A few weeks ago, I began a "therapeutic trial" of IM Vitamin B12 injections, despite having normal serum levels of B12 and folate. My main aim was to see if it would improve my extreme fatigue and daily migraines.
To gain my GP's agreement, I handed them a 4 page letter of justification, gained my rheumy's assent and got advice from the local haematology consultant (!) I then had 1mg doses injected every other day for 4 weeks.
Results: no change at all for the first week. In the second week, I had one good day and in the fourth week, one excellent day. In addition, there did seem to be a pattern of my migraines being less severe the day following an injection. But otherwise, the results have been rather inconclusive. There have been no adverse consequences.
So next week, I will be seeing my GP to review how it's gone and to decide what's next. x
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whisperit
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I agree with Kevin Whisperit. Certainly worth continuing with this. Once treatment has started, recovery from B12 deficiency can be very slow and take many months (up to two years for maximum where neurological symptoms are concerned). And it’s always slow at the start, with one step forwards and two steps back (improvements happen incidentally and sporadically, building up over time). With set-backs along the way, so don't be discouraged when things seem to happening slowly...or even going backwards sometimes. 🥴
So...the effects you mention and the pattern of less severe migraine on injection days may indeed be significant, so worth stressing with your GP.
Hope your GP is aware that the treatment for those with neurological symptoms is every other day injections until no further improvement....and not just for a few weeks (this intensive treatment regime is listed in the BNF prescribing guidelines - your GP will have a copy - third paragraph down - few read that far so may be worth pointing it out).
No need to check your serum B12 levels - all guidelines (BCSH, BMJ, NICE etc.) say that this is not necessary once treatment has commenced. Serum B12 levels will (should) be high (because you’re injecting large doses)....and this is as it should be (mine are always unmeasurable - over 2000). There is no correlation between serum B12 levels and the efficacy of treatment, so B12 levels cannot (and should not) be used to manage and direct treatment. Once injections have started, efficacy is monitored via symptom tracking (still symptomatic - continued and/or more frequent injections).
High serum B12 levels following B12 injections is expected and not dangerous.
In contrast, raised B12 levels that exist where no injections or supplements have been given / taken should always be investigated. The raised levels are not in themselves dangerous, but do indicate that there may be other underlying health issues (i.e. liver or kidney problems).
Worth noting that it's possible to be B12 deficient even if B12 levels are apparently within 'normal' limits. The serum B12 blood test is a poor marker of B12 deficiency, and the active B12 test is not much better (both 'tell' you how much B12 is in the blood but neither are able to determine if the B12 is getting to the cells, where it's needed). So it's entirely possible to have B12 deficiency (including neurolgical symptoms) with apparently 'normal' serum B12 levels and no macrocytic (large red blood cell) anaemia (many GP's expect this to be present but most often, it's not).
This is even more complex for those with autoimmune conditions since it has been shown, in recent research, that autoimmunity may cause the body to manufacture additional TC11 (this holds and transports B12 in the blood). B12 attaches to the additional TC11 which raises serum and active B12 levels and thus this can return a 'false normal' B12 status when blood is tested (additional B12 sloshing around in the blood - but not reaching the cells, where it's needed).
And after saying that lot...sincerely hope that your GP is wise enough to continue with this. It took me over a year of every other day injections to get the symptoms of B12 deficiency under control, and even now, I have to inject B12 every week in order to keep those symptoms at bay.
So...it's too soon to know for sure if the B12 will continue to bring improvements. But it's encouraging that there have been some. One thing's for sure whisperit...given the potential two year time frame for maximin repair and recovery, it's far too soon to stop treatment.
Crickey...Should have posted a B12 bore warning before splurging 😳😐🤣🤣🤣
Fingers crossed for the GP visit🤞. Will watch out for your updates 👀👀😉😀😀
Really pleased you've posted a long reply, Foggyme . Even if only a couple of people read it first time round, it will be such a useful resource for months or even years to come. I know I've benefited from posts other people have made ages before I joined.
