When or should I be checked - Pernicious Anaemi...

Pernicious Anaemia Society

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When or should I be checked

shal61 profile image
6 Replies

Just wondering if anyone can tell me I have now had my 2nd 3 monthly jab . Because my gp has not got me to test my b12 levels since although she said my levels were fine at 180 but my symptoms have improved, but by the 2nd month I really feel rough again.

Thanks in advance.

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shal61
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clivealive profile image
clivealiveForum Support

Hi shal61 you sound like so many on here (including myself) that you need more frequent injections. The problem is, if you have a "one size fits all" doctor, getting him/her to agree.

Testing serum B12 levels once injections have started is pretty pointless unless it comes back LOW.

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...

Which means your doctor should treat your symptoms regardless of test results if you do have one.

Do you know what your Folate level is?

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

Gambit62 profile image
Gambit62Administrator

a few people do clear B12 from their systems very quickl so for them a serum B12 test would show a need for more frequent tests but in general test results are going to come back high or in 'normal' range - the real point is that 'normal' range doesn't apply after B12 loading and whilst on maintenance doses as the shots themselves introduce a factor that means you are no long part of a 'normal' population.

The BCSH guidelines don't recommend repeated testing and treatment based on serum B12 for absorption problems, so shal61 your GP would not be doing anything wrong in not monitoring your B12 levels post loading ... though they could well be doing a lot wrong if they are ignoring/dismissing symptoms as a guide to how frequently you need B12 shots.

shal61 profile image
shal61 in reply toGambit62

Thanks for all the replys my levels back in July when I was tested

Plasma folate level 6 ng/mL [4.0 - 20.0]

I don't seem to lose the vibration of my body it lessens for a few weeks then it's back. Tinitus , sleep ,hot legs and feet to frozen feet and confusion.

Not seen Dr since August when I started the loading doses.

It was not mentioned to see how I was going .

Gambit62 profile image
Gambit62Administrator in reply toshal61

many people find that 3 months is just too long - so many of us end up supplementing and treating ourselves. There isn't actually any solid scientific evidence that anyone has ever been able to produce to justify 3 months and in many other countries (eg Germany) the recommendation is monthly.

Your folate levels weren't brilliant - so it is possible to become folate deficient when you start treatment and processes that need both folate and B12 start to run again. The best source of folate is dietary - especially green leafy vegetables - so if your diet isn't brilliant for these then you may need to up your in-take. If you have plenty of the relevant foods in your diet then you may want to think about taking some supplements - a supermarket supplement of 400mcg of folic acid is generally good enough for most people.

shal61 profile image
shal61 in reply toGambit62

Thanks very much, I have to take antacids because of my hiatus hernia which is inoperable and that lessens absorption I hear.

Thanks again Gambit62

Gambit62 profile image
Gambit62Administrator in reply toshal61

yes, PPIs such as omeprazole can interfere with B12 absorption - and lowering acidity can generally affect how efficiently you extract nutrients from your food

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