B12 Frequency Research: Hi All The... - Pernicious Anaemi...

Pernicious Anaemia Society

31,951 members23,090 posts

B12 Frequency Research

Wwwdot profile image
91 Replies

Hi All

The frequency of B12 dosing is a regular topic so I thought I would share this in a post if it’s own.

Three months ago I revisited "What you need to know about PERNICIOUS ANAEMIA AND B12 DEFICIENCY" by our wonderful Martyn Hooper. The following paragraph on page 143 struck a cord in relation to frequency of self-treatment:

"In other words, the patients who were given large doses initially needed large doses for maintenance, while those who were started off on small doses only needed small doses in the future. Now why could that be? Often when modern-day patients ask for more frequent injections they are told that 'the more you receive the more you want' which, as far as I've [Martyn Hooper] been able to discover is based on no scientific evidence, but is a way of telling the patient that he or she is imagining that they need more injections. But the 1958 paper was not based on patient's feeling of wellbeing but instead on close inspection of the patient's blood. And patients who were given large doses initially needed large doses for maintenance, not to feel well, but to prevent their blood deteriorating. Why this was the case is not explained by the researchers and I [Martyn Hooper] haven't been able to find any papers that re-examine this phenomenon." Note my (wwwdot) addition in [].

(The 1958 paper is Darby WJ, Bridgeforth EB, Le Brocquy J, Clark SL Jr, De Oliveira JD, Kevany J, McGanity WJ, Perez C. Vitamin B12 requirements of adult man. American Journal of Medicine 1958; 25(5):726-732)

This certainly puts discussions and experimentation with frequency of injections into context.

If any member could advise how I could obtain a copy of this research I would be very grateful.

I have found the information above to be the most informative and constructive in my recovery path.

🤗🤗🤗

Written by
Wwwdot profile image
Wwwdot
To view profiles and participate in discussions please or .
Read more about...
91 Replies
Rexz profile image
Rexz

Hi Wwwdot

it is here... you will need to register but it's free.

amjmed.com/article/0002-934...

I have some thoughts on this I will reply later though as it's 4am so need my coffee!! ☕😬

Rexz

Wwwdot profile image
Wwwdot in reply to Rexz

Hi Rexz

You star! 🌟

Thank you!

🤗🤗🤗

Mixteca profile image
Mixteca in reply to Wwwdot

If you can share the key points once you've read this that would be great xx

Rexz profile image
Rexz in reply to Rexz

Just a word of caution.

My own opinion is that I view any report that is beyond 20 years as historical. Any beyond 10 I like to stay away from if I can find newer studies addressing the same topic. Mostly I try and find the more recent reports. The medicine universe of knowledge and how the human body really works is expanding so rapidly or logarithmically that what they thought they knew even 10/20 years ago can be sketchy at time.

That does not mean don't read it as there is often valuable information to be had but I try and corroborate anything from an older study with several that are newer. That's hard to do in some cases.

OK, back to my coffee! ☕

Wwwdot profile image
Wwwdot in reply to Rexz

Hi Rexz

Absolutely true.

I would be interested to see if there is more recent research on this topic. Martyn Hooper wasn’t able to find any but I think he wrote his book several years ago now!

Super sleuths to the fore! Coffee smells gooood!

🤗🤗🤗

Rexz profile image
Rexz in reply to Wwwdot

I do have more recent studies that address what I call the half-life of serum B12. As I recall they stated something like after 4 days B12 level begins to taper off and after one week, one month etc. This report got me off my monthly injections that my doctor has ordered to now injecting every 4 to 7 days based on just listening very closely to my body.

I will digitally rummage around and find them.

Geez Wwwdot that's mean of you to get me up this early and make me work!! 🤣

Rexz

Wwwdot profile image
Wwwdot in reply to Rexz

Ha ha! You love it really 🤪🤣🥰

🤗🤗🤗

Rexz profile image
Rexz in reply to Wwwdot

I do, and it literally has saved my life! 🙏Errrr, did I just say "I do" to you?!

🤣

ACritical profile image
ACritical in reply to Rexz

I find this so. I need to inject more frequently with getting older and wanting to stay active . I used to be 1 a month , then after I had another dizziness period and a fall breaking the same schoulder for the second time. I lost my nerve, my flexibility etc and then decided to up my injections. Did loading ones and tapered off to once a week. Then getting COVID and pneumonia, I again went back to loading for a long time and tapering off to twice a week . Where I am now for sure. When I feel I need it sooner I just give myself one. Always adjusting my co- factors. Blood tests checking vitamin and minerals regularly. Especially vitamin D as I found out you can do damage with too much intake.

bloedwaardentest.nl/bloedon...

Noelnoel profile image
Noelnoel in reply to ACritical

This is all well and good but I worry about a time when some of us inevitably become less sound of mind and stop understanding/knowing/caring what needs to be done to stay well. Informing one’s children, if we have them and they live close enough, they could perhaps help with injections but if one ends up in a home or hospital, well, kiss goodbye to the “luxury” of having as many as we need

Wwwdot profile image
Wwwdot in reply to Noelnoel

hi Noelnoel

I think this issue deserves to be a post by itself. It would be good if we can find a practical solution to this worry many of us have. There may be some way we can ensure we would get the help we need. We need to start looking now and finding ways to make regular as required injections happen should any of us end up in a care/home facility.

🤗🤗🤗🤗

Noelnoel profile image
Noelnoel in reply to Wwwdot

We need to start looking now and finding ways to make regular as required injections happen should any of us end up in a care/home facility

We do, I agree and although I posed the question I don’t feel equipped at this point to take it on. I’d be happy to contribute and help but I couldn’t lead

Wwwdot profile image
Wwwdot in reply to Noelnoel

Hi Noelnoel

This is a huge undertaking so we will all need to do little and often.

I will have a think and do a separate post to gather a working party - probably in a couple of months as personal issues with family are taking all my free time at present.

