B12 defiency: So last month I was told... - Pernicious Anaemi...

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B12 defiency

Al1985 profile image
15 Replies

So last month I was told I had b12 defiency and I was given the injections every other day for 2 weeks I was tested for pernicious anaemia but told it was negative. The gp said I would need the injections every 3 months!

I had my bloods done last week to see what my levels were doing and had my results back this week.

So my b12 has gone from 135 to 1500 so one extreme to the other so the gp was like so you don't need a 3 month injection and even if it drops you will be within the range.

I do feel a lot better but still getting headaches and pins and needles the gp said these symptoms will go in time. She said I don't need to take any supplements (I'm a strict vegetarian) and I'll be fine and just to wait for my dietician appt in may.

I told her I was abit concerned about how Ill i have felt and worried the levels could drop again so she will be testing my blood again in 2 in half months.

Just wondered if this sounds normal?

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Al1985
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15 Replies
Gambit62 profile image
Gambit62Administrator

B12 deficiency can be caused eithier by an absorption problem or by lack of B12 in your diet.

As a vegetarian you may need to supplement B12 - as it is only found in meat, dairy, fish and eggs so if you avoid these foods you won't get enough.

The body doesn't need much B12 and stores large quantities in the ileum so a deficiency can take years and even decades to manifest but tends to snowball towards the end as reserves get very low.

The change in levels in your blood doesn't actually mean anything - the amount of B12 given to you was enormous and can start reactions that mean that the amounts needed in blood for someone to be healthy change dramatically.

The IFA test is notoriously prone to false negatives - 40-60% of the time so a negative result definitely does not rule out PA as the cause of a B12 deficiency.

The pins and needles are neurological symptoms - loading regime for these is different - 3xweekly until symptoms stop improving (review at 3 months) and then on to maintenance every 2 months unless it is clear that the deficiency is dietary in which case it can be treated with lower dose supplements anyway.

The headaches may be down to macrocytic anaemia and that does take a few months to clear.

Sorry but I suspect you will have a battle on your hands to get correct treatment and first step is actually getting a copy of the blood test results that diagnosed you as having B12 deficiency.

Next will be writing to your GP with info above - particularly if your diet is quite rich in dairy/egg and you eat foods that are fortified with B12 (a lot of breakfast cereals are fortified ... and a can of red bull is more than enough to give you your RDA - but not sure I'd recommend it as a dietary supplement :))

Al1985 profile image
Al1985

Thank you I managed to get my bloods from Drs I'm not sure how to add them to the post?

Steap profile image
Steap in reply toAl1985

Take a clear photo of them then go back to your original post and click the arrow to edit it.

Choose add photo

Al1985 profile image
Al1985 in reply toSteap

Thankyou have just added them

Al1985 profile image
Al1985

So have just added bloods if anyone can help? Many thanks

Gambit62 profile image
Gambit62Administrator

Thanks for posting the results. Were there more results on 20-Feb - particularly looking for anything that might indicate macrocytosis - larger rounder blood cells than normal.

The tests above highlight that IFA negative doesn't rule out PA.

What you need to do is get your GP to recognise that raising of levels so soon after shots ... and determining whether or not further treatment is needed purely on the basis of test scores without evaluating symptoms is the wrong thing to do.

Also need to point out that treatment with neurological symptoms is what you need to follow - which is different from treatment if there isn't neurological symptoms.

Gambit62 profile image
Gambit62Administrator in reply toGambit62

unfortunately you are restricted to one page per post so you will need to put the other page up on another post - or list the relevant results

Al1985 profile image
Al1985 in reply toGambit62

Yes I thought that ha!

It's says my full blood count was normal apart from erythrocyte sedimention rate is 13 range is 0.00-10 but it says it's satisfactory

Al1985 profile image
Al1985 in reply toAl1985

So should I wait and see how I am and go back to Drs in 2 months to have a blood test? It's all so confusing but thank you so much for all the information and replying

Gambit62 profile image
Gambit62Administrator in reply toAl1985

what were MCH and MCV - up towards the top of the range would be consistent with developing macrocytosis - also what was the RBC distribution width? - ranges as well as results would be useful.

Al1985 profile image
Al1985 in reply toGambit62

Mcv is 89.6 range 75-105

Mch 28.8 range 26-35

Rbc 4.66 range 3.50-5.50

Gambit62 profile image
Gambit62Administrator in reply toAl1985

okay so no sign of macrocytosis - which is okay as it isn't one of the first symptoms in 30% of those with B12 deficiency.

back to trying to educate your GP about the limits of serum test once you have had loading shots.

Fighterb12 profile image
Fighterb12

If you have any sign of neuropathy then it would be wise to continue with injections until no further symptoms .

If this was purely down to diet then in theory you should be ok with supplement /sublingual B12 but in high amounts so 5000 mg twice a day and making sure it's co factor folate was up ,400Mg

And make sure high potassium foods are taken as high amounts B12 will delpete it .

Go on symptoms not blood work

Gambit62 profile image
Gambit62Administrator in reply toFighterb12

Fighterb12 - I think you mean mcg rather than mg.

If cause of deficiency is dietary then normal treatment would be 50mcg tablets - and this should be sufficient to correct.

5000mcg twice a day is a dosage that may be effective in treating a deficiency that is caused by an absorption problem but it doesn't necessarily work for everyone.

Fighterb12 profile image
Fighterb12 in reply toGambit62

Yes

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