low levels despite frequent injections?

[Merlotponty]

My b12 levels are still low despite 8 months of frequent injections. My doctor doesn’t know why and I have to see a hematologist. has this happened to anyone else? Any thoughts as to what it might be?

[MrsTuft]

When you say frequent - what have you had, at what frequency and for how long?

[Rexz in reply to MrsTuft]

Yes, AND what was your B12 level from your first test before you started injecting?

[Gambit62 Administrator]

The retention period for B12 varies considerably from individual to individual - so for some it can take years for B12 to clear and for others it can take much less than the 1 month (cyano) or 2 month (hydroxo) that are the averages that everyone is assumed to comply with.

As per others would be useful to know how frequent your injections are and when your levels are being measured after injections.

To be honest the best way to treat is to go by symptoms and when they return and use that to determine frequency as even high levels of serum B12 don't necessarily mean that B12 is getting into cells where it is needed.

[Sleepybunny]

Hi,

Welcome to the forum.

Like the others, I'm interested to know how often you get B12 injections and what type of B12 is in them.

Some forum members find they need far more B12 than doctors suggest to keep symptoms from coming back.

Have you got recent results for folate, ferritin (and other iron tests) and Vit D?

Forum members often report these deficiencies. it's quite common here to also have thyroid issues. Have you had any thyroid tests? Thyroid UK forum on HU is a good place to post thyroid results.

A few B12 websites

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has overseas members.

pernicious-anaemia-society....

Testing for PA

pernicious-anaemia-society....

B12info.com

b12info.com/

B12 Awareness (US website)

b12awareness.org/

Stitchting B12 Tekort (Dutch B12 website with English articles)

stichtingb12tekort.nl/english/

B12 Institute - Netherlands

Has useful lists of causes and symptoms.

b12-institute.nl/en/home-2/

Two useful B12 books

Published a few years ago so some bits might need updating.

Could It Be B12?: An Epidemic of Misdiagnoses by Sally Pacholok and J.J. Stuart (US authors).

Very comprehensive. Lots of case histories.

What You need to Know about Pernicious Anaemia and Vitamin B12 deficiency

by Martyn Hooper, former chair of PAS (Pernicious Anaemia Society)

Does your doctor know about Club B12?

This is a group of researchers and doctors across the world looking into B12.

They have regular zoom meetings.

club-12.org/

I'm not medically trained.

[Wheat]

hello, i agree with other posts.

the NHS one size fits all maintenance dose of 3 months has no clinical validity, is not suitable treatment for all, no one is an average. I had 3 symptoms back 3 days after my last loading dose, so s.i. daily.

Doctors frequently are ill informed about B12D/P.A.

Without further information, it is most likely you are not receiving frequent enough maintenance doses so you levels continue to decline. Plus as sleepybunny says you could have other deficiencies as well.

[Sleepybunny]

Hi again,

Do you mind me asking which country you are in?

Patterns of treatment and type of B12 used can vary between countries.

Knowing which country you are in may help people to post the most relevant info.

If you're in UK, I left a detailed reply on this recent thread which may be of interest.

Help Needed! Have I got Pernicious Anaemia?

healthunlocked.com/pasoc/po...

In UK, NICE (National Institute of Health and Care Excellence) published a new B12 deficiency guideline on March 6th 2024. Worth reading if you're in UK.

nice.org.uk/guidance/ng239

I have some reservations about it but there are some good bits.

More B12 info in pinned posts. Some of the info in pinned potsts may be specific to UK.