🤗🤗🤗

Noelnoel profile image
Noelnoel in reply to Wwwdot

Ok, will wait hear from you

ACritical profile image
ACritical in reply to Noelnoel

My fear as well. In my family we have quite a few of us with pernicious anaemia / B12 deficiency all of us on injections so hopefully when it come to that , when I end up in a care situation, I hope one of them will step up and fight my corner. I have my full medical history as I experienced on my iPhone on the Health app ♥️with the red heart on it. So doctors can read it and hopefully find it useful. I regular update and will do so if I find my new idea helpful. I did an IGene test and the useful results are on the Health app and I have given permission to have the app read by physicians. It has the adverse affects that some of medication can have on me. Also mutations of my genes that should be helpful for my treatment.

mauschen profile image
mauschen in reply to Rexz

I received B12 injections every 4 weeks after my initial loading doses in 1986.

Approximately 20 years ago my prescription changed to 3 monthly because the GP stated that the pharmaceutical industry had changed their prescription to include B12 with a longer half life.

I never believed this explanation as my symptoms became worse.

Thankfully, I was in Germany where I was prescribed monthly injections again which kept my condition stable.

Back in the U.K. since 2020 on 3 monthly injections. Peripheral Neuropathy during this time has been soul destroying as no painkillers touch it. I don’t tolerate Gabaspentin and can only take a 30mg dose of Duloxetine due to hypertension.

I asked my GP to prescribe monthly B12 injections and he wrote to a Haematologist for advice.

The Haematologist advised remaining on 3 monthly injections as the liver can store B12 for up to 5 years 🙀.

I rejected this advice because it was absolute nonsense!

WIZARD6787 profile image
WIZARD6787

The frequency issue is two separate issues. One is the frequency of injections needed to maintain blood results and not symptoms. I believe that is what Hooper was referring to. I believe he was using the effective length of an injection of 48 hours in his thinking.

The other is half life or effective duration of injections. Which I have concluded is not 48 hours as is what all experts use. The conclusion they made was based from testing on people without B12 deficiency, only considered total B12, no consideration of how the injection was utilized and was an average of highly variable data.

Pretty much I have concluded that the effective length of time of an injection is at best 4 hours.

So if you inject 1mg every other day you will have an effective 4 hours of healing every other day. Which may be sufficient for some over time. If my hypothesis is correct .50 per day would be more effective. 5 mg in 5 injections in 24 hours would be more effective etc.

Or another way to express it is how often is important along with how much.

I do not believe you will find any research on frequency of injections other than related to 48 hours as the 48 hour conclusion is considered absolute. As there are no tests for the effectiveness of frequency other than symptoms I find it unlikely any research will be conducted.

OldmanD profile image
OldmanD in reply to WIZARD6787

I'd agree with you. . . . . The earliest tests I read about were I think in Austrailia using radio marker and monitoring the urine output. . . . . By the end of 72 hours I think it was there was no B12 being excreted and what had been excreted amounted to the bulk of the injection. . . . . .I found a later test done in the US I think it was done obviously with more modern methods and I dont remember it being a lot different . . . . Certainly not weeks of retention. . . . . . The testing today is far from perfect and the testing even in recent times past was worse and often not worth doing as in total B12 results . . . . Most of the past 2 odd years I have been every second day but since before well before Xmas much has been every day I feel due to antibiotic and steriod scripts I required . . . . . I feel as if the meds strip me every day of my B's. . . . . . . I dont think the amount of size of loading doses has any real effect on what follows apart that is from a huge downer for some . . . . . There are many who get their loading doses and are happy thereafter at 3 month or 1 month intervals yet they got the same loadings as the rest of us.. . . . . And those people outnumber us on here with additional problems. . . . . I have always presumed that they dont have as many neuro type problems and or they may still have a little IF left to play with which will get less as time goes on . . . . . This is not a disease that all of a sudden switches on for most. . . . . Then there will be a lot of people who simply take waht the doctor tells them and put up with life not resally knowing or questioning whether more B12 would help or not. . . . . . .

Wwwdot profile image
Wwwdot in reply to OldmanD

Hi Oldman

A good point that PA is dynamic and not always in a progressively better way.

I am wondering whether little and often may slow the decline and if that is the case then large intervals between doses whilst not increasing symptoms may be contributing to long-term decline.

The point in the research in 1958 is that it was blood quality that was improving with more frequent B12. This is what piqued my curiosity.

🤗🤗🤗

OldmanD profile image
OldmanD in reply to Wwwdot

Personally I use 500/650ug every jab be that every day or 2nd day. . . . . . I have tried 3 days but I falter after a short time . . . . . Short as in maybe 2 weeks. . . . . . Been a while since I tried that. . . . . Lately I was using Pascoe hydroxo 1ml 1500ug but didnt use the 1500ug. . . . . I found I didnt feel any better with even 1000ug. . . . . . But leave it 3 days or more and I start to go down no odds whether I've had 500/600ug or 1500ug. . . . . If I have missed for a week i'll be starting to crash with symptoms returning . . . . But I dont need a whole heap to get me back up and running again. . . . Just several days once per day. . . . . . . I havnt felt any need to do twice a day as yet . . . . . . There is an awful lo;t on how we feel and how we expect to feel . . . . . I remember well gettong my loading doses and it was like rocket fuel . . . . However it was simply because I had became so exhausted and then had what I seen as this massive change. . . . . . Getting ill again was worse. . . . . Later 1 jab per week for 3 weeks by the clinic was a roller coaster that not everyone reports. . . . . . That was my decision time about SI as such but that is another whole story on its own. . . . . . I really could not put much faith in old reports/research. . . . . Thats right on the heels of commercially available Cyano being available and they had just got the answer to keeping all these unfortunate folks alive. . . . Bear in mind that PA was a very slow awful death that used up a load of resources and to prevent such would have been a massive savings I'd imagine.. . . . . The amounts and frequency of medication in this realm is really a mixed bag and I dont believe anyone who has experience in it can really state any particular quantity or frequency. . . . . . Unfortunately what we have seen too much of are doctors being dismissive of patients symptoms, as in there is nothing wrong with you, its all in your head. . . . . . . I had that experience in the RVH belfast. . . . . . If you were not feeling good in the first place this is no help at all being told its in your head. . . . . . I well as neuro and exhaustion had actual physical symptoms but B12 was never ever thought of let alone mentioned. . . . . When I first started out on this route and found PA Society which was before Health Unlocked thingy I honestly thought that the frequency of some of these people who SI was bonkers. . . . . But as the first year wore on I realised maybe there is sound reason for all this B12. . . . . . . I would hate to be a doctor with an interest in this subject and have to go though all the symptoms.feelings/notions people have some well grounded others perhaps not. . . . . Really I think we have to listen to people who have been on this road several years as placebo very seldom lasts several years. . . . . . .

