B12 injections - how long before you felt better?

[WellErrr]

As title really 🙂

I am exhausted. Start injections tomorrow and really hoping I can start feeling more like myself!

Thank you!

Didn't work for me. I was devastated as had such high hopes!

Oh no! 🙈 sorry to hear that!

did You have enough injections? Was your folic levels ok

Honestly, it probably took a good 5 years to be approaching ok and that's only because I took matters into my own hands and started doing my own injections every other day. I'm 10 years into diagnosis now and finally feeling great and able to exercise/work and basically not be limited by it in any way. I've been able to cut my injections down to every other week.

Took me about a month or two to feel ok ish

I had two in a row then another follow up and had zero response.

I have noticed a difference with using a Vit D spray however.

It’s not a quick fix, and you need cofactors to support. If you don’t have a folate level in the upper quartile of the lab range, the B12 would basically just be pissed out.

Want frequency of injections did you have? I had every other day, with cofactors, and there was a noticeable difference in 3 weeks. My doctor couldn’t believe the difference in fact and immediately agreed to prescribe it for me to self inject every other day (I had bought my own previously). I did that for over 2 years and was still seeing improvements before my doctor left and the surgery did a B12 review and dropped me to monthly. Wankers

Dd had a couple and while the first seemed to help, the second triggered a classic case of B12 acne which she’s struggling to get on top of after 3 months so not sure I’d actually recommend.

I forget the specifics but I was under the care of a private nurse at the time so I'm sure everything that could be done was being done iykwim. It was expensive so I couldn't continue indefinitely without seeing any results.

If you buy your own it’s less than £1 per injection. If you weren’t taking 5mg folic acid daily as a bare minimum, the shots would do nothing. You should also use a B complex with less than 10mg B6 in it - use that daily for 4 months then a 2 month break….. let me see if I can find my saved info from when I used tl help the B12 Society. If I still have it, I’ll copy and past it as a new post - there’s a lot of info, but if basically saved my life.

First of 2 posts - basic B12 info:

B12:

Welcome to the club so to speak.

Firstly, don’t let the fact it’s just a vitamin deficiency fool you into thinking it’s a simple fix as sadly it’s not! But it can be fixed and you can get your life back once more.

So a B12 deficiency can be due to either diet or your body cannot absorb it from food. Are you a vegan? If you are, and haven’t been supplementing, it’s highly likely you can absorb it and therefore even an oral supplement will help you. Be aware though that vegans can also have absorption issues.

If you eat meat or animal derived products, it is likely that you have an absorption problem. If your dr offers you oral supplements you need to REFUSE them and ask to be treated in accordance with the guidelines. This is crucial.

You SHOULD be offered loading doses - this is 6 injections over a 2 week period. They are then likely to say one every 2-3 months. HOWEVER, the guidelines specifically say that if you have neurological symptoms you should be given an injection every other day until no further improvement. After this, the guidelines are one every 2 months if you had neurological symptoms or 2-3 months if not (push for 2 months). I am told this is on page 994 of the drs BNF book - all doctors have a copy of this, or it can be found online at the link below:

https://bnf.nice.org.uk/drug/hydroxocobalamin.html

Sadly it isn’t quite that simple though - you also need cofactors. Did your dr check your folate level? If you haven’t already, ask your drs for a printout of your results (or look at them online if you have access). Folate usually has a range of around 3-20 (this can be different depending on local lab as well as what unit of measurement is used). You need it to be in the upper quartile of the lab range (so in the above example at least 15). Check your number yourself as if it’s low but in range you may be told it’s fine. B12 injections will use up any folate you have - you need 5mg daily alongside your loading doses and if you carry on with alternative days.

You also need to check your iron levels (both the red blood cells and stores). And your vitamin D - this wants to be at least 200 nMol/l.