And especially because your knowledge on this topic far exceeds that of most GPs - and even consultants like rheumys, neurologists etc etc. Putting it out here really helps us lot take control of our treatment x
I am happy to have read this! I take supplements and my serum levels of B12 are always high. My GP told me I don't need to take so much . . but I keep taking it anyway. If I don't . . my symptoms return. I have read that it's not something that will harm you even if your blood levels are high. I just go by my symptoms . . and I know what happens when I stop taking it . . .so I just take it everyday and don't worry about serum levels.
Isn't the blood test for the " intrinsic factor" the the main test they are supposed to use for the malabsorption of B12.
Only asked as I also have a problem with B12 and Folate. In fact despite eating plenty of folate rich foods and a meat eater I constantly have rock bottom folate and low B12 on " normal tests. Even one of my GPs mentioned malabsorption for this problem and vit D deficiency but that's as far as they went.
Worth our wise Whisperit having all the tests a GP can do for nutrients?...malabsorption and the complicated chemical processes and chain reactions in taking up vitamins and minerals etc
Have you Vitamin D prescribed? I'm on it indefinitely now following a loading dose for six weeks after being 'insufficient' at 48. xxx
Ask your GP to test the whole shebang when you go - Vit D, potassium, calcium, sodium, ferritin, glucose, lipids, LFT, FBC, ESR, CPR etc - since you're without regular monitoring on the autoimmunity front xxx
Yes I had my vit D level tested and it was 28. Had a 3 month loading dose of 28,000 a week now on 800 a day.
Sorry for the delay in getting back to you as I had to see the GP on a bit of a emergency. Persistent palpitations, chest ache and dizzy.
Had a ECG done and now have to have a 24 hour monitor as result was borderline with possible atrail enlargement. Also got to have more blood test as she wants to check victim and cholesterol levels.
At the moment she's not sure what's going on but thinks among other things it could be linked to the gallbladder problem.
Oh well whatever it is only time will tell so will have to wait for the results of this next batch of tests to come in.
Boudica1 Hidden SRiley - apologies for not responding to any of you yet. Just been through a round of prepping and appointments so a bit wiped-out. When I pick up, I'll return and leave a proper response and some extra information for you all 🥴😉😀 xx
Take care of yourself first and foremost your health is the most important thing. Hope you are better soon and up and running as best as you can. I know what it's like and am having a bit of a problem myself so please don't worry about responding to posts.
Just curious about what you said about high B12...my b12 blood test came back high and no one mentioned it (I saw it on a letter about me!). Can it be common/normal to have raised B12 levels? I wasn’t taking a supplement.
Lou...just to let you know...just left a reply for whisperit that touches on serum B12 testing and high B12 levels once treatment has commenced...might be worth a peek... 👀👀😉😀😀x
Whisperit! I've been waiting to see your update. Great post and great responses. And Foggyme, please, you just go to it explaining everything as much as you want to! So interesting! And I don't even have this problem....
Whisperit, to get a good day. And then a great(!) one.........well, I just felt a little tingle of hope for you. Early days, I know, but still.
I have heard only that niacin (b3) helps w migraines and fatigue in lupus. So I just googled b12 for migraine and i do see some folks claiming it helps. Had no idea... Btw i have also heard from my doctor that taking a single b vit is not recommended because it messes up balance in other ones. B complex is much more recommended instead.
From all I know, for you to have a few good days as you have described, makes Kevin’s suggestion seem like pretty good advice.
Today I got my serum B12 result back from GP - around 760 I think she said. I should have asked her to print this off for me but she has just explained that her young daughter has pernicious anaemia and other autoimmunity so I just couldn’t face being pushy person - especially as she was all in favour of me seeing a rheum privately and says she really does get the complexity and trials of living with uncertainty as a parent.
So I didn’t push her when she said that I probably didn’t have B12 deficiency. I was less sure that Vit D of 64 was good enough. I’m going to take both supplements again now. Where GP is concerned I have to pick my battles wisely and on balance I’ve decided that, once I’ve heard what private rheum has to say - I’m going to try LDN.
So will need this to be my next controversial conversation I think. This may change though if you start reporting many good days in future posts! 🤞🏽🤞🏽🤞🏽X
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