OldmanD profile image
OldmanD in reply to OldmanD

Yes and blood quality is probably what they were after. . . . . . I dont know anything about the red blood cell thing but I was told it would not have been long? until I would have been anemic at the time of my diagnosis .. . . . . Nor am I aware about how long the results of having a b12 shot could have on making good red blood cells . . . . . I'd imagine they were opting for a s seldom as possible as long as the individuals remained half healthy. . . . . Red blood cells are not made overnight yet so many people who only get every 3 months feel the difference same day kinda thing

WIZARD6787 profile image
WIZARD6787 in reply to OldmanD

The life span of a red blood cell is seen as 90 to 120 days depending on which source you reference. If one accepts which I do that the issue with the red blood cells is developmental than it follows that any trial designed to correct red cell development would consider that time frame for determining if the trial is successful.

Typically a protocol is followed with no change in protocol and whatever happens happens if a physician is following a protocol already designed. Or the advice is to wait and hope.

OldmanD profile image
OldmanD in reply to WIZARD6787

100% for what its worth from me. . . . . All I have read and I do not understand these things as you do points to recovery over a period of weeks/months. . . . . . . Yet so many say including those I meet personally that they are boosted by B12 and think their Iron levels are helped alomst immediately .. . . They have been told that they have anemia and they associate thier symptoms with such. . . . I roll with them. . . Its easier that way . . . . . . . . . . I remember being told my blood cells were near normal at around 12 weeks after them being borderline at time of first injections. . . . . But it was made plain to me in rather up front terms that I didnt have anemia. . . . . YET. . . . I would imagine that the PA side of things is a much slower creeping type of thing either up or down more so than those of us suffering from the myriad of other problems. . . . . .

WIZARD6787 profile image
WIZARD6787 in reply to OldmanD

I did not do a lot of work on it. I have just always assumed that the loading dose concept was not valid. I do know that if you're fighting a physician it's a emotional victory to get loading. Doses does not follow that it is a justified protocol.

OldmanD profile image
OldmanD in reply to WIZARD6787

Having read about some who have the loading doses at one per week for 6 weeks or whatever they seem to be asking about benefits they havnt yet seen and symptoms they didnt expect. . . . . . Those getting loading doses closer seem to ask different questions and have different symptoms . . . . . . . I was one of the close together bunch. . . . . . . Then after my 3 week roller coaster ride and another few weeks I stated to SI, once per week to begin with was the idea but roller coaster again albeit not so extreme first week . . . . . 2nd week was not good so I opted for every day and continued on every day until I could not stick the acme that had erupted at which point I went back to every week and the acme began to calm down. .. . . Unfortunately so did everything else calm down it seemed apart from my scalp which decided it was going back to normal tear your hair out kinda thing. . . . . . Finding B6 was a biggy for me I must admit . . . . . . Without it I would be quite limited in my intake of B12. . . . . . So I do think loading doses do work or worked for me twice if I am correct but I dont think once per week loading is of much value . . . . . . What research I have found strongly suggests that by the time they are receiving the next jab the body has been ran out for between 3 to 4 days. . . . . . I know what those feelings are like and not unlike some of the users on here. . . . . .

WIZARD6787 profile image
WIZARD6787 in reply to OldmanD

Few people try B6. Sad as it can relieve symptomtoms that B12 will not in some people. B6 does not get much press.

Few years ago I did some reading on homosistein. In that reading I came across that Betine was used to treat high homocysteine. I had read about an association with homocysteine and some comments in the literature I read that the acne like symptom might be caused by the body producing homosistein from healing with B12 supplementation although no action was mentioned.

I took Betine for a few years and my acne like symptoms were resolved and I discontinued. When increasing my daily frequency I would sometimes get one bump that turned red and it would resolve in a day. I have had a few in the last year that go away in few hours. Some bumps tend to appear in the same place. Some I had for decades. It is resolved.

I know the loading doses can have a positive effect and that some people suffer between loading doses and or after the loading dose is stopped. I question if the loading protocol has any effect that every other day would not improve. I do not know of any medical rational not based on hematology which does not consider symptoms only blood tests.

Wwwdot profile image
Wwwdot in reply to WIZARD6787

Hi Wiz

Interesting about B6 as I take that daily and so many symptoms have improved - spots in hair - gone; spots on thighs - gone; spots on chin - gone; spits on eyelids - gone. I hadn’t associated the clearance with B6 - an eye opener!

Thank you

🤗🤗🤗

WIZARD6787 profile image
WIZARD6787 in reply to Wwwdot

Some on this forum give advice to only take very little. That is based on one study by nutritionists which I do not consider credible although it has been adapted in the UK. Sad more people don't take it and benefit.

