Hello all,
My vials arrived from Germany and I've just given myself my first B12 injection today! I'm wondering how often to do this to begin with, please - should I do it daily for a while or every other day until I start to notice an improvement? Any advice gratefully received! Thanks very much 😊👍
hello, I hesitate to advise you myself on what will work for you. As we all seem to have to find our own frequency / dosage levels. But it can be a long game as well...Can i suggest that you check the NICE Guidance for the minimal/baseline level. That's a good starter...
Also, search Posts in here..? Use the search function, try with things like " SI frequency" or " B12 injections " etc. Personally, i used x3 higher than the UK Nice Guidelines for my loading..as i have confirmed nerve damage.. I am happy to say ( after a month or so..) I have had some alleviation of my symptoms and feel much better...After my own loading period, I do my SI every 2/3 days using Hydrox and Cyan.
There are much wiser owls in our PA Forum family here, who can help advise more on this..
Thank you very much for your helpful reply. I'm really glad to hear you're getting relief from injecting more frequently - it would be good if GPs were better informed and would provide patients with the meds needed to maintain some sort of quality of life. I will check the NICE guidelines, but suspect they won't be on the same wavelength as most of the people on the PA Forum! I've been receiving 3-monthly injections for over 20 years (PA, Intrinsic Factor antibodies) - results have never been brilliant, but in the last twelve months they've had very little effect and I feel lousy. Contracting Hepatitis A at the start of the year seems to have left me very low and the neuropathic symptoms (plus confusion and fatigue) are becoming debilitating. I'm hoping that starting with self-injecting a fairly hefty loading dose it might give me a boost and things will pick up a bit! 🤞
Hello again. If you read my past emails you will see that my loading dosage was MUCH higher than the "nominal/baseline/safe" NICE Levels. I used SI and Sublingual intake on the same days i took in B12.
I think our body (old and young) can responded and repair given enough B12 ++ to sustain our bodies "daily operations" - BUT they need much more "bio-availability" to commence and support R&R = Repairs & Recovery etc. Especially from damage from B12 Def that has happened over years and years - its a bodily deficit / gap that has to be filled in my mind.
So, I personally feel you need a lot more B12 ++ ...for a lot longer than the NICE guidelines indicate. Especially if you have any dietary / ingestion issues, and/or drink regularly. As I think alcohol wipes out a lot of your available B12. The good thing is that B12 is very very very safe in higher dosage. I read some useful Japanese studies that indicated that as its water soluable...its use is body wide, quick burn, and is being constantly draw up. So, very high dosage for the longer term is NOT an issue. It might be over 3/4 decades tho..too much of anything for too long is..?
I now think of B12 and its co-factor buddies like an energy / repair fuel - So, lots and lots of bio-availability (with Folate & Co-Factors and a good diet) ...for a long time gives the body what it needs to operate AND repair over time. It resolves the long term bodily B12 usage deficit...These repair periods can be years and years... and might only ensure no more deterioration in some symptoms - but thats a big win if things stablise. JYFI - I am not a health professional, and this is all just my own thoughts guided by the lovely human beings in here, and beyond. Hoping all goes well with you. 
Thanks so much - I think I’ll bombard myself for a while until I notice some improvement! I suspect NICE guidelines have something to do with cost, ie they don’t want patients demanding more on the NHS. Is sub-lingual effective in people with absorption issues, please? No problems with alcohol intake as I’ve abstained since January after the Hepatitis A as a precaution! 😊
The attacks on B12 treatment began in 2010 when the tory government appointed new kinds of area regulation - it changed from coordinating to cost cutting. Then of course some GPs and nurses hate patients injecting themselves even when well trained. Pharmacists have now jumping on the band waggon,
I started weekly with cyanocobalamin and then went to every other day after reading and learning more here. I generally SI twice a week Weds and Sat.
I had a holiday abroad recently and didn’t take any for 12 days by day 6 I was very numb/pins and needles and awful anxiety symptoms, really noticeable difference. Despite oral supplements daily. Injected on my return and all well almost immediately.
But…. I bought hydroxocobalamin recently and tried it and it was amazing, no return of my numb arm/finger tingles for about 5 days!
When starting out I was given advice about loading doses. Understanding symptoms may flare before getting better. I’m not experienced enough to tell you what to do but hope sharing my experiences helps 🤷🏽♀️🌱
Thank you very much for your reply 😀That's incredible that after only 6 days without injections things started to get so much worse for you 😮- just shows how often you need topping up to manage symptoms. It's helpful to know that things might flare for a while after injecting, so I won't panic now if it happens to me! It's really encouraging to hear that your symptoms improved almost immediately after recommencing injections. I'm feeling cautiously optimistic that I'm on the right track with self-injecting but suspect I'll have to be patient as things aren't great at the moment. Thanks so much for sharing your experience and hope you continue to feel the benefits of your regime! 👍
Not knowing your symptoms blood levels ect noone can really advise .Were you not offered any treatment by your G.p ?
