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Pernicious Anaemia Society

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Loading dose

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Hi everyone, I hear a lot of you say that when you first started your B12 injections you started with a loading dose, can you tell me what you mean by this!

I have been having a 1000 dose every 2 weeks and am now on my 5th injection, the symptoms have definitely eased but when I had to go 3 weeks (due to holiday) between the symptoms came back and I felt really rough for a couple of weeks again.

Do you think that was because I have not reached an optimum level as yet, I have to pay privately for my injections as my doctor said my levels were fine at 397

Thanks x

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Sleepybunny profile image
Sleepybunny

Hi,

My understanding of loading doses is that they are a series of B12 injections given close together to get B12 levels in the blood up quickly.

These are followed by maintenance doses,,,B12 injections given at longer intervals to keep B12 levels up .

Link below outlines two patterns of B12 treatment in UK, one for patients without neuro symptoms and one for patients with neuro symptoms.

BNF Hydroxycobalamin

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

I see from your other threads that your B12 result was well within range.

I can tell you from personal experience that it is possible to have severe B12 deficiency with an in range serum b12 result. Most of my B12 test results were from 300 - 500 ng/L before treatment and I had got to the point of dementia type symptoms and spinal symptoms.

UK guidelines indicate that someone who is symptomatic for B12 deficiency should be treated even if their serum B12 result is within normal range.

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

My understanding of above document is that B12 deficiency with neuro symptoms present should be treated with injections even if cause is dietary.

Summary of above document

pernicious-anaemia-society....

Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.

stichtingb12tekort.nl/engli...

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

Low dose cyanocobalamin tablets are sometimes used to treat dietary deficiency.

BNF Cyanocobalamin

bnf.nice.org.uk/drug/cyanoc...

There are moves across UK to put more patients onto high dose oral cyanocobalamin tablets as an alternative to IM injections. Although some forum members manage on oral tablets, I personally have grave reservations over this.

BNF Hydroxycobalamin

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

See section on patients with "Neurological involvement" if neuro symptoms are present.

NICE CKS B12 deficiency and Folate deficiency

cks.nice.org.uk/anaemia-b12...

cks.nice.org.uk/topics/anae...

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 5 in above link is about being symptomatic for B12 deficiency with an in range B12 result.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

B12 article from Mayo Clinic in US

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals have.

Two useful B12 books

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

BNF treatment info in book is out of date. See BNF link in this reply for up to date info.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

Links below are to threads where I left some detailed replies with lots of B12 info which you may find useful eg B12 deficiency symptoms lists, UK B12 documents, causes of b12 deficiency, B12 books, B12 websites, B12 articles and a few hints on dealing with unhelpful GPs.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained just someone who suffered with unrecognised B12 deficiency for years.

Gambit62 profile image
Gambit62Administrator

please note that practice with loading doses varies from country to country. The idea behind loading doses is to build up levels quickly, and maintenance doses are then intended to maintain them. Do you know what type of B12 is being used?

in reply to Gambit62

No I don’t, I will definitely ask next time

ClareP5 profile image
ClareP5

Hi, FYI, I was in range due to supplements! So I SI EOD and have done for the last year.

There appear to be 2 issues and I appear to have both! Many don’t absorb B12 sufficiently and for older people this just gets worse (generally speaking). Also according to Dr Chandy’s book there’s a huge difference in recycling of B12, with some people recycling the majority of their intake.

I assume I’m in the don’t recycle much group, like others. We need to keep up with injections more regularly.

Good luck.

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