ACritical profile image
ACritical in reply to Wwwdot

Can you tell us the brand of your vit.B6 please. I have tried supplementing alas my tummy isn’t having it on a regular basis. I tried finding injectable ones, only folic acid ( which is the wrong form of folate) you can find on the market. I now use vitamins supplements ,individually, in a liquid form, under the tongue. I don’t suffer from acne much with the high dosis of Hydroxocobalamin I regularly inject. So perhaps those drops do some good. 😊

I have started a new project, injecting twice a day, morning and before bed. Not forgetting co-factors but not changing the dosis. 2 days in, slept fitfully all through the night, 8 and a half hrs!! 👌🏻 my eye sight seems to improve somewhat, this has happened before when I upped the dose.

Wwwdot profile image
Wwwdot in reply to ACritical

Hi ACritical

Well done you for being open minded and courageous!

Keep good notes so you can learn and adapt - early days but looks promising.

🤗🤗🤗

ACritical profile image
ACritical in reply to Wwwdot

I am 72 and have no time to wait for new medical research to be done and implemented so have taken management of my health into my own hands. I did so after I was told My regular injections were not being continued as and when I required them. Then 1 a month but I could have one once in 3 month and not a day earlier as I found out when I tried. I moved back to Kent in U.K. and there the young GP just humoured me and let me have them when requested. Then COVID happened and all changed after that.

OldmanD profile image
OldmanD in reply to WIZARD6787

For the life of me I cannot remember where you are located. . . . .. And I did once read similar about homocysteine, healing and B6 but I cant remember where either. . . . . I have all that on shortcuts on the last laptop which wont start up. . . . . But anyhow. . . . . I dont think the B6 thing is unknown everywhere at least not Europe as there are multiple listings inc those by Pascoe etc for B6 Ampoules. . . . .I think I have both Pascoe and Hevert in B6. . . . . So if its available people somewhere in Europe are using it. . . . . . . Maybe Europe is more to the fore on all of this . . . . . I have lost all faith in the UK services. . . . . .

WIZARD6787 profile image
WIZARD6787 in reply to OldmanD

B6 deficiency has the designation as rare.

Very few report using it at a dose that is not just at the level of cofactor.

I have found it to be in not in common usage even though more available than B12.

I am located in the State of Confusion. Population everyone just some of us face it. 🙂

A am in Southern NH USA. And You?

OldmanD profile image
OldmanD in reply to WIZARD6787

Republic of Ireland . . . . . Used to live in NI NHS land. . . . . Glad I moved. . . . I'd be dead by now had we not moved. . . . . So if it is not in common usage why is it readily available and the dates are good so it is not old stock I am receiving. . . . . . Is there a possible difference tween here and the US. . . . . . . It def works. . . . . And it is selling well as the stock numbers go from 100 to zero pretty quickly although we cannot see where it is actually destined. . . . Has it a rare designation, same as PA not so many years ago prior to B12D being noticed more often and/or more doctors seeing beyond their noses. . . . . . UK doctors are bad at present but were horrendous not so long ago being in what seemed denial of the very subject. . . . ..My daughter learned about vitamins as she done dietetics but the doctors a few years ago didnt spend a single day on the subject and are not much better yet as my sons woman is an anesthetist and tells me similar that they are taught that vitamin deficiency is rare because we have such a good diet (hahaha) and so much is supplemented today. . . . . I am reading via a quick search that on one hand sciencedirect.com "Overt vitamin B6 deficiency is rare in developed countries" yet o the other on nih.gov "24% of people in the United States who do not take supplements containing vitamin B6 have low plasma PLP concentrations (less than 20 nmol/L) ". . . . . .Which would be back with your homocysteine subject again but it all linked I feel Now that is simply headlines and I havnt read much in well over 2 years on the subject and I am not an academic at the best of times . . . . .

WIZARD6787 profile image
WIZARD6787 in reply to OldmanD

Perhaps you are utilizing inductive reasoning?

The fact that B6 is commercially commonly does not mean that a diagnosis and therefore treatment of B6 deficiency is not rare.

I am writing about B6 deficiency not dietary shortcomings in general.

B6 is used as a weight loss supplement.

If you want you can post your experience with B6 and the improvement and see what comments you get maybe the attitude has changed in the last 6 months.

The test for B6 is not definitive and the few skilled practitioners who do DX B6 deficiency do so by symptoms and then prescribe a trial of B6. That is outside the skill of most practitioners on both sides of the pound.

OldmanD profile image
OldmanD in reply to WIZARD6787

Back to the skills of practitioners which harks back to our common problem in B12 . . . . . Yes I do reason. . . . many of us dont have much option. . . . Asking for help didnt get us far. . . . . Getting told "its all in your head" certainly does not inspire us into blind faith in science or medicine kinda thing. . . . . Knowing full well that all we wanted to do was continue to work hard and play hard but the wind had stopped blowing in our sails. . . . . .Everyone else's sails are full but not mine. . . . . . It is not so very long ago that many if not most would have had us prosecuted for SI B12 if they'd have had the chance. . . . . . The UK has done as near to everything in its power to stop us. . . . . . It certainly has not helped not from any corner despite the mounting evidence. . . . .. Some of Europe on the other hand has moved forward. . . . . . Fortunately the law most places didnt allow for such persecution and so many of us find ourselves in a much better world today and thanks on no small part to The PA Society and here on HealthUnlocked. . . . . I have posted in connection with the use of B6 and have not faced any real negative push back . . . . . The post did not actually generate much of anything apart from a couple of comments and the fact that a few did supplement orally with B6 and found potentially similar results with acme and a couple other symptoms. . . . . We have folks arrive here who simply cannot get help anywhere . . . . They are failing away as such potentially because of the lack of B12 . . . . . They are in a similar position to where I found myself well over 20 years ago... . . . .. The only thing being different being the fact we have this forum and knowledge is shared.. . . . . If I had had the info available . . . . The early WWW searches I performed then if performed today will quickly lead me here to this forum, to this discussion. . . .. . . If I had been so lucky 20+ years ago my hands might work better today along with a few other bits but the hands being very important to type with but they do jumble the letters up rather and it makes grammar a right pain . . . . . . . . . .The letters are near to alwasy all there just julbmed, , , , , just like that. . . . . . . . I could neither read nor write cursive and to this day cannot . . . . .Neither can I read music but i can play several instruments but have little interest. . . .. . . . . Both may as well be Klingon. . . . I got the daylights hammered out of me for the pleasure back in the day. . . . . My grandfather suffered similar for being left handed like it was some kind of evil affliction . . .. . The fact that almost all books and data were printed did allow me to read which I have done and enjoy and since even before computers became cheap they were a godsend to me for obvious reasons. . . . . . What has all that got to do B12. . . . If I'd have had B12 earlier my hands would wokr better and I'd not have to perform many more times corrections than most. . . . Knowing what I know now it could well be that even my problems with cursive letters could stem back to B12 deficiency. . . . . . Many have been down the route of visiting a doctor or indeed several with no joy . . . . . They then usually I feel out of sheer frustrations break out of their shell and devil may care get themselves some B12 either via a beauty salon or by being pretty courageous and SI. . . . They reappear here in a few months with good stories on most fronts and we usually commend them for being courageous in the face of adversity. . . . . That is accepted for B12 today. . . .. It could well be the accepted norm for B6 in years to come. . . In exactly the same way as my GP took a couple of numbers in conjunction with my symptoms and gave me B12 based on what limited information she had available to her. . . . . . It may well be that in 5 or 10 years we read here about combining B vitamins for better results. . . . . maybe even severla vitamin families combined . . . . .

