B12 & Pernicious Anaemia advice please

[Mazcan]

I've just been told yesterday I have B12 deficiency, injections starting on Monday.

I'm pretty sure my dad (who passed away of covid in July) had pernicious anaemia

I've had FBC & Vitamin Assays, low B12 & Folate

Advice on whether to start 💉 or ask for investigation into pernicious anaemia?

& any other info or advice please 🙏

[2FloorLuka]

Hi! I am sorry for your loss. I think you should start your injections as soon as possible. There is no reason to wait for an "official diagnosis" of PA. It will not change the treatment. B12 deficiency and PA are treated the same way. In my opinion, your top priority is to stop the progression of the symptoms giving your body what It needs. Your healing journey is about to start. Don't delay it! Good luck!! ((Hugs))

[VellBlue in reply to 2FloorLuka]

Exactly as 2FloorLuka says, no need to wait for PA diagnosis to start your treatment.

But please do mention to your GP that you are pretty sure your father had PA and make sure you get tested. A diagnosis of PA will means you will need continued B12 injections for life because you are unable to absorb it from your diet.

Note that the tests for PA do miss a lot of cases, so even if that comes back negative, it doesn't mean you don't have PA. If you find you are unable to absorb B12 from your diet or supplements and there is no other reason for the malabsorption (medication/other gut issues), then you may still have it.

[Gambit62 Administrator]

The test for PA as a specific cause of B12 deficiency can be done after loading shots - you should avoid doing it too close to a shot - exactly how much time you need varies depending on the test itself. Older methods need 10 days - more recent methods as little as 48 hours but you won't know what method is going to be used.Generally it is easier to rule out other causes - diet, SIBO, h pylori - than it is to confirm PA (though there has been some work developing a test involving gastrin which could be quite useful.

It can be useful to have a PA diagnosis as it flags up a few other risks but as others say the treatment would be the same.

Please note that some people can actually feel worse before they start to feel better.

If you have neurological symptoms (eg tingling in hands or feet) then the loading shots should continue until there isn't any improvement and then you should go on to maintenance doses every 8 weeks. If you don't have neurological symptom then you should go on to maintenance doses that are 8-12 weeks (though ma ny GPs aren't aware of changes that came in a couple of years back and most local guidance hasn't been dated for changes to best practice for much longer periods.

PA can also affect other vitamins and minerals - most notably folate and iron so the fact that you have both folate and B12 deficiency makes PA more likely.

Please also note that best practice would be to not start treating the folate deficiency until after injections have started - very, very small risk of neurological damage - but if you have started folate supplements already then and haven't experienced anything then you should be okay.

It's tempting to want a diagnosis but to be honest it can be so difficult to get a definitive answer and it is really important to start treatment as soon as you can.

[Mazcan]

Thank you all so much for your replies it is greatly appreciated. Never thought to ask my dad more about PA when he asked me to take him for shots.

Due to start B12 injections on Monday so will go ahead with that.

This has all stemed from pins n needles in left arm, thumb, index and middle fingers, it never goes away, pain relief doesn't seem to work during the night so I'm not sleeping just sat on the sofa all night. Daytime is manageable but it's really getting me down.

Blood test showed 167 B12 and 5.0 Folate

I dunno much about all this but they seem keen to get me started on injections asap

[Hidden in reply to Mazcan]

Sorry to read about your dad. So good to read that they are starting you on injections straight away and not start with tablets. As for sleeping this will improve once on injections.

As for not asking your dad about P.A. when taking him for shots, I think we are probably all ignorant of the vitamin until it happens to us! We tend to think "well dad (or mum) are of a certain age and we are fit and healthy.

My only advice would be eat a banana before injection, it sounds strange but when I dont I do suffer slight reaction.

Good luck on MONDAY!

[Mazcan in reply to Hidden]

I'll be sure to take a banana thank you x

[VellBlue in reply to Mazcan]

Good that you are starting treatment.

Am not a medic, but from what I have understood, generally the neuro issues from B12 deficiency are symmetrical, so the fact that your issues are on only the left side may indicate something else is also at play... May be worth consulting a neurologist if you've not already done so.

[Mazcan in reply to VellBlue]

Ah I didn't realise neuro issues tended to be symmetrical. I am lucky enough that my husband has BUPA so I had an appointment with a neurosurgeon on Thursday, thw same day I found out about my B12 levels.The neurosurgeon has referred me for an MRI to check my cervical spine.

I will go along with the B12 for now I think and see how things go.

Thanks for the info n advice x