I self inject B12 2 or 3 times a week and know that you need folate levels to be 'adequate' to use it properly.
It's a few years since I had the intermittent pointless blood test that GPS ask for to check (inj supplemented) B12 levels and iron, vit D and folate by the by. All was supposedly 'normal' except vit D.
I now no longer get gp 8weekly inj and fessed up recently to the (horrified!) pharmacist meds review that I wasn't willing to get significantly iller with neurological symptoms to prove oral supplementation doesn't work and lots of arguments to get injection reinstated. She reluctantly agreed she could see why I chose this. So, I won't be getting blood tests done any time soon for folate etc.
I now use a vit D spray which really helps my winter energy levels.
I notice a lot of people on here taking folate supplements and asking about doses and levels, with or without blood levels info.
I eat (and grow) lots of folate rich green veg, and try to eat them 3 or more meals a week.
Does anyone know what an adequate dietary portion and frequency needs to be not to need to take (extra expense) supplements?
I've searched this site and can't find any information.
I'm sure someone here is bound to know?... Tnx
(Tag folate)
Written by
RoMello
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I was very concerned to read your comment "I now no longer get gp 8weekly inj ".
Do you mind me asking what reason your GP surgery gave for stopping your B12 injections?
I'm glad that you have the option to treat yourself.
It may be worth having one more go to get injections reinstated by GP surgery.
I am not medically trained just someone who suffered for years from undiagnosed B12 deficiency.
Have a look at the links below.
If you have a confirmed diagnosis of PA or suspect you have PA, might be worth joining and talking to PAS who can offer support and pass on useful info.
Each CCG (Clinical Commissioning Board/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency. Might be worth tracking down the local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links.
Some local guidelines have been posted on forum so try a search of forum posts using terms "local guidelines" or try an internet search using "name of CCG/Health Board B12 deficiency guidelines" or submit a FOI (Freedom of Information) request to CCG/Health board asking for access to or a copy of local B12 deficiency guidelines.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Thank you for your concern! I have been a PAS member for a few years now, and greatly appreciated being able to call for advice in the past, before I decided to SI.
I feel bad that by not fighting for reinstatement of injections, it lends weight to the lie the nurses believe that lots of people who don't really need injections will stop wasting appointments. I was quite angry when I heard this trotted out, along with 'the liver stores it for 6 months, and most people have a placebo effect...'
I remonstrated that I didn't think not falling over on getting up, two days after an injection was placebo but neurological improvement. She said I was in a tiny minority of patients in her experience and that she still thought there was a likely placebo effect for me!
And that if I took oral supplements I could have another blood test after 6 months and it would show if I wasn't absorbing it by mouth. I said hell would freeze over first before I would do that to myself to make myself iller, after years of finding every which way to improve and it was no surprise that people resorted to self injection and were basically driven underground. I left in stoney silence.
I was already doing SI and only kept up the 8-weekly injections at the surgery to ensure I was 'on the record'. So I sadly decided I didn't need the stress of a fight. The pandemic, isolation etc, was already testing me enough!
I am pleased it is now on my record that I self inject, after my annual drugs review with the pharmacist. She actually had more idea of what I was talking about than any GP or nurse I have ever spoken to as to why I resorted to SI. She agreed that falling over, sore skin and muscle twitches were indeed neurological, and that a GP may send me for tests if I reported this. I pointed out that was pointless because my blood levels would be high, and we would waste everyone's time so I would just continue as I am. She said it would be noted as mitigated harm though not their preferred course of action. I was pleased she did check where I obtained my B12 and syringes and that I used a sharps bin.
So. It does seem that it will lend weight to the myths believed by misinformed GPS and nurses.
But, I am satisfied I am managing my condition as well as possible, despite everything.
Thank goodness for the information and understanding from this wonderful community. You are all splendid caring human beings!
"it lends weight to the lie the nurses believe that lots of people who don't really need injections will stop wasting appointments. I was quite angry when I heard this trotted out, along with 'the liver stores it for 6 months, and most people have a placebo effect...'"
Did they say all those things to you?
I would find it difficult to restrain myself verbally.
See links below in case you ever get any more of that rubbish trotted out.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Advise on B12 and Folate supplements
How much folate for how long?
Do B12 supplements distort testing?