ACritical profile image
ACritical in reply to OldmanD

Wow 🤩 so much to read up on and experimenting with. Thanks all of you!!! Just looked Pascoe B6 is im and iv it says on the box. I might email them and ask them why not suitable for sc.

OldmanD profile image
OldmanD in reply to ACritical

It is fine for SC but some countries dont recommend SC so SC is often left out of the labeling. . . . . . I presume you want to SC. . . . . Near all Cyano is recommended to be SC and I find SC suits Cyano better whatever way it works. . . . I have used Pascoe Hydroxo on and off for a few years and do SC in tummy if in the car cause I cant get leg to relax right sitting there so it hurts. . .. . . . But is it slower to the system via SC. . . . . IM is much faster. . . . . I am not a medical expert but have tried most things B12, B anything really. . . . . .Editing in a bit xtra here. . . . To be honest it has been a long time since I even checked about SC or IM on any of them. . . . . . . . But for SC I use two sites as I limit each to max 1ml fluid. . . . .

ACritical profile image
ACritical in reply to OldmanD

Hydroxocobalamin can be injected subcutaneous it says so on the box. It doesn’t say it on the B6 box. Did you inject the B6 from Hevert or Pascoe subcutaneous?

OldmanD profile image
OldmanD in reply to ACritical

I have both but have only used Pascoe. . . . . .Pascoe is smaller is it not. . . . Hevert has made its way to the back of the fridge. . . . . You;ll be fine SC. . . . . As I said IM is too painful in the car so its all SC in tummy and I take B6 every time I take B12 , , ,

ACritical profile image
ACritical in reply to OldmanD

I mailed Hevert to ask about it, they answered and asked to ring them tomorrow to advise me that way, not wanting to put it in a mail, I presume So if something does go wrong it’s their word against mine.

Thanks, I have put an order in.

OldmanD profile image
OldmanD in reply to ACritical

I went there and looked for the hevert B6 but it is actuall B9 hevert that is actually up there so no info there for ye. . . . . . Thats why its back in there.. . . . I dont need that one. . . . . Only one that hasnt worked to my benefit so far. . . . . Let us know what they say. . . . .

mauschen profile image
mauschen in reply to OldmanD

In the U.K., you can question as much as you want, the simple answer is no.

Doctors are told not to give out more B12. They have started swapping some patients over to tablets.

The impression I get, is that they think we are all hypochondriacs!

OldmanD profile image
OldmanD in reply to mauschen

I lived in NHS land up until a few years ago. . . . . most of the above refers to NHS in NI. . . . . . .

ACritical profile image
ACritical in reply to WIZARD6787

Do you not find to be sooo tired after injections on the days you inject, I.e.every day for you so it seems. I feel exhausted and perk up the second day , go alright for another 1-2 and back to flagging in energy, difficult taking the stairs and eyesight less clear.

Wwwdot profile image
Wwwdot in reply to ACritical

Hi ACritical

I know your Q was to Wiz but I am responding too. From my experience I am more tired due to one of two things - not enough B12 to support healing (which doesn’t seem to be linear) and not enough B12 for increased activity (social, physical, mental and emotional).

When my injections broadly keep pace I don’t feel too tired between injections. When I was every other day I had active day, tired day, active day, tired day and I couldn’t mentally cope with the up and down.

I now inject several times a day and my mental and physically energy is more even and my blood tests are improving too. ie I am no longer scraping the bottom of the normal range.

I do not experience any “upturn” after an injection- just a downturn and return of symptoms if I delay or miss a jab.

Fascinating isn’t it!

🤗🤗🤗

WIZARD6787 profile image
WIZARD6787 in reply to Wwwdot

Hey Wwwdot jump in at all times.

My upturn is from when I start a new design and not related to an injection. When I reduce or start a trial to compare one form to another I sometimes experience an immediate downturn and that is good information to me.

I am intellectually exploring a concept of exceeding my body's current ability to heal which is not using up my B12. I will write on it sometime. I want to explore it to make sure the concept has a chance of being valid. I call that letting the concept see the light of day. All my ideas have value to me some do not make sense after they see the light of day. one way the creative process is for me.

mauschen profile image
mauschen in reply to Wwwdot

Could you be addicted to self injecting?

ACritical profile image
ACritical in reply to mauschen

Good question if you look at it that way… back to that…. Placebo… psychosomatic… It’s all in your head…

Image of Einstein describing one of his truth.
OldmanD profile image
OldmanD in reply to Wwwdot

Curious. . . . . . Do you SI the full 1000ug/ampoule of a reduced amount when several times per day?. . . . . .