You should also take a B complex supplement, make sure you eat potassium rich food daily (do not take a supplement for this except under strict doctors supervision) and you may need a magnesium supplement (the amount will depend upon how much vitamin D you are taking). A magnesium supplement can be done in a bath with magnesium flakes or as a spray after a bath/shower, as it absorbs better through your skin.

Before you go to your GP, keep a symptoms diary. Make sure you have checked all of your blood test numbers yourself (post a picture on here obscuring all personal and doctors data and we can help you to read them as many ranges are not high enough) beforehand too. I would also advise making a note of the protocols for treatment and details of where it is in their copy of the BNF.

Go in there informed and be ready to fight for what you need. Hopefully you will have a dr that’s really good and will do all this anyway. Sadly I’ve read too many horror stories about drs mistreating people with this (including a friend of mine) to be confident you will be treated correctly without taking all of that in with you.

Remember - if they want you to take oral supplements don’t do it! If you take them they will retest your blood, tell you your B12 is now fine (because it will artificially inflate the number) and as you still have symptoms it must be something else. Some damage from a B12 deficiency can become permanent if not treated in time, so it’s crucial that doesn’t happen to you!

Sorry for the long post, I just wanted you to have one place to refer back to with the info!

Good luck xxx

Second of 2 - info about the injection and cofactors:

Self injecting starting info:

Before beginning self injecting, your first injection must be done in a clinical setting (such as the doctors or a B12 clinic). Make sure if getting it done at anywhere other than a doctors surgery, that they are trained and prepared for an anaphylactic reaction. This is very rare - but if it happens to you, you want to be sure they can treat it!

So the basics that you need to self inject are:

B12 (go for the type you already get injected at the drs)

Syringes - needs to hold 1ml. 2ml syringes are ideal as it gives you a bit of space and which is easier to draw the B12 up. If you are getting the 2ml vials of B12, you may wish to get slightly bigger syringes.

Needles - the pharmacist at the needle exchange gave me blue ones that are 23g x 1.25” (0.6 x 32mm). These are IM needles. Depending on your size, you may only need 1” or possibly need 1.5” needles.

Spot plasters - just some small plasters to cover the injection site if it bleeds

Alcohol wipe - not everyone uses these but you can use them to wipe the vial and one for the injection site

Sharps bin

You may also want:

Glass ampoule snapper (I personally use an empty Calpol syringe to snap mine, some people use a pen lid!)

Cotton wool balls for the injection site afterwards (clear up B12/blood if any comes out)

Now where to source. I have been lucky - I joined a B12 share the cost group and ordered 3 boxes of 10 ampoules from a lady that was placing a group order. Then last week my dr put it onto prescription for me. So you have a few options:

1. Ask your dr to prescribe it for you to do at home

2. Join the share the cost group and find someone placing an order that could get some for you as well

3. Order directly from a European pharmacy yourself. I believe there’s usually a minimum order quantity so it can be a bit pricey. To make sure you are using a trustworthy site, please use the group files to check where to source as there are trusted websites to use. Please don’t use eBay or Amazon as there’s no way to know what you are getting.

For needles etc I got everything I needed from the needle exchange. It’s basically designed for drug addicts but I spoke to my local one and asked if I could use it for B12 and they said yes. They gave me a sharps bin and as many packs as I wanted with the needles etc. Each individual packet had 1 needle, 1 syringe, 1 alcohol wipe, 1 spoon (don’t need this) and 1 ascorbic acid sachet (don’t need it either). You register by giving them your initials and date of birth.

A few days ago I found out that needles were really cheap after all (about £2.80 plus VAT for 100) so I ordered myself a few supplies. You need 2 needles per injection ideally - 1 to draw up then switch it to a fresh one to inject. I found it really hurt a few times and that’s because if you touch the glass with the needle it makes it blunt.

The website for all supplies is Medisave UK. I got 100 syringes, 100 needles, 500 cotton wool balls and 100 alcohol wipes for just over £16 including postage. They sell everything you might need though!

