Just yesterday I gave myself an injection of B12 - that was my first sslf injection of it.
I am aware of the NICE guidelines for the treatment of B12 anemia with neurological symptoms and I do indeed have strong symptoms which seem like they can only be neurological in nature like numbness across my body. I have a large number of symptoms that look like B12 deficiency but I don't have a diagnosis and like some of you (and as some of the literature suggests) I am trying B12 anyway as a 'therapeutic trial' to see if it helps.
So naturally I was going to follow the NICE guidelines for anemia with neurological symptoms and inject every 2 days until I see a change although in practice I'm sure I'd stop after 2 months or less if I didn't see any improvement.
However I was wondering if I should just inject every single day to speed up the process and then move to every other day after a week or two. I'm sure I've seen other people here say they've tried that.
Would that be fine? Is it just unnecessary? My symptoms are very heavy and they've taken a big toll on me and I'm just so eager to see some improvement.
Thanks.
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Fleecie
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I wS injected every other day for 6 injections. Then an unwanted 5 week break. Then back on every other day for ? 4 months then twice a week then weekly thee 2 weekly . Tried 3 weekly a few tines. Back to 2 weekly. Now weekly for the last 18m
Not really, no. It pushed away the brain fog and memory loss almost immediately.
One major difference was that my memory was so bad that I'd need someone to be with me in the car to tell me where to go, and I had to memorize simplistic instructions on how to get home.
This is a neighborhood I've lived in for over 10 years.
I was ordering some fast food at a drivethru and I stumbled over my words so much that the lady doing my order didn't know what I wanted. I wanted some nachos but I kept saying I wanted tacos.
But after an injection, my thoughts became clear again and less depressive. Less word searching, less mood swings. I didn't feel rage or apathy all the time.
And it made a major difference in the anxiety. The hardest part was actually making myself do the injections. I had zero pain tolerance and my hands would shake.
I'd been suffering for like a year with no injections and I was only taking oral b12 that didn't do very much for me.
I'll warn you about the pain though. It always hurts when the nerves start to regain feeling. It can burn too.
I'm only throwing ideas out there - I don't know for sure - but....
The Dutch have done a lot more recent research into B12 and their protocol is for weekly injections.
Technically a 1mg injection of B12 supplies your body with plenty of B12 molecules to service its needs for a while so daily injections - or anything more than weekly - shouldn't be necessary.
I wonder if the reason that some of us (I need 1.5mg every day) need to have very regular injections is because the UK protocol of 6 jabs in 2 weeks is too much all at once, and our bodies, that have been desperately starved, suddenly get such a abundance that they don't cope well and the mechanism that has been trying to be very frugal with the small amounts of B12 you have been absorbing, somehow gives up.
I'm not entirely barking or making things up - I have read that this is the reason for the more spaced protocols in some countries and it is a principle that is used to guard against hypocalcaemia in cows when they calve. I've milked cows for many years and it is very effective when you want it to work foryou so I expect it's just as likely to work against you in situations like B12 jabs.
When dealing with any other nutrition for animals (you can't help it with calving which happens all at once, hence why we control the cow's diet to try to effectively smooth out the demand for calcium in her body) we aim to make any changes in a gradual, phased way and millions of examples show that this produces by far the best results.
Intheory there is no reason why you shouldn't do every day jabs to start with... But also no reason why it would help you heal any faster because an excess (as every other day jabs already are) is an excess and a greater excess just causes the elimination process to work harder.
I also wonder if every other day jabs set this elimination system up to work at a certain rate and the body then sees this as the standard operating procedure and won't go back?
Because B12 is so fundamental, I think those of us with the greatest deficiencies, and therefore most damage due to it, are most at risk of "broken mechanisms" and therefore should be the most careful not to cause a sudden "boom and bust" scenario.
As you can tell, my ideas are only in layman's terms and I am not backing them up with links to the papers I have read which have given rise to them, but I know, if I had the chance to start my B12 treatment again I would definitely try only weekly jabs to see if that would be better and maybe prevent the need for every day jabs forever!
The other thing you could try, if you are desperate to do frequent jabs, is doing your first ones with a longer gap between them and then gradually increasing the frequency. I very, very strongly suggest that if you do decide that they aren't working, you do a gradual and phased withdrawal of them. While they are in no way addictive, you don't want to upset your body, which is already compromised by something, by giving it another sudden change to cope with.
For living things, think "a slow hand is a stroke, a fast hand is a slap!"
