Expected B12 levels after loading dose?

[Mumof3boyz]

Hi ive recently been diagnosed with b12 deficiency. My level was 125, and 2 months after 5 loading injections, they've raised to 580. Should they be higher after having the injections? I feel rubbish again and don't have next jab until 9october. The gp is going to call me today and I'm wondering with those high levels if he'll say i don't need the 3 mthly ones.

[Foggyme Administrator]

Hi Momof3boyz. My goodness, your levels were very low when diagnosed! You must have felt dreadful, and probably still do because healing and repair can take a while, especially if the deficiency has been present for some time.

First, 580 is very low following B12 injections - levels are usually really high following injections - often over the top of the reference range (mine are always over 2000 and we've seen them here as high as 5999).

Once injections have been given serum B12 levels cannot be used determine their efficacy or to to manage ongoing treatment.

All the guidelines state that following injections, no further testing is required (unless checking for low levels - and yours are) and that treatment should be according to symptoms, not serum B12 levels.

Here's some information about serum B12 testing - your GP may not be aware of this):

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

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

So...if your symptoms have returned or not improved, this is a sure indicator that you need more frequent injections.

If you have neurogical symptoms, after the loading doses you should remain in every other day injections until there is no further improvement - a more intensive regime of treatment that not many GPs know a out. See guidelines in the BNF in the link below (second or third paragraph down - you may have to,point it out as many doctors do not read that far down 😉.

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

(BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

Note: prescribing information refers to PA and those with neuro symptoms and GP may say 'but you don't have PA'. That’s a moot point. Treatment for PA is treatment of the B12 deficiency it causes. So the treatment for B12 deficieny is the same as the treatment for PA. B12 injections.

Here's information about the importance of an intensive treatment regime of treatment when neurogical symptoms are present. Also includes information about the safety of B12 injections when having this regime (some doctors have an entirely mistaken notion that B12 in high doses is toxic, addictive or a placebo - utter nonsense).

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

Good luck with the telephone call and post again if you need more help 👍.

[Mumof3boyz in reply to Foggyme]

Thanks foggyme, its all so confusing and new to me. Ill post back once i speak to my gp for more advice. As long as i knoe 580 is still too low, i can argue to keep the injections. Thanks

[Foggyme Administrator in reply to Mumof3boyz]

No problem. Some GPs don't really understand B12 deficiency or it's treatment so just ask if you need more help 👍

[Mumof3boyz in reply to Foggyme]

I will do thanks. They will give me my folate level too. What should that be?

[Foggyme Administrator in reply to Mumof3boyz]

Tests should be interpreted within the reference range for that particular test...ask your for the reference range too. If your levels are below the bottom of the range or hovering at the bottom, then you'll need to supplement with folic acid...if badly deficient it’s usual for a GP to prescribe 5mg folic acid daily then re-test after three months and re-assess if supplements should continue....and at what dose. Some people take 400mcg folic acid daily as a maintenance dose - some don't need to take any (supplements very much an individual thing').

👍

[Mumof3boyz in reply to Foggyme]

Ok thanks. Ive been trying to concieve and had 2 miscarriages and it's been over 2 years now. Wonder if this might be due to the b12, seeing as ive had 3 perfectly fine pregnancys previously. Ill ask and see what they say. Thanks

[Foggyme Administrator]

Mumof3boyz yes...birth defects and problems with miscarriage linked to B12 deficiency and folate deficiency.

More (brief) info:

webmd.com/baby/news/2009030...

[Foggyme Administrator]

Concerned...sorry, was aiming to reply to Mumof3boyz .

There are many causes of B12 deficiency other than following a vegan diet and insulin resistance is not the most likely cause of depreciating intrinsic factor. The 'most likely' cause is the autoimmune condition Pernicious Anaemia - which, together with the B12 deficiency it causes, is the main focus of this forum.

Not denying that insulin resistance is a potential issue for some people - just that it's not the first place to look when investiging B12 deficiency and it's many causes (PA, Crohn's, Coeliac Disease, IBS, GI surgery, Heliobactor Pylori, infection with parasites, medications that reduce absorption of B12, inborn errors of metabolism, use of nitrous oxide...to name but a few).

Addressing any potential B12 issues based on the notion of insulin resistance is not an effective way to manage or treat PA or B12 deficiency.

So, I'm not saying that insulin resistance is not important...just that it's not the most relevant or appropriate place to start in terms of diagnosing and treating B12 deficiency.

Please can we not 'hijack' mumof3boys post with extended discussions related to insulin resistance. If you'd like to further explore the possible connection between insulin resistance, PA and B12 deficiency, please put up a new post so that forum members who have an interest can respond there. You'll get a much better response if the 'topic' is not hidden in another thread - and I'd also be curious to hear what others say).

Many thanks.

👍

[Mumof3boyz in reply to Foggyme]

So the receptionist called me and said my levels are ok at 586 and folate 7.2, so no further action. Not sure what that means because i already have an appointment pre booked for my 3 mthly jab. Im going to get an app to have a chat on Friday and see what they say.

[Foggyme Administrator in reply to Mumof3boyz]

What the receptionist means is that your levels are within the ‘normal' reference range...but as in my reply above, normal reference ranges no longer apply once injections have been started.

A serum B12 level of 586 following loading doses is very low...and can't be used as a guide to treatment.

Strongly suspect you should be on the intensive every other day regime... most certainly if you have neurolgical symptoms.

Good luck with the doctor on Friday...print and take evidence (from links above) with you and make bullet points of all the things you want to say - I always forget unless I do that 🙄😉. Helps if you can take someone with you. Doctors always more attentive and less hostile if there is a witness present. Sadly.

Post if you need more help trying to get treatment 👍

[buckone]

Don't know too much about this but is the figure your active b12 level?or what part of it is? NHS doesn't routinely test "active". I had to go private.