you to eat more meat! I've lost count off the times I've had to explain intrinsic factor to GPs. Until I found a GP who likes blood issues and he put me on 3 weekly jab and showed my other half how to administer the jab. So, I no longer need to go to the surgery and sit in the germs. Don't give up, its grim and the problems it brings are nasty. Best of luck.

polkadotpixie · 18/02/2021 14:13

I have B12 injections because mine was 200 and didn't improve with oral supplements

At that level you must feel dreadful and I would be kicking up a stink with the practice manager until they agree to immediate loading doses followed up by regular maintenance injections

Tomnooktoldmeto · 18/02/2021 15:42

As others have said please look at PASOC the uk is out of step with the rest of the world who recognise and treat B12 deficiency at a MUCH higher threshold

Below 500 nerve damage starts to occur, it’s vital that your folate levels are good as you cannot absorb B12 with poor levels along with vitamin C

Do not let your GP fob you off, many of us self administer due to the Uk policy of controlling access to this vital vitamin

Original poster

anonymousdaughter · 01/03/2021 17:27

So GP receptionist is now saying that doctor said I’m NOT anaemic at all and never was ... said I’m absolutely fine and not to worry about what the numbers mean . Have just done an econsult asking them if I’m not anaemic then what’s wrong? Fainted three times on Thursday and nurse said then that they needed to get the injections started . So bloody frustrated .

OP posts:

Tomnooktoldmeto · 01/03/2021 18:43

Insist on a copy of your results, post here and people can advise you

Diadora30 · 01/03/2021 19:59

Mine was 101. I was on 3 b12 injections per week for 2 weeks, and now I have them every 3 months.

I also suffered from serious depression and anxiety around the time my b12 was discovered to be low.

Rowgtfc72 · 01/03/2021 20:31

Mine was 150 and my doc put me on a b12 rich diet. Didn't make a difference.
I eventually went on 3 monthly b12 jabs but no loading dose.
It made a world of difference.

Mammyofasuperbaby · 01/03/2021 20:39

Mine was 50 in May 2020 while I was pregnant and the drs didn't seem to be in any hurry to treat.
I was passing out, couldn't breathe and had loads of neurological symptoms and it took them weeks to organise my loading injections. My iron was also extremely low (9 I think)
I ended up in hospital after having 2 of my loading injections (not realated) and the drs were saying I should have been sent to hospital for infusions rather than injections.
Op I'd keep on at the drs for the b12 injections and try to see a different one if your current one isn't taking it seriously

Original poster

anonymousdaughter · 02/03/2021 11:45

They’ve emailed this morning and said (in a matter of words) -

Symptoms could be multifactorial and not necessarily PA ... increase exercise, fluids and veg and fruit intake ...

Said they can’t tell if it’s B12 as results aren’t fully back - and also need to do yet another blood test at the end of March as its ‘too soon to make a decision’

So may still be anaemic but they just can’t decide .

Fingers crossed the end of March result gets us somewhere .

OP posts:

Tomnooktoldmeto · 02/03/2021 13:37

Anonymousdaughter. You have a legal right to know those results, the fact they are being evasive makes me think they know they’ve cocked up (I had the same problem) and that you are aware of that

52andblue · 02/03/2021 14:33

Following with interest.
My GP failed to give me a loading dose after surgery & then my B12 injections were delayed. I was fainting daily, started to slur & stumble. It was horrendous. I lost my job over it. I also have Sleep apnea: they put it down to that & my not using my CPAP properly - I do!!
I am a single parent and Carer to two kids with Autism. My GP didn't care. I have just paid for some Thriva blood tests as my GP only does annually and is reluctant to pass on the results from them. I will trust the Thriva results more tbh and will then go back if they are low again.

52andblue · 05/03/2021 10:30

Did you have any luck with the GP @anonymousdaughter

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