Pernicious Anaemia Society

Will have to avoid blood tests in future

Went back to have my three monthly Wednesday and was expecting to feel pretty rough but all good although was violently sick on and off last night but have put that down to a bug . The joys of working with children! I asked the nurse when my next blood test will be and she said a year . Then casually asked playing dumb blond but I get b12 injections for life now as that's what dr said and she said oh no not if results come out high! oh dear ! Also said most people are moving to tablets now . Just hope the gp who originally flagged up my low levels is still there then . As was originally sent out letter from surgery saying repeat blood test in three months and he picked up and pointed out that my b12 was 137 range 189-900 which is why I now have the injections feel like I owe him the last four months of my life.

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If you were prescribed injections for life , then you must have P.A. . They MUST be for life . If you are having injections , then your B12 readings will be high . There is no point in testing for B12 if you are having injections . You will find that in the scientific literature about B12 . Your G.P should know that.

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Hopefully gp will . Just the nurses worry me as actually only gave me five loading although had been prescribed 6 as said only give 5 now ! At the time I didn't know anything about pa so was like ok but now I know what I should have had !

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There a couple of counties whose Guidelines only give 5 loading injections and a retest after 3 months, and no more if your B12 is in range by then. Then another retest in a year. Trying to get more is almost impossible here.

I hope you find your GP.

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I suspect nurses and GP may have forgotten that BNF British National Formulary Chapter 9 Section 1.2 specifies 6 loading jabs over 2 weeks followed by jabs every 3 months for those with b12 deficiency without neuro symptoms.

If patient has neuro symptoms then it is a loading jab every other day for as long as symptoms continue to get better followed by a jab every 2 months.

bnf.nice.org.uk/drug/hydrox...

cks.nice.org.uk/anaemia-b12...

All UK GPs will have access to BNF, probably a copy sitting on their desk or bookshelf if they want to check. Also possible to get own copy.

UK B12 treatment info is also in BSH Cobalamin and Folate Guidelines, about a quarter through guidelines.

b-s-h.org.uk/guidelines/gui...

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Hi,

Might be worth trying to find out what your original diagnosis was when treatment was started.

Access to medical records (England)

nhs.uk/NHSEngland/thenhs/re...

england.nhs.uk/contact-us/p...

nhs.uk/chq/Pages/2635.aspx?...

If you have a PA diagnosis, as wedgewood says, treatment is for life.

PAS members can print out leaflet "Treatment is for Life"

pernicious-anaemia-society....

BSH Cobalamin and Folate Guidelines mentions that testing b12 levels is irrelevant after treatment has started.

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Also something on this subject in summary of B12 documents in third pinned post on this forum.

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Thanks I'll have to check and be armed should the need arise . Was a bit worried about her comments as apart from the odd day have been feeling pretty ok on treatment I've received so far .

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If you are in the UK then the only oral B12 that is licensed for use is 50mcg cyanocobalamin to correct a dietary deficiency.

Very high dose oral (>1000mcg) can be quite effective at maintaining B12 levels in people with absorption problems (small amounts are actually absorbed outside the ileum in the rest of the gut so flooding the gut with enough B12 can result in enough getting through to maintain levels) but it doesn't work for everyone.

Hope that you do manage to get a result from the doctor you originally saw.

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