Is this B12 deficiency?

[IndigoJasmine]

Last year I had several fainting episodes, as well as severe fatigue, brain fog, migraines, joint & muscle pain, severe mental health dip (pre-existing MH issues). I did have classic covid symptoms in late Feb (that was remotely diagnosed as bronchitis, managed at home and never had any testing as it wasn’t available then) but seemed to recover from that uneventfully. I had wrist and nose injuries from fainting too. I had old wrist injuries as well, and now have chronic wrist pain and intermittent tingling/nerve issues in hands as well but these have been diagnosed as due to the wrist trauma and told to use otc painkillers as needed and wrist braces.

Anyway. 24hr ECG normal. Bloods showed low iron and Vit D, GP advised supplement them so I did. I asked for the results print out and B12 was only just above the bottom of “normal”. I can’t remember the exact number and at the moment the print out is packed in boxes because we moved house. But I think it was in the very low 200s somewhere. Now I know that we supplement dogs & cats below 450, and in other countries cutoffs for ‘low’ are much higher than us (500 in some countries?), and that over-supplementing B12 is not a concern. So. I ordered some B12 vials from Germany and self-injected (am fine with this used to injecting animals).

I felt much better after first 3 injections a week apart. Then, I forgot to do them as life got very busy. A month or so later I realise that I feel really, really shit again and I inject again - within a few days it is like fog lifting and I am alive again. Then I forget again and another month later I am struggling hour to hour and have a mega migraine. So I resolve to do at least 10 injections weekly.

I have just done the 4th weekly injection and am doing so, so much better. I notice that by day 5-6 I am starting to notice that the injection feels ‘due’, I am exhausted and mentally slow again, joint/muscle pains worse, hand nerve issue worse, I feel like I have the flu. Having to use painkillers to function.

Can this really all be B12 deficiency? The GP was not interested at all as it was “normal” and advised against me supplementing at all, so I don’t have any support there. I have kept up iron and Vit D supplements regularly throughout pretty much, and they wouldn’t explain why symptoms come back when a B12 injection is ‘due’.

I’m semi resigned to having to continue to inject if need be - how do others manage this if you don’t have your GP’s support in the U.K.? What schedule do you follow?

Dear Indigo Jasmine,
maybe seek a second opinion, or find natural help from a homeopath or naturopath?
much can depend on your age, what you eat, lifestyle, but docs won't factor these always...there is so much alternative help on the net too.
very best wishes for your heath,
Candrika
Hare Krishna

Following this with much interest. I am having all your symptoms and so far have even prescribed iron and folic acid. How much were the b12 injections?

Yes it could absolutely be b12 deficiency.

It's a shame but b12 deficiency is kind of ignored, under diagnosed and under treated in this country. I had to really fight to get the injections on the NHS. Most GPs know very little about it in my experience. They consider 200 to be fine, in most other countries that would be considered very low.

If its any help i supplemented my low b12 (276) with solgar soluble and a spray (in case of stomach not able to absorb tablets) it worked and got me up to 500+ Don't know why it was low but i was anaemic too, my symptoms haven't returned

10 doses was under €20 including postage from Germany, they’re really inexpensive. I’m lucky I have needle/syringe supplies readily and no issue self-injecting.

It just seems bonkers that such a cheap treatment could make such a dramatic difference to my quality of life and productivity yet be basically ignored as protocol by the NHS.

Mine is about 400 (it’s been lower) and I have brain fog and fatigue. I get a monthly injection, my Gp wants to see it at 700 lowest level. Previously I was getting a weekly dose to bring it up which it did and then I figured it should be a maintenance dose but my old gp cut me off.

If you can’t absorb b12 it will be something to do with intrinsic factor which they can test for (my gp forgot in my last bloods). Wish I could inject myself so I could get on with it as I’ll need them for life.

The nhs apparently don’t do the monthly injection, only the 8/10/12 week injection. And only if the tablets don’t work. So you’d need to be prescribed them first for three months to see if your symptoms improve. Meanwhile you feel like utter shit.

The trouble with basing decisions about whether to treat someone or not due to them being outwith the parameters is that your body may need more b12 than the minimum. It may need the maximum. But if you’re within the parameters even if low they may not bother.

It’s survival of the fittest. If you fight for your rights you may get somewhere. If you’re not the kind of person to challenge the GP then you’ll feel shit. It shouldn’t be like that.

PS apparently there can be some real issues associated with too much b12. You don’t want to overdo it.

Absolutely could be b12 deficiency.

I would say that I’ve been in double figures and there’s lots way a single shot after the 8 weeks say I can have it is enough. I see inject and take the necessary co-factors to function properly. There’s no real point in self injecting b12 without them.

I do actually understand the biochemistry and pathophysiology of B12 in detail from a pure science perspective, it’s just very different linking that academic knowledge with experiencing wide-ranging seemingly non-specific symptoms and realisation that the U.K. medical establishment is so spectacularly disinterested in poor quality of life and poor functioning due to this issue. Even supporting people to manage themselves would be a good start rather than denying it is a problem!

I’m thinking of monitoring symptom response to treatment and then stopping when I feel better, and getting a private retest a month or so later and seeing how it goes. Need to recheck iron and vitD at some point anyway and GP said they wouldn’t do that unless I was still not well. Yes, ideally I would have checked IF, homocysteine and MMA before supplementing to get the full picture....in my defence my brain was struggling to cope day to day and those tests are not cheap privately, unlike the injections!

@Elieza you’re right there is increasing recognition that there is an association with high B12 and some disease states but that’s not the same as ‘over’-supplementing causing disease, more that those diseases can result in a high B12 so it can be used as a biomarker. Is my understanding so far as someone scientifically literate but non-specialist. In any case I’m not too worried about supplementing for some time when I am documented as low, seemingly symptomatic and plan to monitor levels as well.

Just wish the injections weren’t quite so stingy!

The only issue with self-monitoring and self-treating of course is that when you’re not well it becomes much more difficult if not impossible to do, and that’s when it’s most important.