Scientific paper needed re ignoring h... - Pernicious Anaemi...

Pernicious Anaemia Society

32,319 members23,535 posts

Scientific paper needed re ignoring high serum B12 levels following loading doses

LovesLuna profile image
3 Replies

My daughter went back to her Gp as she relapsed back to being totally exhausted and unwell and mood swings once the loading doses were complete. We are not in the Uk and the protocol here is different, 7 daily injections, then once a week for a month and then monthly. Helpful advice on here suggested she have her folic acid and ferretin levels checked, which the Gp did and it seems she also checked serum B12 levels. She has just telephoned to say that the B12 levels are way too high at 2000 and that we need to stop the weekly injections straight away and wait at least a month before continuing. I tried to explain that the B12 levels are meant to be high at this stage of treatment, but it was difficult to sound convincing. Please can someone post a scientific link- medical research paper, health authority guidelines, or something - anything "medically authori

tative" that cannot be dismissed.

And now I find myself questioning if because the levels are so high, mean that she should go on to monthly now ? Not because I think the high levels are bad, I know that B12 cannot be overdosed - but because maybe she doesn't need such frequent dosing anymore to maintain her B12 ?

Written by
LovesLuna profile image
LovesLuna
To view profiles and participate in discussions please or .
Read more about...
3 Replies
LovesLuna profile image
LovesLuna

Thank you ! Yes, the Stiching B12 Tekort and B12 Research Insitute info is just the ticket. My daughter is now self-injecting at home on Gp's prescription, and we have been given 20 ampules. So we can continue with the last two weekly injections as planned, and longer if needed - and the Gp would actually be none the wiser. However I would much rather she be correctly informed and we work together on the same page.

We are 5 hours behind the UK here, so yes, everyone in their beds now ... except for you ! You are up very late !

Polaris profile image
Polaris

This latest BMJ research document could help (see bottom of page 4 under ''How is Response to treatment assessed' :

cmim.org/pdf2014/funcion.ph...

"Cobalamin and holotranscobalamin levels are not helpful because they increase with vitamin B12 influx regardless of the effectiveness of treatment, and retesting is not usually required."

Good luck Lovesluna - the above is peer reviewed and is backed with references to research papers.

Foggyme profile image
FoggymeAdministrator

Hi LovesLuna. Here's a link to more information that might help (Stichting B12 Tekort and the B12 Research Institute). Also provides links to other relevant research papers:

stichtingb12tekort.nl/weten...

Good luck to you both 👍

Not what you're looking for?

You may also like...

Hi Again - b12 and Peripheral Neuropathy (PN) - its wasnt the Alcohol?

Hi again lovely folks, and a big thanks to those "constant" heroes in this forum; who stick around...

AUGH!

I have been battling for about 10 years with numerous health issues and was finally diagnosed about...

Bittersweet Bonds - Pernicious Anemia and the Doctor-Patient Dance

Not sure if this is any good but as I was hating my doctors it occurred to me how much I need them....

Am I wrong?,

My doctor is trying to make out I'm crazy. Please can people clarify if my understanding is correct...

seeing neurologist, advice on b12 injections welcomed…

hi all? have been prescribed with PA. My ferritin levels are normal - 177 Vitamin D- 70....