B12 still low at 117 two months after loading doses :(

[Clafairy101]

Hi all, can anyone explain why my B12 levels could still be low at 117 six weeks after the end of my six loading doses. Interesting they were exactly 117 in august when I was first diagnosed but the blood test on oct 28 came back again at 117. I have an appt with the gp on Tuesday but if anyone has any experience of this I'd love to hear from you. Thanks 😊

[fbirder]

I'm afraid I have no idea, but it is intriguing. Please let us know what the doc says?

[Clafairy101 in reply to fbirder]

Thanks! Will update on here when I know more.

[Gambit62 Administrator]

More likely that they aren't still low but that they have become low again.

The rate at which people remove excess B12 from the blood is very variable. The normal regime of 6 loading doses followed by 3 monthly maintenance shots is based on statistical averages - sort of. On average people retain cyanocobalamin for about 1 month - some research in the 60s/70s that showed that on average people retain hydroxo twice as long as cyanocobalamin ... no clear evidence at all for the 3 months currently used in the UK where no neurological involvement. The same study showed that significant numbers of people retain cyano twice as long as hydroxo so the problem is applying statistical averages to treat everyone rather than treating people like individuals.

Conclusion would be that you need monthly maintenance rather than 3 months, or even 2 months though getting that might be difficult because of the standard response to licensing arrangements (hydroxo is only licensed for use every 8 weeks in the UK - even though there's no toxicity issues).

[Clafairy101]

That's really helpful. I felt great a week after my final loading dose for a whole month and then within a week I had crashed and get out of the fog. This is proving tricky with a young family and a full time, demanding job. I'll see if my doctor can be persuaded to change treatment or to monthly maintenance.

[clivealive Forum Support]

Also Clafairy101 ask to have your Folate level checked as this gets "used up" processing the B12.

[LCW8 in reply to clivealive]

Oh there you are Clive! You replied to a question I put on this site about 3 days ago, I'm afraid I lost it along with your reply.

You mentioned regards folate in leafy green vegetables etc. (if that helps ring a bell!)

Anyway, I just wanted to thank you for your input. Cheers!

[clivealive Forum Support in reply to LCW8]

Hi LCW8

I think I must have said something along the lines that we get B12 naturally from animal products and Folate from vegetables which makes sense of the good old fashioned "Meat, potato, greens and gravy" meals from yesteryear.

My mother was always telling me to "Eat your greens Clive"

[LCW8 in reply to clivealive]

True. But I think I must have trouble assimilating B12.

My reading was 102 with acceptable level 148-650.

This is all new to me.

I was told I was anaemic at age 14 (ate meat greens etc daily..yesteryears diet,) and now at 67 I have PA.

I've been on B12 injections one weekly for four weeks and then it'll be 1 a month. I have my last weekly injection this week. Can't say I've noticed much difference. Hoping it will come good.

I have suffered PA for decades and not been diagnosed.

So, I wonder what helps assimilate the stuff..asides from folic acid which I take daily (1 tablet.)

Oh well, I'll give it a bit of time.

Thanks Clive.

[LCW8 in reply to LCW8]

Never was given anything at age 14 for the problem, except inorganic iron which constipated me, so I threw it away.

No one knew about B12 deficiencies back then I think.