What resource can I show GP to show s... - Pernicious Anaemi...

Pernicious Anaemia Society

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What resource can I show GP to show some people need B12 injections more often than the standard 3 months ?

Mandymoos8 profile image

Good evening all - just wondered if any fair weathered b12 friends might be able to point me in the direction of any links which show a GP or nurse (in my case as they apparantly make that decision) that every patient is different with regards to the dishing out of B12 injections and should go on individual need. Mine has been good enough to allow 8 weekly injections but I’m not functioning at all well on this and feeling it needs to be more like 4 weekly. Many thanks in advance x

15 Replies

Hi,

UK B12 treatment info can be found in following links...

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

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

NICE CKS

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

If you are UK based then I think it will be hard for you to convince GPs to offer injections more often than every 8 weeks. Hopefully you have an enlightened GP. Many people on this forum with neuro symptoms struggle to get jabs every 2 months.

When you were first diagnosed, how many loading injections did you have?

For patients with neuro symptoms at diagnosis...

recommended UK loading dose pattern is a jab every other day for as long as symptoms continue to get better (this could mean loading jabs for weeks even months) followed by jabs every 2 months

For patients without neuro symptoms at diagnosis...

recommended UK loading dose pattern is 6 jabs over 2 weeks, followed by a jab every 3 months

I'm assuming that as you are currently on 8 weekly jabs that you have or had neurological symptoms and I wonder if you received the recommended pattern of loading injections for neuro symptoms, at the start of your treatment.

If you did not have a jab every other day for as long as symptoms continued to get better at start of treatment then maybe your GP would consider repeating loading dose pattern.

PAS website has info on the issue of some patients needing B12 more often than others

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

UK B12 blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

Blog post below may be relevant

b12deficiency.info/blog/201...

Some forum members resort to self treatment if their doctors are unable to prescribe B12 at the frequency they need.

I am not medically trained.

You can but try to persuade and convince your doctor that you need more injections . I bust a gut trying , without a result , whilst the numbness in my feet was creeping up my legs . I could only get 3 monthly .I had to resort to self-injecting . My feet are almost normal now . (Weekly injections over 3 years ) If you decide you need to S.I, come back here and we will give you the information you need . Best wishes .

How about a paper published in the British Journal of Nursing?

ncbi.nlm.nih.gov/pubmed/247...

This was a survey carried out by the PAS. Unfortunately only the abstract is available (but the doctors and maybe the nurses should have full access.

If you are a member of the PAS then you can read it here pernicious-anaemia-society....

Here's the important bit

a. Nearly two-thirds of respondents were dissatisfied with current treatment

b. 10% used a non-licensed form of B12 to supplement their prescribed

injections.

MTHFR61 your advice seems contra to much advice given on this forum and as such it worries me. In particular your statement that an extremely high level of B12 is damaging to the nervous system. Can you please state your research sources for this?

Please can you also let me know in what capacity you have seen people become mentally addicted to B12?

Foggyme profile image
FoggymeAdministrator in reply to JanD236

JanD236. Agree with your comments. The advice given in the reply you refer to was so inaccurate and dangerously misleading that it has been deleted.

Thanks for spotting and challenging 👍

Excuse me asking, but do you have a medical or scientific background to be giving this information and advice? If so could you give us the references which you are using.

Foggyme profile image
FoggymeAdministrator in reply to beginner1

beginner1. Agree with your comments. The advice given in the reply you refer to was so inaccurate and dangerously misleading that it has been deleted.

Thanks for spotting and challenging 👍

I could not disagree more ! It’s quite obvious that you are grossly misinformed .

Foggyme profile image
FoggymeAdministrator in reply to wedgewood

wedgewood. Agree with your comments. The advice given in the reply you refer to was so inaccurate and dangerously misleading that it has been deleted.

Thanks for spotting and challenging 👍

wedgewood profile image
wedgewood in reply to Foggyme

Thanks Foggyme . I was worried for some forum members who could have been upset by it . It didn’t upset me , just annoyed me a lot .

Don’t know if you read what the misguided MTHFR62 wrote to you . But it was totally inaccurate .If you did read it, I hope that it didn’t bother you . Don’t hesitate to come back for help . There are some wise owls on this forum. ( I’m not one of them!)

Mandymoos8 profile image
Mandymoos8 in reply to wedgewood

Hi wedgewood no I hadn’t actually read it before it was deleted. Strangely though the part I did see that showed up in my email sounded similar to what the GP was quoting to me ! Sounds worrying. I may resort to SI so any advice would be appreciated, thank you 😊

Thank you so much for your replies, I didn’t in fact get a chance to read the deleted post but have taken onboard what is there.

The nurse refused my injection which was six weeks since my last - as expected. I then had an appointment with a well woman doc for another issue and she questioned why I thought I had PA. I told her that I was informed by my usual GP that I had it when my B12 results came back as 81. She is questioning this for some reason and am having blood tests to confirm. My own GP Then called me to say on this occasion I can have the injection at six weeks but was quite patronising and said it was totally unnecessary and actually my levels are now so high that I shouldn’t need one for another three months. He said in fact most b12 deficient patients don’t teally need one more than once a year! And they are placebo - anything inbetween! He said as I am experiencing other neuro symptoms there must be something else wrong and so is referring me to a neurologist. He doesn’t believe lack of b12 causes any neurological symptoms.

Now very confused but will go along with this for the moment as at least I get my jab and maybe will get something from the neurologist to say I need them more regularly ? Maybe ?!

My GP said I was borderline PA surely that means I am ? He wouldn’t give me an answer.

There are hundreds if not thousands of us who self inject because of attitudes like that.

Some of us need daily jabs and have been successfully doing this for decades and several people that I know of, including a highly trained medical professional, have been on twice daily jabs for years to overcome the damage caused by the deficiency.

We buy our jabs from very safe online German pharmacies and our needles and syringes from companies like exchangesupplies.org or Medisave.

For more information on everything, please go to wedgewood's profile (by double clicking on her name) and look under her "replies". That will give you lots of good ideas, links and you will see contributions from lots of others too.

Please come back to us with more questions if you want to.

Because the processes that make the extra B12 work properly do so in conjunction with many other things, you may also find that you benefit from taking a broad spectrum multivitamin and mineral supplement plus extra folate, potassium, magnesium and iron.

It's good to Google these to get an understanding of the symptoms of deficiency and excess and find out what food sources you will like to eat and drink.

Well done for trying to find a better solution for yourself - I know it can feel daunting to start with but it's so good to be better it's worth it.

Hi again,

"He doesn’t believe lack of b12 causes any neurological symptoms."

Perhaps you could show him info below or include it in a letter.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord, access to PAS members only.

pernicious-anaemia-society.... See Page 2 of articles

If you're not a PAS member, there are other on-line articles about SACD resulting from B12 deficiency.

Blog post from Martyn Hooper's blog, mentions SACD

martynhooper.com/2010/09/21...

Might be worth presenting GP with a copy of BSH Cobalamin and Folate Guidelines with all the relevant passages about neurological damage circled.

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

Look at "Summary of key recommendations" at start of guidelines above.

Point 4 says that treatment should not be delayed due to risk of neuro damage.

BMJ B12 article

bmj.com/content/349/bmj.g5226

Next link has some useful info about neurological damage from B12 deficiency. See UK NEQAS B12 Alert in Point 5.

b12deficiency.info/b12-writ...

I am not medically trained.

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