I'm in the US. I've been trying to find a better option for my Hydroxocobalamin prescription. I've used concentrated Hydroxo for the last year and a half of treatment (5000mcg/1LM). A woman I spoke to today at the compounding pharmacy sent me this article. I thought this was really interesting. Because of this study she said they are offering concentrated Hydroxocobalamin 10,000mcg/1ML and 25,000mcg/1ML. She said some US doctors are requesting higher concentrations for their patients now.
This makes me wonder if more people would benefit from higher dosages? I would still be wary of potential issues to organs. I thought some in this group would find this interesting. It may have already been posted here.
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I can see no reason as to not use higher concentration. Better still would be a time released B12 that sustains patients throughout the day. Maybe a implanted B12 capsual straight in to the gut would suffice ! 🙏
I inject twice a day but still seem to wilt early evening. I do feel a higher concentration would be benificial to many.
You should try taking more. I was afraid of taking more until I found out that I actually needed more.
Once I started taking 5-10mg folate, the B12 has begun lasting longer and if I keep it up like this, I feel like the improvement is so much I'll be able to wean off it in a few months and be able to space out.
Before that, I was only taking 500 mcg and I began needing more and more B12 injections to have the same effect.
The RDA of B12 is 2.4 mcg and folate is 400mcg. Which means in the ratio folate is supposed to be higher than B12, after the loading doses.
I hope Technoid and WIZARD6787 will comment at some point.
I self treat and current take folic acid, magnesium and ferrous fumate annd vitamin D2 and K3 and Betaine and pepsin supplement daily and 4 x 1500ug Hydroxocobalamin via SC injection. I also take B6 once a week too.
I cannot manage on less B12 unless I “slow down” significantly mentally and physically which I am loathe to do.
I will read with interest and I would love to know the credibility of this research if Technoid is around.
I do currently yes. I started EOD and that was fine and addressed my symptoms but as I recovered more and became more mentally and physically active EOD wasn’t enough and I “ran out of steam” with some mild symptoms before my next jab.
so I went to ED and that was fine for a few months but again my recovery improved and my mental and physical activity improved and I began to “run out of steam” and get mild symptoms again.
So I went to twice a day - ditto.
Then 3 times a day - ditto.
currently 4 times a day ie every four hours and I can now get through the 24 hours without symptoms and leading a normal life I have actually been able to return to work which is a HUGE win!
The other day I needed 5 jabs in one day - it was very hot and like I found last year I need more B12 when it’s very hot I also need more B12 when it’s very cold but I can counter that by not going outside if it’s too cold.
I have tried reducing to three times a day but whilst it appeared to be successful a few days later I began to get cramps and neuralgia symptoms and anxiety attacks in the night so I am back to 4 a day. It’s costly as I self treat with no help from GP but if I am now able to work then it’s the right path for me and at least I have money coming in now .
I wanted to suggest that you try taking a higher amount. ☺️
I'm going to sound like a broken record but let me copy & paste my last reply on this matter.
"You should try taking more. I was afraid of taking more until I found out that I actually needed more.
Once I started taking 5-10mg folate, the B12 has begun lasting longer and if I keep it up like this, I feel like the improvement is so much I'll be able to wean off it in a few months and be able to space out.
Before that, I was only taking 500 mcg and I began needing more and more B12 injections to have the same effect.
The RDA of B12 is 2.4 mcg and folate is 400mcg. Which means in the ratio folate is supposed to be higher than B12, after the loading doses."
"The RDA of B12 is 2.4 mcg and folate is 400mcg. Which means in the ratio folate is supposed to be higher than B12, after the loading doses."
No. There is no evidence that the bodys folate requirement changes linearly in proportion to the amount of B12 available. You cannot simply the scale the ratio's required by looking at the RDA's. The folate cycle is a highly regulated, central metabolic process and does not use up every ounce of B12 that is available. B12 is a co-factor to enzymes, NOT an enzyme itself. It does not control the speed of the folate cycle but only enables the enzyme (methionine synthase) to control it as long as adequate B12 is available.
There is some evidence that in those with significant MTHFR variants, as much as 800mcg folate may be optimal but it is quite possible to get this amount (and more) from a high plant-food diet. If that is not something that is desired, there are easily available folate supplements from 200-800mcg. There isn't any indication that more than this would be needed as a long-term maintenance dose except in some kind of inborn error of metabolism situation or other fringe cases.
"When a person takes MeCbl and/or AdoCbl, and a relatively small dose of l-methylfolate, methylation starts. More healing starts than can be maintained by the dose. The body "directs" folate to about 6 or 7 layers (researchers speak of "triage" for B12 and folate) separately. So some levels will develop deficiency symptoms at the same time as some layers are healing. When enough l-methylfolate is taken, all layers can have sufficient folate and all the folate deficiency symptoms disappear."
