UPDATE.....

[CRAZYFROGLADY]

Well, I've got a new GP and she has agreed that my symptoms should be dealt with even though my B12 levels are in range (only just). She has agreed to a weekly injection for 6 weeks, followed by a blood test..... I am aware that people usually have 6 injections over 2 weeks, not 6...... Would this make much of a difference? Thank you

[CRAZYFROGLADY]

Very happy to finally be given a chance!! just double checking the frequency...

[wedgewood]

It's usual to have loading doses first(6 over 2 weeks.) Having a blood test after the injections seems crazy to me. The reading will be very high and the the doc will say that all is well. End of injections.!!! "In range" I have found actually means really low. The docs don't under stand that if it is the usual blood serum test only a small percentage of the B12 shown is actually available to the body. You might feel a difference with the 6 weekly injections Depends how bad your symptoms are and how long you have had them for. Let's hope so. I assume that you are not vegan or strict vegetarian, and are not taking a proto pump inhibitor? Best wishes

[CRAZYFROGLADY in reply to wedgewood]

Hi, no I am not vegan or vegetarian, and I take blood pressure medication and antidepressants, but nothing else. I thought that myself with the blood test!! Think I will suggest to her to wait for a while before testing me!

[wedgewood in reply to CRAZYFROGLADY]

I have read somewhere that blood pressure medication can deplete B12. Also depression is a symptom of B12 deficiency. Do you know what your blood serum B12 is?. Your doctor only said the readings were "in range" So did mine and I eventually found that it was 150(I had totally numb feet as well as many other symptoms) So that's when I had to go and consult a private GP. I do hope that you get benefit from your injections. Let us know how you get on ! All the best.

[CRAZYFROGLADY in reply to wedgewood]

That's interesting, I didn't know my medication could be contributing! My previous reading was 192 (range 189-883) but am also experiencing symptoms of deficiency. Thank you

[LtAngua52]

It doesn't seem like your gp has read the guidelines! You could print out a copy for her. It says your loading doses, if you have neurological symptoms, must be done on alternate days until symptoms stop improving. Think ut is two weeks without neurological symptoms and then 3 monthly. Every 2 months if neurological involvement. Although most people need it more. I inject weekly. Once you start testing is redundant as it skews results. However, if your level is still low after supplementing then that indicates a problem.

Have you seen the guidelines from the British committee on standards in haematology? Your gp should have read them!

[CRAZYFROGLADY in reply to LtAngua52]

Hello, I have queried this with my doctor but she said as I am in the "normal range" - just - that once weekly is best!! She also confirmed this with another GP at the same surgery so felt like I couldn't query it too much!! How do you inject weekly - do you buy the injections yourself?

[LtAngua52 in reply to CRAZYFROGLADY]

Hi, I get methylcobalamin 5000mg from a charity and buy the micro fine fixed insulin needles myself from medisave. I inject myself weekly in the thigh muscle. I hope you feel better soon.

That should read 5mg!

[CRAZYFROGLADY in reply to LtAngua52]

That's a good idea, I take it you had no luck from any GPs? Thank you

[Withattitude in reply to LtAngua52]

Do you find the methyl cobalamin really stings?

[LtAngua52 in reply to Withattitude]

Sometimes, mainly in my left leg which I put down to the fact that I think I wobble a bit being right handed.

[CRAZYFROGLADY in reply to Withattitude]

I am being given hydroxocobalamin which stings a bit but not too bad !

[bowler]

Sounds like you have an understanding Dr. At least she is willing to treat you even though you are within range. I hope you soon feel the benefit.

[CRAZYFROGLADY in reply to bowler]

Thank you I have only had the one so far, but booked in each Monday for them so hoping to feel better soon!

[Gambit62 Administrator]

where are you based and what type of B12 are they using. Different countries use different forms of B12 - eg Cyano is used in the US and the loading protocol is quite different there from the one that is followed in the UK and recommended by the BCSH.

I'm not entirely sure what the actual regime is in the US but just that it tends to be loading doses over a longer period of time and then maintenance monthly.

[sweetsusie in reply to Gambit62]

I've just started having B12 injections...actually only one so far. My doctor has scheduled them for once a month...no loading, and after reading all the good information on here, I'm wondering why no loading? Guess I'll ask him when I go see him on the 13th.

[Gambit62 Administrator in reply to sweetsusie]

are you based in the UK?

Even in the UK some regions still have different protocols but that doesn't mean you can't ask about why you aren't being treated in line with BCSH guidelines (and NICE guidelines)

However, if you are outside the UK then the treatment regime will be quite different ... and it may be a different form of B12

[sweetsusie in reply to Gambit62]

I'm in the US and have been prescribed: Cyanocobalamin 1,000 mcg/ml shots. I'll ask the doctor when I see him on the 13th for my next shot. Thanks!

[Gambit62 Administrator in reply to sweetsusie]

Thanks - the protocol that you see quoted here is the one used in the UK where we used hydroxo - things are different in the US. However, that doesn't mean that the standard protocol there is necessarily any more suitable for you than the standard protocols here are for people.

I suggest that you look at your symptoms and to what extent they may or may not be improving - use any of the standards from the UK to argue your case if you need more but it would be persuasion that would really count - your doctor being willing to listen to you and tailor the treatment to you rather than just blindly following protocols

it may also be worth exploring information that is available on the aafp (american association of family practitioners) website

aafp.org/afp/2011/0615/p142...

Other sources of information would include would include the US nih websites including this one

nlm.nih.gov/medlineplus/enc...

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

Please note these are only suggested starting points to get into the wealth of on-line resources provided by nih.gov

[CRAZYFROGLADY in reply to Gambit62]

Hi, I am in SE England, and they are using Hydroxocobalamin. I have shown the GP the current guidelines and she said that in this case she would rather administer weekly... I am hoping to feel benefit soon!