Also please be aware that all vitamins and minerals are interdependent so if you put in a high level of B12 you are likely to need extra nutrition across the board to supply the "materials" needed for the cell reproduction and energy release that the extra B12 will allow.
You can't build lots of houses with just lots of windows - you need bricks and tiles and doors, etc, too!
So long as you aren't taking anticoagulants or have haemochromatosis, a good place to start is taking a broad spectrum multivitamin and mineral supplement (basic supermarket A-Z ones are as good as, if not better than more expensive branded ones) and trying to get additional folate, potassium, magnesium, iron and vitamin D from your diet to balance your increased needs.
Ideally you will get blood tests done for all these but I appreciate that if you are in the UK this won't be possible for a few weeks due to the current shortage of phlebotomy tubes so the only safe way to do this is through your diet. (Maybe another good reason to go easy with your B12 jabs)
The last point is that I'm afraid that if your problems are B12 related it will take a while to heal the damage caused by the deficiency (it just takes a while for new nerves, etc, to grow) so your recovery will be gradual anyway. The good news is that if it is the problem you will keep improving for many months, maybe years to come!
You have much more medical experience than me! Couple that with an enquiring mind and an intelligent way of looking at things, don't underestimate yourself!
I was akso nterested to observe that when my husband was first ill with a blood sugar of 30. Aged 32 and still commuting to work !
A zombie /shut down.
Before he went for a test the penny finally dropped for me as he was peeing so much.
Stopped all caffeine and beer in z attempt to control this . Then his breath was bad.
Getting ketones!
He was put on tablets!! By Gp that failed.
Then into hospital and put on an insulin pump.
Induced hypos at 6/7
Tgen when treatment commenced and his blood sugars mire stable he became 'brittle'
Reason i think was his pancreas was kick started by the artificial insulin
Our bodies as you say really try to correct themselves
This response had then had to be 'overidden ' to stop the constant collapses from sudden no warning hypos.
That's when a short and fast acting combination insulin worked.
Now of course you inject depending what carbb you've eaten.
Very sensitive still as j weigh all main carbs to get the calculation right .
Years ago when we tried yo eat out or have z takeaway a nightmare as so many hidden sugars in sauces ect
Anyway the point I'm trying to make is perhaps when b12 is dietary and you get the b12 level up quickly then stop injections the mechanism does carry on working.
But if absorbion happening but not working on 'full steam so injections continue this can msjevthd process be overridden ?.
So you stop absorbing at all but do not necessarily have PA??
I've also read somewhere thst once your body gets used to high levels it needs them to stay high to function at all.
Why don't doctors know this,,,?
We all also get rid of it at very different rates.
Which i think on my experience also differs with every b12 injection.
So much not researched.
I'm still convinced if thr demographic was different of sufferers or there was money to be made on a drug.
A company would've put money up for research by now.
Wouldn't it be great to have a steady flow of b12 and know what level we personally need to be to function,!
Need a scientist to make sense of it or a medic to
I was 200. I did daily for a week which helped, then weekly as directed and declined fast. I like others kept trying to space but for me the only thing that helped was daily injections (1/2 dose) for 3 months then started spacing.
It’s really important to get your b12 tested before injecting, otherwise the injections skew the results and can take up to 4 months after stopping the injections to get an accurate result. It’s best to confirm the problem before treating it.
Hiya Denise, I really liked how you explained all of that, in layman’s terms. It does make sense to me as before my GP stopped my injections I had 6 weekly injections which i really felt the benefit of. Since injecting myself EOD I feel worse so I definitely think my body adjusted better to the weekly!
We all seem to respond differently, so I would say try and see what's best for you. Some people do 1/2 an ampoule a day, others EOD, some once per week and so on.
Just another opinion or experience . When I was diagnosed about 1 1/2 year ago my neurological symptoms were so extreme that I was almost bedridden. I couldn’t even lift my arms, could barely walk , and had such extreme sensitivity in certain parts of my body that I could not sleep with a blanket on top of my left side. Nobody could touch me. I started with the normal protocol one injection a day for seven days but then when I did only once a week my symptoms were not improving. So I basically started taking two injections of 1000ml daily for five months and then I was able to decrease it to one injection 1000ml daily. I did try to taper it even more than once daily, but every time I did that the symptoms would start coming back. I’m a very active person ( dance teacher) with a very high metabolism. I am very aware of what’s happening with my body and what I do know is that for me I felt worse when I started tapering down too much.
