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Pernicious Anaemia Society
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b12 without loading dose?

Can anyone give me any advice on b12 injections ? My nuerologist said my levels were low and sent a letter to my doc, stating immediate b12 injections commence, however when I went to start the loading dose, I was told by a nurse I did not need it, however 18 months later due to my persistance in asking for the loading dose I have received it, I am on 12 weekly injections for life. I have been diagnosed with ataxia and am very angry. Is the loading dose always essential?

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Hi auntiesally "loading dose" refers to the frequency (not the strength) of injections and are usually prescribed to those with a deficiency of Vitamin B12 or Pernicious Anaemia.

Without knowing what your B12 level was when the Neurologist recommended the injection it is difficult to comment on why the nurse declined to give it.

Please ask to have your Folate level checked ad this and B12 work together to help your iron make red blood cells.

Well done for your persistence in getting the 3 monthly B12 jabs and I hope it helps with the ataxia.

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yes I had a blood test then was asked to go for another one as the 1st one said low folate on the results, the second one I had a week later was normal, so I do not have to go back? My b12 levels were 212.

Thanks for your helpful and friendly reply

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I was originally not given loading doses either. My biggest problem was that the once a month cyano injections that I was being given weren't frequent enough for me. But even with that problem, I still experienced a very slow benefit from the injections. So I would say that they are not truly essential, but they are very helpful and, if you can get them, great. I did eventually get loading doses. I also eventually got the frequency of my injections increased. Both helped. I think the latter helped me more than the former.

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Are you still on cyano Galixie? So am I over 45 years on - as I did not get on with hydroxo when it was introduced in the 1980s. I'm now down to every three weeks after a lot of hard negotiating with my "one size fits all" doctor

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Yes, I'm currently on cyano. I was switched to methyl for about a year, but switched back to cyano because it seems to work best for me. I do best on once a week injections. It did take me a few years to finally get my treatment sorted out, so I hope it doesn't change again anytime soon.

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It just shows that there's not "one size fits all" which seems to be the mindset of many in the medical profession.

Best wishes

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Hi,

What did neurologist think had caused your low B12?

Have you got a diagnosis of PA (Pernicious Anaemia)?

Risk factors for PA and B12 deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

My understanding (I'm not a medic) is that in UK, B12 treatment should follow the pattern laid out in

1) BNF (British National Formulary) Chapter 9 Section 1.2

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

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

BNF seems to concentrate on megablastic anaemia but BSH Cobalamin and Folate Guidelines seem less specific.

2) BSH Cobalamin and Folate Guidelines

UK b12 treatment info about a quarter through document.

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

I'd recommend reading the whole BSH Cobalamin document.

"when I went to start the loading dose, I was told by a nurse I did not need it"

"I am on 12 weekly injections for life"

I'm surprised that in view of your neuro symptoms (ataxia) you did not have loading doses until 18 months later.

Were you given the B12 loading regime for those with neuro symptoms?

In UK people with B12 deficiency with neuro symptoms, are supposed to get a loading injection every other day for as long as their symptoms improve (which could mean loading injections for weeks, even months or years if improvement continues) then it's an injection every 2 months.

If you only had 6 injections over 2 weeks followed by an injection every 3 months...this is the standard pattern of treatment for those with B12 deficiency without neuro symptoms.

Do you have other neuro symptoms?

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Untreated or inadequately treated B12 deficiency may lead to permanent neuro damage including problems with spinal cord.

Some people with B12 deficiency may be at risk of developing SACDSC, sub acute combined degeneration of the spinal cord.

There is an article about SACDSC in library section on PAS website available to members.

This story on Martyn Hooper's blog mentions SACDSC. Martyn Hooper is the chair of PAS.

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

Pernicious Anaemia Society (PAS)

Some people on forum join the PAS.

They can sometimes intervene on behalf of their members by writing letters. They can pass on useful info about PA.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769 717 answerphone so messages can be left, can take a few days to get a response.

Other B12 info

1) Pinned posts on this forum.

2) BMJ B12 article

bmj.com/content/349/bmj.g5226

3) Book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. He has written two other books about PA and B12 deficiency.

I gave a copy of this book to my GPs as it's up to date with current UK b12 guidelines.

4) Book "Could it Be B12" By Sally Pacholok and JJ. Stuart (USA authors)

Detailed book about B12 deficiency with lots of case studies, think it mentions ataxia.

Unhappy with treatment?

Link about writing letters to GP about B12 deficiency.

b12deficiency.info/b12-writ...

Point 1 is about undertreatment of neuro symptoms.

CAB

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and treatment.

hdapatientcaretrust.com/

I am not medically trained, just someone who has struggled to get a diagnosis.

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My G.P. doesn't believe in loading doses either. Despite the symptoms and positive tests for P.A., I was given one jab and told to come back in three months. After not feeling any better and begging for the loading doses time after time, I gave up asking and started injecting myself, which was the only way that I was going to get the treatment that I needed.

Why, oh why, won't G.P's follow the guidelines - it would save a lot of grief and suffering, and save the NHS a fortune in the long run! But there again, foresight never was an NHS strong point.

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Words fail me - how is a nurse allowed to override the neurologist's important and vital advice on neurological treatment !

BNF guidelines for neurological symptoms are that injections should be given every other day until no further improvement......

Well done though for persisting auntiesally - I really hope you see improvement soon. You may have seen the Dutch research in the pinned posts here, which shows how important it is to have adequate treatment.

I took matters into my own hands - after three months of SI every other day, I am just beginning to see improvements in all symptoms. I try to avoid any stress though as I know it really sets me back.....

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I was diagnosed with a B12 deficiency recently and was referred for one injection only. I went backwards and forwards to the doctors for over a week to get it changed to loading doses, (which I had to pay for, by the way). In the end I had to scream that my grandmother had died of complications of B12 deficiency in the 1940s and my mother was hospitalised with it whilst pregnant with me to get them to understand the severity of how bad I felt and they relented, eventually.

It's totally rubbish that we're treated this way. All I'd say is, don't be scared of being bolshy.

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