In the UK if serum b12 is below reference range.
Or symptoms predict
Or nothing else found
Or a positive Intrinsic factor antibody test had .
Thd NHS should off loading doses as per NICE guidelines and the first ever b12 injection in a clinical setting.
So every other day for 2 weeks. 6 injections.
They should continue if neurological symptoms present until no further improvement.
Then 2 monthly - 3 monthly
This regime is seldom enough so most top up buying their own.
I was told for thd average person ( whatever they are?
It usually stays in the system for a week then declines .
Everyone seems to operate at a certain level.
If your b12 deficiency is an absorbtion problem or Pernicious Anaemia you will need to maintain injections for life
Thank you very much for your reply 😀👍I've been receiving B12 injections for PA for over 20 years (IF antibodies, scarily low B12 levels) but only 3-monthly. As things seem to have got a lot worse over the last year or so, I wanted to try self-injecting a loading dose and then topping up what I receive from the GP to try to improve symptoms. Just wondered how often to do this as a starting point, but it sounds as if everyone is different! Hopefully with a bit of trial and error I'll find the frequency/amount that gives me optimum results 🤞
I feel you have been on what i would term a very low "body operations" maintenance dose. Like one anadin for a broken leg... ?
Enough to keep you bothering the GP... too much. 
Hey? How do I spell............ cynic..?
😂😂Realist I prefer! Thanks so much for your support - good to know there are many of us in the same boat! 😊🙏
healthunlocked.com/user/New144
I too had many 15+ years of 'asprin for a broken leg' and petitioned my GP for more frequent injections. After years of fighting I never got more than 2 monthly by the end of things, and I realise I never got the loading doses once diagnosed. I always likened it to getting a peeled grape when starving. It was the accumulation of more severe neurological symptoms with anxiety and depression that prompted me to go through SI route. The GP blamed most things on menopause and just offered drugs for fibromyalgia rather than accepting it was a sign of not enough b12. Also got blood tests with no understanding that pointless after supplementation.
I only ever could function for about a week or so just after the injection, and spent 6/7 weeks feeling awful exhausted a mess and scared.
When I began SI I started with weekly, and was less tired, but had the well described reversal symptoms. I gradually stopped getting fibromyalgia and pins and needles in my extremities over a year or two. My mood improved significantly as did my concentration and memory.
In the short term, after a few months I noticed much more subtle symptoms like jumping eyes, sudden deterioration of balance and 'the gasps' and the feeling of jangling nerves in my back as if something was going to twang in my spine/neck. These appeared on day 4 or 5. So I have settled on twice a week, or whenever I get the early warning signs. It's handy as my memory is still not great at remembering to do the injections.
I'm not fixed, but can manage myself better and have more of a life than I believed possible. Also went SI just before the COVID clampdown when GPs stopped offering injections in favour of tablets/spray.
I knew these didn't work for me as I had tried supplementing between 2-monthly injections.
I can only hope your SI journey gives you the improvement you desperately need. I wish I had done it years earlier! It feels I wasted years of my life...
Good luck 🍀
Thank you so much for sharing your experience and really sorry to hear it has taken you so long to get some sort of improvement. It is shocking to hear how many GPs seem to live in total ignorance of the severity of symptoms and the need for more regular injections. Ridiculous to test someone's levels, too, when they're receiving injections / taking supplements - how can they expect to gain accurate results from this?! No common sense.
I've jumped in at the deep end and have started self-injecting daily (today was day 6). No noticeable improvement as yet, but I will persevere until things start to pick up (hopefully!). I suppose I can't expect overnight results, but listening to what other people are saying it can take a little time.
Long may your improved quality of life continue! 😊👍
Yes.Perhaos try a loading dose as per NHS 6 over 2 weeks then decide or try 2 monthly to start with.
My daughter didn't cope on 3 monthly but is okay 10 weekly .
I am not .
Dokeep a log as it can take time to establish what's best for you.
My mum has 8 weekly now after ? 30+ years of 3 monthly.
Much better
I would try every day or every other day until all your symptoms go away. Then try spreading them out to find your maintenance dose. I get symptoms back at 3 weeks so I injection once per week.
Thank you very much for the advice - I think I’ll try daily until things seem to be picking up and then see how often I need it to maintain any improvement (which I’m really hoping for!) It’s so helpful to hear other people’s experiences - I’m really grateful for the input! 😀👍