At this point I self inject twice daily because I had a relapse due to trying a different brand of B12, and the COVID vaccine. The vaccine really messed up my hormones which is delaying my recovery by months! So I’ve been back again to two daily injections of 1000 ML and I’ve been doing that now for eight months ( i’m in the US in my doctor works with me ). I am grateful that I am in the US in for my wonderful doctor that works for me. She doesn’t really think I need it, but since I’m not harming myself by taking extra B12, you can’t overdose on it, she lets me take as many as I want. I know that everybody’s needs are different. I just know that now I’m back to teaching dancing and full of strength. But I’m still healing so I’m keep these heavy dose until I stop improving or my symptoms completely disappear.
I was reading your post, thank you. and I'm so happy you are teaching dance again, well your recovery from where you were is amazing. Blessed.my question is how long did it take you to get back to being physicle. I also was very active and athletic and was deficient for maybe six years it was a decline that Dr.s never found. I started with oral b12 for 6 months then in May I started to SI. I just finished 9 days straight and found out today in order to make it through the day I will also need to add oral during the day to be able to go out and spend time with the grandkids and to to functions. my anxiety gets me bad so I have to drink potassium and electrolyts . I was also trying to start every other day starting today so I did oral today then tomarrow I will do both. I just can't get any exercise at all yet I loose all my b12 and other cofactors. like imidiatly, I guess I need more patience it is 8 months for me now. thank you.
I am so sorry for what you’re going through. Yes it can take a while until we can get back to normal. When I first was diagnosed it was not until nine months that I felt almost normal but after my relapses, it’s actually taking about 4 years and I’m still healing. Mostly because menopause and the hormones that release inflammation are interfering with the healing. But I have not plateaued. Yes it can take a little while, the body has to heal, and it takes quite a while for nerves to grow back. My symptoms are different than yours so this is just my experience. I’m glad that you’re self injecting as the oral pills are not enough. If what you have is just B12 deficiency, the pills will work, but if it’s Pernicious Anemia, then your body cannot process much of the pills because you lost intrinsic factor, a protein necessary to metabolize be 12 . You have to get injections. I have now been taking 1000 mg of B12 twice a day for about at least 2 to 3 years. And it's still taking its effect. When there’s a day that I’m very very busy and I don’t get to rest, I feel more nerve symptoms and will even take a third one. You know your body l, just keep listening to it and be patient. I believe it will get better. Remember you were at least six years dealing with it so yes I think eight months it’s still a short time. Some people will be fine taking only one shot once a month or once a week but when you have neurological damage you just need more. Don’t lose hope, every day is a gift even when you’re recovering I wish I could be there and give you a hug. This has been one the hardest things I’ve gone through in my life and I’ve learned so much through it. May God bless you give you patience, hope and I pray that God will heal you fully and wholly!
thank you for your reply, and thank you for your Blessings from our Lord God. yes He is for sure healing us always and teaching us everyday. He just keeps putting on my spirit "just keep taking the supplements " healing is near so that hits me during the day and oh I just stop in my tracks and thank Him. My mind is what really through me for a loop and the anxiety was too much but it's way better and I have to stay on all the supplements throughout the day.
I’m on the US in California and yes I need a prescription from a doctor. I take cyanocobalamin and that has worked for me. I have a wonderful Dr. that works with my needs and prescribes me a twice daily 1000 mg that I need. I Self inject twice daily. Because I had a reaction to a generic brand of B12 , now I’m very careful to only take a certain brand. So I had to find a pharmacy that would supply it, not every pharmacy did . Are you on the US or UK?
I am here in the US in California as well, I have to get my methylcobalamin from a compound pharmacy in Palm Desert Ca, they need a perscription from a Dr. but I have to buy it but that ok, they ship it to me fedex. I am still getting used to the EOD injections and have been injecting for about 5 1/2 weeks now, before that it was just oral liquid, I didn't know much about all of this until i found the forum, I would be dying by now if I had not been shown this by our Lord. I do take the sublinguals everyday as well as the injections. well I won't be getting any covid vaccines since I read your post. that scares me. it takes so long to try and make a come back with this.
I was reading your post and have a question if I may ask, did you have anxiety symptoms or mental neuro symptoms? I was also wondering how long were you deficient until you were diagnosed with PA and b12 deficiency? thank you
I did not have any anxiety or neuro mental symptoms. I guess B12 deficiency affect people in different ways. Mine were all neuromuscular. It took me about nine months and 13 doctors until I was diagnosed.
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