B12 loading injections but now neuro symptoms returning after 5 weeks.

[Holly2201]

Hi all. First post here. I visited my doctor due to numbness in both legs on standing/walking. This got progressively worse over time. It started as a one off and I put it down to the way I had been sitting before standing or walking. It got progressively worse, where it was happening at least six times a day every day. My doctor found low B12 and folate levels. B12 was 150+ I believe. I was given 5 loading injections over 2 weeks and immediately, my symptoms disappeared. However, not totally, I still felt a little wobbly at the knees on occasion. It has been 5 weeks since my last injection but now the numbness is returning and again it is getting progressively worse. My doctor has now arranged for more blood tests for B12 and folate. I will be having these tests later today. She did mention a neurologist referral depending on the blood results. I would like to know whether you people think the return of my symptoms could be due to not getting enough of the injections or whether these could be related to another condition? I fear MS. Thanks for any replies.

[Gambit62 Administrator]

Think it is more than likely to be due to B12 deficiency creeping back. When hydroxocobalamin was first introduced in the UK it was administered monthly - and the reason for moving to longer periods for maintenance doesn't really seem to have any scientific basis.

Getting folate retested is a good idea.

Serum B12 may come back low but even if it doesn't that doesn't mean it isn't a problem - and you don't need B12 more frequently.

Do come back when you have the test results.

[Holly2201 in reply to Gambit62]

Thank you so much. Will update with any news. Great forum by the way. Have read many of the posts and replies and this has helped me a lot.

[Foggyme Administrator]

Hi Holly2011

Grief, your B12 was very low!

You have - and always have had - neurological symptoms.

Just wondering why your GP hasn't put you on the B12 regime for those with Neuro symptoms, as per all the guidelines (BNF etc)?

As follows:

By intramuscular injection, pernicious anaemia and other macrocytic anaemias without neurological involvement, initially 1 mg 3 times a week for 2 weeks then 1 mg every 3 months

Pernicious anaemia and other macrocytic anaemias with neurological involvement, initially 1 mg on alternate days until no further improvement, then 1 mg every 2 months

Note: B12 deficiency can present with neurological symptoms and without having PA or macrocytic anaemia - your GP may not know this.

The fact that your symptoms are returning before your next injection is an indicator that you need them more frequently.

Good idea to ask your GP to prescribe the neurological regime.

Sorry - can't give you any links (using phone) but if you read all the links in the PAS pinned posts to the right of this page when you log on, the information there will help you with your GP (you may have to take some of it in to show them - most have never heard of the neurological regime.

Please post again if you need more help with your GP 👍

[greenbexy in reply to Foggyme]

Sorry for butting in, but would B12 be low again after 5 weeks? Holly2011's situation sounds similar to mine. I want my Thyroid tested soon but was bothered that doctor might do full blood test again and my B12 levels will be fine, then deny any more injections. Had my loading doses five weeks ago too! Sorry Holly! I feel like a big kid who always has their hand up in class, question after question!

[Foggyme Administrator in reply to greenbexy]

Hi Greenbexy. Your B12 levels will be high following your loading doses - that's what the loading doses are designed to do, get your B12 levels up. The high levels are simply due to the injections and do not indicate that you are no longer suffer from B12 deficency.

Your GP should not use this as a reason to stop your injections...treatment should be based on symtpoms, not B12 levels.

And if you'v been diagnosed with PA, injections should continue for life.

Here's some information that might help:

stichtingb12tekort.nl/weten... (Problems with Serum B12 Test)

stichtingb12tekort.nl/weten... (Testing B12 During Treatment)

stichtingb12tekort.nl/weten... (Misconceptions About B12 Deficiency – Good to know before seeing GP)

👍

[Holly2201]

Hi. Thanks for replies. I will discuss with my GP the neurological regime as advised by foggyme. I am not sure she knows about that. She seems to be very understanding so far. She has provided me with literature on PA. and has said that I will have the injections for life. The question is how often and whether she will prescribe more now regardless of the result of the latest blood test and in accordance with the guidelines for those with neurological symptoms. She has also mentioned referral to a neurologist. I am assuming she will do this if the blood tests come back normal and as I am still experiencing the neuro symptoms. I have learned a lot from this forum but am no way experienced as some of you are in the matter. I will continue to learn I suppose. Will update after seeing my GP about the blood test. Thanks again.

[Foggyme Administrator in reply to Holly2201]

Hi Holly2201. Please see my reply to Greenbexy, above. Same applies to you...and there are some links that will give you information about serum B12 testing once treatment has commenced (not advised unless checking to see that levels are not too low).

B12 injections should not be stopped because serum B12 levels are high...come and post again if this happens and we can give more advice 😄