Posted by Freddd
The difference that taking this advice has made in my improvement is undeniable.
QianYunxi Phoenix Rising is a forum that is full of nonsense and orthomolecular dosage protocols. I have no idea what Fredd is referring to about the body sending folate into six or seven "layers". There are many outputs from the folate cycle, I have a good understanding of them but I don't see where the term "layers" is coming from.
The Phoenix Rising forum is the perfect example of combining poor understandings of biochemistry with the hazards of placebo and nocebo in terms of interpreting perceived results from self-experimentation.
I have no doubt that getting adequate folate is important. Where I am skeptical is of the need to take 25-50 times the normal amount of folate just because a lot of B12 is supplied. There is nothing that I know of in biochemistry which would suggest that that is necessary, and in the case of folic acid, there are indications that such high doses may not be without risk either.
Then why is the RDA of folate naturally much higher than B12?
Even in nature, it's like that. Why?
"Phoenix Rising is a forum that is full of nonsense and orthomolecular dosage protocols. I have no idea what Fredd is referring to about the body sending folate into six or seven "layers". "
I cannot deny the success of the results. And that's what matters.
Ever since I began taking more, I feel more normal than I have in years and don't feel as many dips. I feel like I can generally self regulate better, if that makes sense.
And Freddd himself managed to keep his rare condition of needing a lot of B12 under control with his methods.
Where do you think he would have been if he obediently waited for all studies to come out before he proceeded with treatment?
That aside, is injecting yourself with a lot of B12 multiple times a day or a week when you don't have pernicious anaemia and just a B12 deficiency a completely and properly studied phenomenon, or aren't we also pushing the boundaries of science with that?
At the end of the day, it's up to you to decide.
You have been very rude and arrogant the way you went about with this, and that says a lot.
>>You have been very rude and arrogant the way you went about with this, and that says a lot.
I concur. I find Techinoid to be a good source of studies and articles. Their evaluation is often incorrect and dogmatic.
The constant use of attacking any source that they do not want to believe and expressing themselves as THE abator of truth is laborious.
Pretty much if I followed their understanding of how to self treat and why, the result for me would be unnecessary suffering. It does seem I am not alone in that.
An expert of themselves expressed as a global understanding of the human body.
QianYunxi "Then why is the RDA of folate naturally much higher than B12?"
Because of the complexities of metabolism, many nutrients are required in varied amounts. Folate is the main "fuel" of the folate cycle, it is the central substance that is converted through different forms to produce the products of the folate cycle. B12 is not a fuel but more like the oil in the gears of the folate cycle. In biochemistry terms it is a co-factor that is necessary for the action of the enzyme methionine synthase. This limited role does not require B12 to be present in vast amounts - just enough for the enzyme to function.
B12 is also a co-factor for a second enzyme but probably no need to get into that here.
I am not disputing your success with the high dosage folate protocol. But I am not at all convinced of its necessity. I do not know anything about "Fredd" from the phoenix rising forum but the quote provided sounds like pseudoscience to me with its vague references to levels and layers.
The point I was making was that just because large amounts of B12 are injected, it does not follow that correspondingly and proportionately larger doses of folate are thus required also. There is no obvious reason why that would be the case.
You are quite correct that injecting B12 multiple times a day for an extended period is not a very well studied phenomenon. All current indications are that high dosage B12 is completely safe but it is fair to say that the clinical safety of very high dose and very high frequency B12 injections have not been tested.
There is the possibility of affecting one carbon metabolism in a way that perhaps had not been discovered yet - for example some papers indicate that with frequent high dose injections, less intracellular metabolically active B12 is present than in those not injecting. Other studies have found antibodies to transcobalamin to be present with high dose treatment (the antibodies did not seem to affect B12 availability but are a noteworthy phenomenon). With very high frequency injections there is also the consideration of accumulated muscle tissue damage if sites are not rotated carefully.
Of course, at the end of the day, it's up to the individual to decide, how could it be otherwise?
I can only provide my opinion based on what I know of the science or have learned from the forum.
Is your folate high? Mine is high and I don't take it. So I'm afraid to take it. But I don't feel like im absorbing my injections as well as I could. But I really don't know. Thanks
When diagnosed my folate was so low I was put on high dose folic acid - it took about 6 months before I was above low and my level quadrupled. I think my folate was 4 and it was 16 after 6 months so I continue to supplement on the basis of 200ug per injection.
I don’t know what high folate means and I also done know if “normal” folate levels differ person to person.
Thank you wwwdot. My folate is 24.8 and the high range is 20 so I never take it. High folate could be a sign of a B12 deficiency which is why I don't understand why my folate has not gone down in almost 3 years of injecting B12. And that's what makes me think I'm not absorbing it like I should. But I just don't know anymore.