I think that covers you for getting started! You also need to make certain that you have all of your cofactors ready. Absolutely no point SI if you don’t take all of these:

Folic acid (or folate) - 5mg daily if you are injecting daily or alternative days. Also needed if you are already deficient. Your level needs to be in the upper quartile of the lab range on your results. Most of the UK labs are 3-20 so you want to aim for at least 16.

Iron - be careful with this. I don’t know what the protocol is, but think you need it daily if injecting daily. I’m already on it for low iron. Please check for the right dosage of this and if you need it!

B complex - a general one. Make sure B6 has no more than 10mg in it. Take this tablet every day for 4 months then take a 2 month break before resuming. If you find one without B6 in it you don’t need to take the break!

Vitamin D3 - 10,000iu Daily (ideally wants to be in olive oil not sunflower oil etc)

Vitamin K2 - needed alongside the D3 to help it and your calcium to go into your bones and teeth! I don’t know the right dose and last night I read you shouldn’t take it if you are on warfarin or have kidney issues. So another one to investigate! Sorry.

Magnesium - don’t go for citrate as I’ve read in multiple places this isn’t the best form! Have a google as there are loads of different types available and each is good for different symptoms. I went with magnesium malate to help with energy. You want the equivalent magnesium intake of between 400 and 1,000mg per day. With these don’t go with what’s on the front, look at the contents. That tells you how much magnesium there is in it!

Thank you, that is massively helpful.

My folate is 4.4 so although ‘normal’ is quite low. My GP didn’t mention it. I have managed to get the 6 jabs over 2 weeks loading regime, but I did have to argue for it.

HB is normal but ferritin is low, 10.9 I think so not dreadful but not great. I’ve started Spatone.

That ferritin is dreadful! I would be taking ferrous fumerate with vitamin c with that, it needs to be up past 70 at least

It is pretty bad actually isn’t it ☹️
B12 is 144. I can’t believe I had to argue with my GP about this being a cause of my chronic lack of energy, brain fog, muscle weakness etc.

Found out by accident that I was anaemic to a dangerous level. Had to go to GP surgery for several times a week to get my B12 levels right . Now have an injection every 3 months. It was confusing at first as my diet is very good, but with Pernicious Anaemia, the body doesn't absorb Iron and vitamins.Also, a few years ago, there was a review of iron levels and there had been a miscalculation in UK. This was reported in the lancet. Also some gut problems can interfere with vitamin absorption. In my case, IBS.I would suggest instead of self medicating, ask GP for a review or change GP.

All of your levels are very very low. You need 5mg folic acid daily - take it at least an hour before your injection whilst your level is so low. Anything below 7 means you can’t absorb the B12 injection, so the folic acid is crucial to help you feel better.

do you know you vitamin D number? I found my vitamin D and folate levels were both below the bottom of the lab range, my iron was similar to yours. It took getting all of these corrected to start feeling better.

You have neurological symptoms. The only way to correct these is with every other day injections until no further improvement in symptoms. This is printed in the BNF book that all doctors have a copy of, it’s the NICE guidelines. However most doctors don’t follow this. They might do 6 over 2 weeks then move you to 3 monthly (it should be 2 monthly after every other day ends in the case of neurological involvement anyway). Push for them to follow the guidelines. If they refuse, ask for it in writing that they are refusing to treat you as per the guidelines and tell them this is for your solicitor - you would have a solid case for medical negligence!

Thank you so much, you’ve been so helpful!

Do you have a link to the right bit of the NICE guidelines please? Don’t know if it’s my brain fog but I can’t find them. I’m going back to see a different GP today and I need to go armed with evidence.

@WellErrrthe link you were asking for is in the this post - I hope it helps. Expect a fight - most doctors know fuck all about vitamins, they have half a day learning about them all and a lot skip that lecture… I got lucky, I had a doctor that listened to me and described herself as a bit of a hippy so would try vitamins. I think I would be dead by now if she hadn’t helped me and listened to me!