B12 retested: Hi all I was diagnosed... - Pernicious Anaemi...

Pernicious Anaemia Society

32,293 members23,499 posts

B12 retested

Sbmaurice profile image
4 Replies

Hi all

I was diagnosed with b12 deficiency 3 months ago and had a b12 level of 104 (normal range over 130). I had 6 loading doses and after the 6th I found my symptoms subsided (which included neurological). After 6 weeks I felt awful again and went back to gp and asked if I had PA and she basically said it didn't matter as treatment the same (every 3 months). I asked if I could have more frequent injections as I could feel the effects of the injections had warn off and I was using 1200mg of b12 spray everyday. She was reluctant and said she would do more blood tests first and if they were normal she would refer to a haematologist. All blood tests fine but she also retested my serum b12 and it was 600.

So I hope she has made a referral now, but my question is after 6 loading doses and 1200mg of b12 spray 600 is normal, but is it still low?

Written by
Sbmaurice profile image
Sbmaurice
To view profiles and participate in discussions please or .
Read more about...
4 Replies
fbirder profile image
fbirder

Once you start injections further blood testing is pointless. With neuoroligical symptoms you should have had more loading doses and injections every 8 weeks, not 12 weeks. Ask her to check the BNF.

Sleepybunny profile image
Sleepybunny

Hi,

Some B12 info that might be of interest.

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

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

NICE CKS

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

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

I am not medically trained.

Gambit62 profile image
Gambit62Administrator

serum B12 measures the amount of B12 in your blood - not how well it is being used by your cells. Its a potentially useful test for diagnosing a b12 absorption problem and, if interpreted properly, for helping to diagnose a B12 deficiency, but it isn't a test that is useful for managing B12 levels after loading shots.

an injection basically puts several years worth of B12 into your blood. The level then decreases, mainly as the excess amount is removed by kidneys - the rate of removal depends on how much B12 is in your blood and is higher if you levels are higher.

However, this is only the level that is in your blood and its no measure of whether you cells are getting enough. A significant number of people seem to react to high levels of B12 in their blood by making the process that allows B12 to get into your cells less efficient and the net result is that some of us need really high levels of serum B12 to make sure enough gets through to cells after loading doses - no clear explanation for this but some interesting research going on at the moment.

National standards have just been changed to be 2-3 months for frequency of injections but as fbirder says, as you have neurological symptoms the BCSH guidelines (which your GP can access through the BNF would be for maintenance to be 8 weekly, though from what you say this still isn't quite frequently enough for you.

shelly2shoes profile image
shelly2shoes

b12deficiency.info you will get all the advice you need from this website.

Not what you're looking for?

You may also like...

b12 retested by GP after loading dose.

I had blood test end of August this year due to feeling unwell with fatigue, pallor and faintness ,...

When to retest B12/folate/ferritin levels post-supplementation?

be tested in 4 months but that B12 isn't usually re-tested until 6 months post-loading injections....

Is there EVER a need to retest B12 levels if already on treatment?

everything I said, did a through examination, and said he wanted to run some more blood tests…...

GP visit following B12 retest

recall I had a low B12 of 129 (range 180-914). I stopped taking reflux meds but after 6 weeks the...

Recent retest B12 over 1,000

PA in February he recently retested my b12 and did another MMA test, my b12 serum went from 300 in...