what is a normal level

[elainelxx1976xx]

hi all my b12 levels where 145 and i received loading doses and my levels only went up to 250, i have been receiving injections every 12 weeks but in december i asked for bloods to be done as all symptoms where getting worse the nurse took my bloods 2 weeks after my injection and my b12 came back at 515, i have moved house and had to register with a new gp who i saw yesterday and she is wanting to stop my b12 injection as she said 515 is a normal level,so looking for some advice on what is normal thanks

[clivealive Forum Support]

Hi elainelxx1976xx do you have any idea why your B12 levels were low in the first place?

Ask your doctor to get hold of your notes.

On the face of it your level is now "NORMAL" (I hate that word) but your new doctor should be treating your symptoms - not just looking at the computer screen.

If you can get to see a doctor please also ask him/her to check your Folate level as this and B12 help your iron to make red blood cells and to function properly.

I am not a medically trained person but I've had Pernicious Anaemia (a form of B12 deficiency) for more than 46 years.

I wish you well.

[elainelxx1976xx in reply to clivealive]

hi the only thing i can think that would make my levels low is maybe the metformin i use for my diabetes, thanks for your reply

[clivealive Forum Support in reply to elainelxx1976xx]

Well that's one medication that will affect absorption - I'm on it too - but as I'm permanently on B12 injections I can "ignore" Metformin's side effect but you may need to supplement with one form or another to keep your level up.

Remember I'm not a medically trained person.

[fbirder]

Print out these recommendations from the British Committee on Standards in Haematology. onlinelibrary.wiley.com/doi...

Highlight this phrase:

Maintenance treatment for patients presenting without neurological deficit is with hydroxocobalamin 1000 lg i.m. every 3 months. Those with initial neurological deficit should receive hydroxocobalamin 1000 lg i.m. every 2 months. No further testing for cobalamin levels is required.

[elainelxx1976xx in reply to fbirder]

thanks for your reply and i will print off this information for my next appointment

[Foggyme Administrator]

Hi elainelxx1976xx

Just to add to Fbirder comments...

A B12 level of 250 following six loading doses and 515 two weeks after your last injection is very low. Following injections, it’s usual to see B12 levels that are very high...sometimes off the measurable scale (mine are always over 2000).

Whilst your bloods are within the 'normal' range, this range only applies to those who are NOT receiving B12 injections, and others have said, once injections have commenced, testing is no longer required - unless looking for low levels. And within the context of having already having received B12 injections, your levels are too low (not 'normal', as your GP suggests). And if you are still symptomatic (which you are), this indicates that you do need more frequent injections.

This is particularly important if you have neurological symptoms, since irreversible neurological damage can occur if B12 deficiency is under-treated (though I'm not suggesting that you have have irreversible neurological damage - just that it can occur).

It's a good idea to print the guidelines in the link that Fbirder's left for you, highlight the relevant section, and take them along to discuss with your GP.

It's also worth noting that that if you had neurolgical symtpoms when originally diagnosed, following the loading doses, you should have remained on every other day injections until no further improvement (a more intensive regime of treatment that most GP's are not aware of). If this step applies to you but was missed in your treatment, certainly worth asking your new GP to prescribe this. (The fact that your symptoms are re-occurring before your next injections is due is a clear indicator that you need more frequent injections).

This regime is covered in the BNF guidelines in this link (about the third paragraph down):

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

(BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

And here's a couple oflinks to,information about serum B12 testing and the safety of B12 injections for those who need an intensive treatment regime to get and stay well:

stichtingb12tekort.nl/weten... (Problems with Serum B12 Test)

stichtingb12tekort.nl/weten... (Testing B12 During Treatment)

stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)

There's also more information in the pinned posts section (second and third PAS pinned posts) - to the right of this page when you log on or at the top or bottom of the page if using a mobile phone. Well worth a read - might help in discussions with your new GP.

Also worth noting that serum B12 levels do not have any bearing on the efficacy of treatment once injections have started (as discussed above). So...GP should be treating according to the presence of symptoms of your already proven B12 deficiency - not according to your serum B12 levels. Which are excessively low following injections.

Good luck and post again if you need more support.

👍

[elainelxx1976xx]

thank you very much for the great information and for taking the time to reply i shall be printing off some of this information and be taking it along to my next appointment with me