B12 advice

[speckles70]

I have gp appointment this week to discuss test results and my B12 deficient at 221. Should I expect to receive loading injections / referal to neuro or just be told to self supplement at this level. Iev popped over from TUK site as hypo. Just like to no what gp advises at appt will b correct treatment.

I have many symptoms

thanks

[Fennella02]

Hi speckles70 . Do you know what the normal ranges are for your B12 test as this will influence your GP's course of action. I can only speak from my own experience but my GP tested at intervals over the course of 18 months as my B12 slid from 170 to 108 (range 120 +) and it was only once it reached this low level that she suggested intervention with loading doses of B12 and she absolutely did not want me to take sub-linguals/tablets although she admitted that she didn't understand it enough to explain why I shouldn't.

[clivealive Forum Support in reply to Fennella02]

Hi Fennella02 what your doctor did to you was iniquitous.....

[Fennella02 in reply to clivealive]

Hi clivealive . I confess that I had to google the meaning of 'iniquitous' but yes, I agree. The double whammy is that I was also under a large centre of excellence for Lupus who had already asked her on 2 occasions to treat my B12 of 170 which they considered too low but still she didn't . I can only guess that my GP practice has strict constraints on when they are allowed to intervene.

[clivealive Forum Support in reply to Fennella02]

Apart from a five minute slot with a nurse B12 treatment is probably one of the cheapest in a doctor's budget.

I've had over 600 (due to P.A) during the last 45 years and I'm still "clivealive" at 75.

I really do hope you can persuade your doctor to at least give you a trial run of B12 injections.

[speckles70 in reply to clivealive]

me too 😊

[clivealive Forum Support]

Hi speckles70 it will largely depend on why you are deficient and how "clued up" your doctor is on Vitamin B12 Deficiency.

You say you have "many symptoms" I suggest you make a list of them and present it to your doctor and as him/her to treat you in accordance with the following (especially the highlighted bit):

Treatment of cobalamin deficiency

"Current clinical practice within the U.K is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form outlined in the British National Formulary, BNF,

Standard initial therapy for patients without neurological involvement is 1000 μg intramuscularly (i.m.) three times a week for two weeks, then every three months.

The BNF advises that for Pernicious anaemia and other macrocytic anaemias patients presenting with neurological symptoms should receive 1000 μg i.m. on alternative days until there is no further improvement, then 1 mg every 2 months.

However, the GWG recommends a pragmatic approach in patients with neurological symptoms by reviewing the need for continuation of alternative day therapy after three weeks of treatment

"

Also ask your doctor to check your Folate level as this is essential to process any B12 treatment you are given,

I am not a medically qualified person but there are others on here who can give excellent advice if you have any more questions.

I wish you well.

[speckles70 in reply to clivealive]

thanks for your response. My folate just below mid range.

[Foggyme Administrator]

Hi Speckles70. You Don't say what the reference range is but your B12 looks as if it will be at the very bottom of the reference range of not just below it.

If just at the bottom, then this would put your result in what's called the grey area - an though all the guidelines say treat the symptoms, not the blood results, many GP's do not seem to be aware of this. And you do have symptoms so,you should, according to all the guidelines, be treated.

If you have neurological symptoms, you should be treated immediately with intensive B12 therapy. (6 X loading doses, then an injection every other day until no further improvement, then an injection every eight weeks). Many GP's have not heard of this eerie e so aging, you'll have to point it out.

Details of this are contained in a book called the BNF - doctors prescribing bible - your GP will have a copy on the desk and can look it up. GP may say ah ha, but you don't have PA - well the answer to that is that there are more causes of B12 deficiency and there treatment for B12 and PA is the same - B12 injections. Oral supplements are not recommended for the treatment of B12 deficiency, especially where there is neurological involvement.

And yes, if there is neurological,involvement, your GP should refer you to a neurologist to rule out any other potential causes (many other things can cause neurological symptoms and it's always wise to rule these out).

Suggest you read the PAS pinned posts - to the right of this page - highlight anything relevant to your case, and take along to show your GP. Pay particular attention to the NEQAS guidelines (about treating symptoms, not blood results) and also the symptoms checklist (highlight all your symptoms) and the BSCH guidelines).

Ask for the evidence you present to be included In your medical records.

Good luck, let us know how you get on and please ask,if you need any more help 👍

[speckles70]

thanks I will let you know 😊