Wwwdot profile image
Wwwdot in reply to OldmanD

hi oldman

I inject 4 x 1500ug Hydroxocobalamin every 3-4 hours. 1500ug simply because I can’t get 1000ug from my usual supplier.

🤗🤗🤗

OldmanD profile image
OldmanD in reply to Wwwdot

Your using Pascoe hydroxo same as myself. . . . .It has done well with me. . . . I only use around 600/650ug per jab. . . . . . . . . .

Noelnoel profile image
Noelnoel in reply to Wwwdot

May we have the name of the B6 you use please

OldmanD profile image
OldmanD in reply to ACritical

You have symptoms associated with lack of B12 so try more frequent . . . . . Not more quantity . . . . More frequent. . . . .

ACritical profile image
ACritical in reply to OldmanD

Oh yes , as soon as my B12 injection has been used up, my symptoms come back . I am now every day injection again and from tonight I am going to inject just before going to sleep. See if healing when I am relaxed can be established even better. I’ll let people know.

OldmanD profile image
OldmanD in reply to ACritical

I'd be really interested in how this goes for you . . . . . I have always done the morning thing just before my first nebuliser and then breakfast but after tummy tab and bathroom. . . . . Morning takes forever. . . . . I kinda avoided an evening jab as I on occasion cant sleep and am afraid the B's might make that worse . . . . . Report back quickly please. . . . . .

B12again profile image
B12again in reply to OldmanD

Interesting! So how do you manage the smaller doses? I’m assuming you may have to take a single ampoule then divide into doses. How do you practically carry this out and what size graduated syringe do you use?

OldmanD profile image
OldmanD in reply to B12again

Several ways to look at these things . . . . . You dont have to use all 1500ug. . . . . . If 1000ug was satisfactory why use 1500 .. . . . . If the time frame between jabs is short most probably dont require 1000ug either .. . . . . Little and often . . . . I am daily more or less . . . . . . . If you want just 1000ug just use 2/3 , 60% or 0.6 of a 1ml syringe . .. . . I have used the same ampoule the following day. . . . . I have used them on day 3. . . . . . Someone here some time ago went at length explaining that this stuff is pretty innocuous and if handled with reasonable care it would be difficult to do it any harm. . . . . . I used half. . . . Scrap the needle for sure . . . . I use the same draw/large needle which had its plastic cover reinstalled to draw up the remainder of the ampoule. . . . Mind you always loose a little in the needle no odds how you do it so you could be getting big half followed by a small half. . . . I then take off the draw needle and dispose and fit the new smaller needle . . . . I then push the plunger until the fluid is just about to enter the needle . . . . Just to you see it enter the orange bit Note . . I used to keep it in the drawer but I have a fridge now and would put any such in there. . . . . I remove 10 ampoules of B12 at the time and store at room temp. . . . I remove others as and when and hold them in my hand for a few seconds. . . . . There is no official guidance of this and many may disagree so I do not promote it but if ye ask?? . . . . . You kind of have to work out is it worth it for £1.80 or whatever. . . . . . You are still using a 2nd needle which is already a small part of the cost. . . . . . I am currently using Cyano which is coming in 1000ug 1ml and about half the price of Pascoe and I been using near to all of those. .. . 0.7ml..... If you choose to measure everything it is difficult to completely empty an ampoule and there is a little waste left in your needle and end of syringe so 3/4 of a 1000ug 1ml ampoule which if measured out is around 650ug. . . . . . I use 2ml syringes as they are cheaper and every X days or so I am adding another B vitamin which is doable in a 2ml whereas I used to have to SI twice on the same day which while it didnt bug me too much none of us enjoy this caper .. . . . . . . ..

Wwwdot profile image
Wwwdot in reply to OldmanD

Hi Oldman

I keep the dose the same as it was this dose that gave me the greatest improvement before I then needed to increase - that so doesn’t mean a lower dose could suffice.

Defo worth a thought and perhaps an experiment or ‘trial’ as WIZARD6787 would say.

🤗🤗🤗

WIZARD6787 profile image
WIZARD6787 in reply to ACritical

Last trial was 1.5 mg of adenosylcobalamin and 1.5 mg of methylcobalamin 5 times a day including setting an alarm and injecting at night. 50 mg of P-5-P B6 twice a day to treat B6 deficiency.

The least I ever injected was 1.5 mg a day. This was just suffering as I did not inject more as I studied.

I successfully eliminated symptoms injecting 1 mg 3 times a day of hydroxocobalamin along with 6mg of Adeno sublingual three times a day.

I have to take 50 mg twice a day or I experience the pain of peripheral neuropathy.

I now design based on healing my neurological system. eliminating the symptoms associated with B12 deficiency is not my standard of successful treatment.

ACritical profile image
ACritical in reply to WIZARD6787

That takes a lot of time in your day? Limiting going out and such? I am considering injecting before bed see if that helps as well as taking Methylcobalamin drops under the tongue during the day. I did buy the Oxford ampoule/ bottle containing Methylcobalamin and received the injection fluid from Germany but have not dared to use it as I question the safety of using it more then once.

WIZARD6787 profile image
WIZARD6787 in reply to ACritical

>>That takes a lot of time in your day?

I have designed/developed a system. Guessing two hours a month in doing what it takes to execute the system and I can inject in 3 min I am guessing.

I have an area dedicated to injection and a cupboard dedicated to supplies. That way I can clean those areas with 91 percent alcohol.

If I am going to be out and about I have a system where I prefill syringes and take them with me. I took a piece of wood and drilled holes in it so I can keep the syringes upright. I will likely find a piece of plastic eventually which would be easier to clean than wood.

I have yet to design a way to travel and inject for a few days. I already have a system to travel, so it is a matter of adding that design work.

If traveling on a plane I use sublingual as a stop gap.

