Different B12 injections?

[Babette]

Hello,

My mum has B12 injections every 3 months following an ileostomy. She used to be full of energy after each one but since changing GP practice 6 or 7 years ago she no longer feels the benefit. Are there different formulas that could cause this? I keep asking her to get printouts of her blood tests but she never does.

She now has to take her prescription to the chemist rather than the GP get it directly. Is there a better brand / type?

Many thanks.

Bx

[clivealive Forum Support]

As far as I'm aware Babette the cobamalin content is the same whether it's cyano, hydroxo or methyl.

Perhaps your Mum needs to have her Iron and Folate levels checked as she may be deficient in one or other of these and the three work together or (of course) she may need more frequent injections if she has neurological symptoms.

I'm not medically trained but there are others on here who will give you good advice

[Babette in reply to clivealive]

Thanks, clivealive. I've asked her to do that before but telling her that someone on a forum said to get them checked might actually get her to do it.

[Sleepybunny]

Hi,

List of B12 info that might be of interest

1) Pinned posts on this forum

2) PAS website

pernicious-anaemia-society....

PAS tel no [phone]

Martyn Hooper's blog

martynhooper.com/

3) B12 Deficiency Info website

Lots of B12 info and an interesting blog.

b12deficiency.info/

4) B12d.org website

b12d.org

5) Book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" By Martyn Hooper.

Martyn Hooper is the chair of PAS. He has written two other books about PA and B12 deficiency. I also found "Living with Pernicious Anaemia and Vitamin B12 Deficiency" useful due to case studies in it.

6) Book "Could it Be b12" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive book about B12 deficiency, with lots of case studies.

7) BMJ b12 article

bmj.com/content/349/bmj.g5226

8) BNF Chapter 9 Section 1.2

evidence.nhs.uk/formulary/b...

Info on UK B12 treatment. A person with B12 deficiency with neurological symptoms is supposed to have more intensive treatment, see BNF link.

"has B12 injections every 3 months following an ileostomy"

A person with b12 deficiency with neuro symptoms eg pins and needles, tingling, balance issues, memory problems, tinnitus......... there are many more possible neuro symptoms........should have injections every 2 months. In UK , B12 deficient patients with neuro symptoms should also receive more intensive loading injections at start of B12 treatment.

Doe she have any neuro symptoms?

pernicious-anaemia-society.... see PAS checklist

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Details of UK B12 treatment info is also in "BSH Cobalamin and Folate Guidelines".

9) BSH Cobalamin and Folate Guidelines

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

Has your mum been checked for other vitamin deficiencies eg Vitamin D?

Has she has a recent full blood count result?

labtestsonline.org.uk/under...

I am not a medic just a person who has struggled to get a diagnosis.

[Babette in reply to Sleepybunny]

Thanks Sleepybunny. By "different formulas" I was meaning something along the lines of one pharmaceutical company perhaps being more potent than another.

She has pins and needles but has been told it's caused by a problem with her neck. I think this is probably correct.

She does have a vitamin D deficiency but is taking supplements.

Following on from clivealive's reply, I've asked her to get her iron and folate tested and to get the results. (I've asked her to do it numerous times but, being her daughter, I know nothing.)

[clivealive Forum Support in reply to Babette]

Injection vials bought from abroad may well be of different "volumes" but as I understand it both cyanocobamalin (which I am on) and hydroxocobamalin are in the UK prescribed in 1mg doses.

[Sleepybunny]

Hi,

I was wondering if she is getting enough B12. People's needs can change over time and some people find NHS level of B12 treatment is not enough for them.

You mention an illeostomy but it's possible she may have more than one cause of B12 deficiency at the same time. For example, some medications can affect levels of B12 and folate.

Causes of b12 deficiency

b12deficiency.info/what-are...

The symptoms lists I included above mention a variety of neuro symptoms and if she has a number of these, she might be able to argue for her injections to be increased from every 3 months to every 2 months.

See BNF link and BSH Cobalamin guideline slink for more details of UK B12 treatment.