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Pernicious Anaemia Society
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Vit b12 deficiency or not?

I saw doc in Dec because I am so (for me uncommonly) tired, ache, dizzy, forgetful (to the degree that I forgot to put pasta in a pasta bake!)

My grandma, Mum and 4 siblings have P.A so Doc did blood test and I had a call to say b12 is 193 and she prescribed 50mg b12 tablets.

Was also told vit d was low and platelets slightly raised, although I don't have actual numbers for those.

Tried talking to doc on phone about b12 injections but she was dismissive and said wasn't going to give me injections for life based on one blood result and take the tablets and see what test shows in Feb.

I'm concerned taking tablets will raise b12 just enough for her to say I'm fine!

Any advice?

10 Replies
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Hi Ottobars does your doctor know of your family history with P.A?

Are you feeling any benefit from taking the 50mg b12 tablets?

Do you know whether your Folate level was tested?

Your low Vitamin D may be behind some of your symptoms.

Taking supplements that contain B12 will affect any tests ordered by your doctor to assess your B12 status. You should not take any supplement with B12 before having your B12 assessed (including MMA/homocysteine/Active B12). For testing intrinsic factor antibodies: keep one week between an injection and the test.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well

.

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Yes my doctor knew of family p.a. history, when I told her my symptoms she asked if there was any family history she should be aware of and then said she'd specifically check my b12.

I feel worse if anything! Been taking tabs for about four weeks and taking vit d too. No idea if foliate was tested. I shall ask for actual results I think.

Are you suggesting that if I don't take b12 tablets for a week before my blood test then it should be ok or is that just intrinsic factor test thats ok for a week. I've got a 2 week gap when tabs run out to my blood test anyway.

Are b12 tablets likely to actually work at just 50mg a day? I don't mind taking tablets if they'll work!

Thanks for your help.

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In the light of your family history I would just push for the Intrinsic Factor Antibody (IFA) test.

Sadly the IFA test is unreliable in that it gives false negatives in people with PA half the time. So a negative result doesn't mean that you don't have PA. However, a positive result is a sure-fire, 95% certain indicator of PA.

Your doctor should know that the supplements given you will skew the serum B12 test rendering it pointless unless it comes back LOW.

You could also refer your doctor to what The British Society for Haematology guidelines say on the Diagnosis of B12 and Folate Deficiency "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment".

google.co.uk/url?sa=t&rct=j...

I'll bid you goodnight.

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Thanks for the info Clive. I've called surgery today and was told fate was fine at 13.8 and vit d was at lower end of normal at 53. I was told to just buy vit d over the counter and take them year round which I've started already. Intrinsic factor test wasn't done. I'll have to go back to see them I guess but will wait for a 'good day' when I have at least a bit of brain power at my disposal! Thanks again.

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"I'm concerned taking tablets will raise b12 just enough for her to say I'm fine!"

I think you are right to be concerned. That attitude seems to happen to many people including me.

With your family history of PA I think your GP should be considering it seriously. I suggest you post all your blood results complete with ranges on here (eg vit B12 103 < 180-1000) You are entitled for get print outs of these from your GP.

Then the more knowledgeable on here will be able to offer you advice as to what to do next.

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I've just my initial GP appointment and explained my 20 years of Lansoprazole and the effects it has had on me culminating in my hands and feet tingling and numbness.

I explained how it resulted in my searching and finding the PA Society and the sense of relief I experienced on finding so many people the sae as me.

He dismissed what I had said, refused to acknowledge that PPI's block B12 absorption (among other elements as well) and 'didn't need to look at some website to tell im ow to do his job as e is a qualified GP' - I referred to the official NHS website which clearly states long term PPI use can lead to B12 deficiency.

He did draw up the blood test sheet, with comments of '..feeling tired, pins and needles in hands.'

I tried to discuss the widely publicised inaccuracy of the current testing so as to get him onside with me; I got a wave of the hand and was told 'now is not the time, get the tests and we'll see.'

He fulfilled a stereotype of a certain kind of GP I' afraid, that's all I can say without breaching forum rules.

SO I'm in two minds as to weather to do the bloods (you've NO idea of just how needle-phobic I am) or just to get on with supplementation and see how it goes. The week I started I felt good positive steps within a few days but have dropped off as I knew blood tests were imminent.

I know fear is a deciding factor and I just need to man up, but I'm also pretty sure what the same GP will say when the bloods come back and I'll be in the tiresome 'your levels are fine I'm a doctor and know what I'm doing' scenario.

It exasperates me to think these guys are more concerned in a back-covering exercise rather than listening to the patient and the symptoms We present; do they think We are all just after a claim or some DHSS work-exemption type claim?

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If I were you - I wouldn't take the tablets and say that I had.

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If I stop now (been taking for about 4 to 5 weeks) and have blood test on 16 Feb, so 4 weeks away, do you think results will still be skewed?

Asked about vit D level and it's 53 (which they said lowest normal is 50) and folate was fine at 138.

Any help appreciated!

Thanks.

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Sorry - 13.8 ate not 138!

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Ottobars,

The dose you have been given is the dose that would treat a dietary deficiency and is extremely unlikely to have any impact on an absorption problem as it would reduce your ability to absorb B12 to a percent or so of what you would absorb without an absorption problem.

Having said that though a dietary deficiency is extremely unlikely unless you are a strict vegetarian and avoid all foods that are fortified or contain added B12 - which would include breakfast cereals and even a lot of 'energy' drinks.

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