ACritical profile image
ACritical in reply to WIZARD6787

Great thought process to make it all happen!🫡

B12again profile image
B12again in reply to ACritical

I use Oxford’s methyl. They will supply the injecting liquid foc but you must state it on the order form that you would like it enclosed. I have had no problems with injecting.

OldmanD profile image
OldmanD in reply to WIZARD6787

I have read your posts about your regimes . . . . . It does interest me. . . . . . I learn a little more every time I read . . . . I dont know that it would be for me but I would like it if you'd share your across the board experiences as I think there may be part/parts some, certainly me might be interested in. . . . . . Not to technical though. . . .

WIZARD6787 profile image
WIZARD6787 in reply to OldmanD

You want a simple solution ya need to have a simple problem. 🙂

I could write about my 3.5 year study of B12. It would be a book which would be vilified and not accepted. So that is not happening.

I do have some principles that I have developed over the years.

I currently find it helpful to focus on my self treatment and results. I read what others write about B12 and how it might work. I evaluate the validity of those conclusions and always ask "so how does this influence my decisions about what trials to design." It now seldom does.

I reject totally that anyone knows what improvement and how quickly I can achieve it. This is not a rose colored glasses everyone can heal or I will heal concept. I want to take what risks I decide to take evaluated against the risk of being able to heal and never knowing.

We are all different is intrinsic and does not influence how I design my self treatment.

I do not use the try and find what works method. I evaluate and make decisions on what to try then evaluate the results compared against other trials.

I always start with risk assessment. I accept there are always risks and there are always unknown risks. I review but do not design based the worse case scenario. I tune out those who are afraid and state I need to be. I work with my own fears not those some try and give me.

I use my hypothesis that more often is more effective regardless of amount.

I do evaluate casually. I have not ever read I tried more B12 and it was not helpful. This is different than when someone chooses to reduce. I have read of people having side effects from methylcobalamin. I guess that is that the methylcobalamin is working.

Every time in the last 3.5 years I have increased frequency and or amount it has resulted in healing. Some forms more effective than others. It does not follow that it will over time.

I care little when someone quotes those that treat successfully and the success is they get paid and think they are wonderful. Some people adore them. I see them as just humans pretending they are something else. They are not the most important person in my healing, I am.

Don't know if this is what you were looking for. I did read and comprehend and gave it a shot.

I do not instruct or take instruction. I simply share.

mauschen profile image
mauschen in reply to WIZARD6787

Based on what scientific evidence do you inject daily?

WIZARD6787 profile image
WIZARD6787 in reply to mauschen

Many of us choose to exceed the medicial advice/scientific evidence available of 1 mg of hydroxocobalamin every other day.

mauschen profile image
mauschen in reply to WIZARD6787

Is it not a waste of money because if you don’t need it you will simply pee it out?

WIZARD6787 profile image
WIZARD6787 in reply to mauschen

That is the accepted understanding which I believed until I researched the origin of that conclusion. It is based on testing done on retention times utilizing the protocol used for medication and not specific to vitamins.

The testing results were varied and averaged. They were not repeated which is required for confirmation. The testing was not done on people who were experiencing B12 deficiency. The testing only measured the total B12 and not the form or whatever it was attached to. There was no consideration given to how the B12 was or was not utilized by a healthy body or a body experiencing B12 deficiency. The tests are also outdated.

I concluded if the retention time was less than 48 hours as was concluded from the testing it would not be known. I also stayed away from retention time and thought in terms of availability for healing.

My personal trials established to my satisfaction at the time that my body only utilized the B12 I injected for 4 hours and designed subsequent trials accordingly and they indicated a 4 hour effective healing time.

What others reported on this forum indicated the 48 hours retention time was flawed. Pretty much I saw peoples improvement did not correlate to the assumed 48 hour retention time conclusion.

I experience an increase in urination when increasing my B12 intake for a few days. I also experience loose stools for a while. I attribute this to my digestive system is controlled by my neurological system and that is the cause.

It seemed to me and maybe others that the increase in urination was peeing out the B12. This is not supported but I did not see that at the time.

On a personal note when you asked about my credentials I assumed you were going to troll me and that was my error. I am glad you were not.

I have attended 7 Colleges and Universities and am a certified wetland scientist and soil scientist. So I am familiar with some of the science and methods. I am also an expert in my field and know the limitations of that which many in the medicial field and those that follow them do not. Pretty much I am not impressed with myself. I am proud of the work I have done.

There is the MUSS principle and that it Make Up Stupid Shite. All professions use that principle.

It is the conclusion that matters not the amount of data or complexity to the data used to reach that conclusion.

I also rejected the 1 mg EOD as the most robust treatment possible after studying where that came from which is based on.

I do not instruct nor am instructed with regards to B12 I simply share.

Since this is so long already I noticed your username. I have a friend who was a tank commander. Any story that starts with "When you got 5 tanks." is going to be worth listening to.

mauschen profile image
mauschen in reply to WIZARD6787

Thank you for explaining.

I totally agree with your MUSS principle, I have heard it used in every walk of life. More so recently, as health authorities prepare new B12 guidelines .

Wwwdot profile image
Wwwdot in reply to WIZARD6787

Hi All

I know my pee has changed dramatically since I started B12 injections. Prior to my diagnosis my pee was light coloured and almost clear.

Since treatment it’s a variable shade of yellow/green. Discussions and research suggest this could be either or a combo of:

a) unused B12

b) increased removal of toxins

Ironically, what I have noticed is that injecting more frequently does not result in more intensely coloured urine compared to when I was injecting once or twice a day.

What could this mean? One possibility given that I FEEL so much better with several inject day is that the cell renewal system is gaining momentum so wasting less?

🤗🤗🤗

OldmanD profile image
OldmanD in reply to Wwwdot

Yellow to green to red. . . . . . Get enough it goes red. . . . . People who receive a cyano kit after a fire can get petrified if someone doesnt tell them before they go to the loo afterward. . . . . . Yes B12 does colour your urine. . . . . And no one retains it. . . . Ye put plenty in to give your body a chance at using as much as it can before it goes to the recycling depts and in most of us we dont recycle B12......

Oneash profile image
Oneash in reply to ACritical

Hi ACritical, I inject at bedtime, as I realised doing it in the morning led to me being very sleepy during the day. I put it down to my body healing. Folic acid in the system at the same time. I recently learnt there is a link with estrogen too.

The body stores B12 in the liver and recycles it through the bile duct. So if the problem is at your ileum, it doesn't recirculate. The body also scavenges B12 in your kidney filter system, putting it back in the bloodstream. But what if your nephrons are faulty? If you have a lot of inflammation, e.g. psoriasis, where cells are being overproduced and shed, could that use up supply? Can the immune system attack the B12 we inject, seeing it as a foreign substance? And there are known genetic malfunctions, maybe there are some unknown ones too.

There are so many individual potential variables to lump us into 1 protocol.

ACritical profile image
ACritical in reply to Oneash

Thanks for replying. I definitely think there is an awful lot more to the methylation process of vitamin B12, like you said taking in consideration for instance inflammations also I think about mutant alleles of our genes. I carry the MTHFR gene mutation . I wish it was easier, taking a jab , eat healthy and Bob is your uncle, all is in working order again. So I have started to inject in the evening before retiring. See how that turns out.

Wwwdot profile image
Wwwdot

Hi Wiz

Absolutely agree that it’s a multi-faceted issue.

I am just interested to see to what extent the frequency of dose has been explored and considered by the scientific fraternity. It’s interesting that it’s not received more attention as Mother Nature has a tendency to prefer “little and often” to “large and infrequent” although I know this generalisation has exceptions!

Like you, I have formed my own path based on personal, shared and collective observations but curious to know if research in this subject is progressing at all.

🤗🤗🤗

WIZARD6787 profile image
WIZARD6787

The research has been about finding biomarkers. That is what they do. Effectiveness of treatment is not what they do. That is what we do.

Mother Nature has a tendency to prefer “little and often” to “large and infrequent” although I know this generalisation has exceptions!

Agreed although nature does not identify as to gender. 🤗

Life is a marathon except when it is a sprint. Then sprint.

am111 profile image
am111

Thanks for the research paper. My experience is exactly what this paper describes, i.e. if I am on a higher frequency/dose, I need that much to improve/maintain and vice-versa and any reduction in frequency or dose leads to a return of symptoms.

I believe it has something to do with increased excretion via the bile and eventually faeces, else, for people on say daily 1mg injections, where does all that B12 go, as we know that a substantial amount is NOT excreted in the urine and the body needs only some 1-2mcg/day for its needs.

WIZARD6787 profile image
WIZARD6787 in reply to am111

>>I believe it has something to do with increased excretion via the bile and eventually faeces, else, for people on say daily 1mg injections, where does all that B12 go, as we know that a substantial amount is NOT excreted in the urine and the body needs only some 1-2mcg/day for its needs.

I have come to go with no one understands what happens from injection to excretion and that is not important how I feel is what is important. That took a lot of study.

Knowing what happens in a healthy body piece by piece does not mean having an understanding of what I should do or what happens. Conclusions drawn are not scientific just because a scientist and scientific data is used.

ACritical profile image
ACritical in reply to am111

👌🏻good question, does excessive storage in the liver not creating another problem?

WIZARD6787 profile image
WIZARD6787 in reply to ACritical

Not that I am aware.

Wwwdot profile image
Wwwdot in reply to ACritical

Hi ACritical

My understanding is that our liver storage is depleted/inaccessible/not working due to malabsorption - so our bodies are reliant on a direct supply of B12

🤗🤗🤗

Noelnoel profile image
Noelnoel

What constitutes a large dose?

WIZARD6787 profile image
WIZARD6787 in reply to Noelnoel

That is a subjective term. As is massive dose. I use numbers only.

The most robust medical protocol I know of is 1mg hydroxocobalamin every other day. Which is 30 years old and may be illuminated by the experts in the new guidelines. In most countries it is more robust by 500 +- percent. So in most countries that would be called massive. It is a comparative thing.

I just finished a 12 day trial of 1.5 mg of adenosylcobalamin and 1.5 mg of methylcobalamin 5 times a day including setting an alarm and injecting at night. 50 mg of P-5-P B6 twice a day to treat B6 deficiency.

This was positive and my most positive design to date. That is the most robust self treatment I know of. It does not follow it is the "best"

mauschen profile image
mauschen in reply to WIZARD6787

Do you have medical, biochemistry or pharmacology credentials?

WIZARD6787 profile image
WIZARD6787 in reply to mauschen

No I do not.

WIZARD6787 profile image
WIZARD6787

Have you all come out of hibernation🙂.

Bellabab profile image
Bellabab

amjmed.com/article/0002-934...

Mixteca profile image
Mixteca

Regarding individual B12 frequency needs, it begs the question of how a person who goes on to develop comorbidities and other/new symptoms take over can possibly judge how much B12 they actually need? 😵‍💫

Hockey_player profile image
Hockey_player in reply to Mixteca

It would probably help to keep a symptoms journal. Experiment with frequency to find what keeps you feeling good all the time. If you are under stress or exercising a lot, you might need B12 more often.

Phylenejo profile image
Phylenejo

often what’s in our blood is not what we are absorbing 🤓

You may also like...

Re-reading Martyn Hooper

the patient's blood. And patients who were given large doses initially needed large doses for...

Frequency of B12 injections

pernicious anaemia. I was told at the start the injections were due every 10 to 12 weeks so I...

Pharmacist Questions B12 Frequency

who is B12 ignorant. I'm in the US and I've been self injecting and receiving B12 injections from...

B12 dose and frequency question

a smaller dose of B12 given more frequently would keep tissue levels topped off before B12 is...

Frequency of b12 jabs

lovely people, I am on self administer subcut b12 injections prescribed by GP.. This has worked...