I wonder if you were to create a post asking that question whether you may get answers from others in the forum. It’s a really good question and it’s got me thinking!!
Thanks. I find it interesting, too. I have asked it a couple times. No one can really say. My diet is not high in folate. 🤷♀️ of course doctors have no clue. I think I need more b12. I've always said we eat b12 throughout the day, not one a month. Or once a week, but 3 times a day. So why dont we just inject 3 times a day?. I've always said they need timereleases b12 like an insulin pump.
I agree. The current treatment is on the premise that we can restock our B12 store but we can’t as the B12 storage and recycle system is broken. I think that premise is fundamentally flawed which is why so many of us suffer in the bare minimum yet can recover and flourish on higher doses.
I just go by my own experience and I know I cannot cope on less than 4 injections a day - I so wish I could manage in less as I really do not like self injecting but needs must. At least I have my life back and for that I am grateful.
I completely agree 100%. I inject everyday sometimes twice, and if I forget, my feet start to hurt and then I realize that I need to remember to do it twice a day. I would like to inject more often but that means I have to buy four times the amount of B12 and that can be pretty costly. I'm going to try to buy more this month and next so I can really stock up. Thanks wwwdot. Have a nice evening.
Just a thought - for a while I was able to benefit from splitting a dose into two half doses - so your two doses become 4. I found this worked in the early days but not now as I think I am so active mentally and physically that I need the full dose. I used to draw half dose into two syringes and keep one in a sterile air tight box for later use. May be an interim solution to upping the full dose.
That's really funny that you say that because that's exactly my thought. we can't absorb 100% of it anyway so why are we wasting the whole vial on one dose when we could split it into two doses in a day? Therefore if we did it four times a day, it would only be two vials. And chances are we'd absorb more of it by injecting less more often. If that makes any sense. I feel I'm wasting half of my vial anyway by not being able to absorb it 100%. I've done that a few times. I need to be more diligent.
Yes exactky. But as I said fir me this “interim stage” of using a half dose to increase frequency didnt last long once I became really busy and active but it’s definitely worth a try.
I have noticed that in my early SI days my urine was definitely a deeper yellow when I was injecting LESS frequently but now my urine is much lighter as I am injecting more frequently. It’s not what I would have expected which suggests my body is using more of the B12 at this stage of healing than earlier in my journey. I would be interesting if there was like a litmus test for B12 in urine!
You are now on 4 times a day so going by what went before soon you will be at 5 or 6 etc a day? When does it stop. I am not knocking it… it’s what I myself experience over the decades . I feel better for awhile and then something ( covid was the culprit last time) puts me out of balance and I need to up my injection regime not forgetting to keep an eye on the co-factors. Injecting every day for awhile, now back at twice a week. I have not experienced the same delight about the positive effect I felt when I first started the injections all those years ago. Still experimenting… hoping to get it right once and for all, so I stay balanced for longer.
Thank you for your thoughts. I didn’t know where it was going to be honest but four a day appears to be the top of a plateau for me where I am able to operate physically and mentally at the activity level I am used to ie busy doing and enjoying life.
I do notice that when I miss a jab because I am busy or so engrossed I forget, I am reminded quite sharply about 2 hours after I should have injected as my teeth begin to ache, my tinnitus becomes very loud and I get a weird spacey feeling. I also have to really focus to appear “normal” to those I am with and continue what I am doing - it’s a bit like finding something easy then it becomes harder - a bit like trying to pat your head and rub your tummy at the same time - it requires concentration. 4 a day has been my plateau for around 6 months now.
I tried reducing to 3 a day when I wasn’t too busy and it appeared to work with no achy teeth or increased tinnitus or brain fog but after a few “successful” days I began not sleeping as well and getting anxiety attacks in the night plus unexplained headaches.
I went back to 4 a day and all is good again. I match my cofactors to my jab regime and I am due another blood test shortly so I will be able to see if they are still within an optimal range which I feel they will be.
The context of my self treatment is that I have probably been B12 deficient for at least 20 years so I do not expect to repair and restore overnight. I am in my 60s so I don’t not want to have a slow steady recovery that takes years and years - I want to maximise my life which is why I chose to see if I can accelerate my recovery.
Interestingly last week I began to feel I little “blunt” nothing I could put my finger on but just not as “sharp” as I had been. I knew I had missed supplements for a day or two. However when I checked I had actually missed 5 days which suggests that as I am injecting so much my supplementation becomes suboptimal more quickly if I miss taking them. Perhaps the more technical and knowledgeable people in the group could explain better what I experience? I am back to my jab and supplement routine and I am sleeping better and feel more myself.
I am hopeful that in time I may be able to reduce my B12 frequency and I hope you find the right balance too. It takes time and all we can do is try ideas and make notes and support and learn from each other!
EllaNore have you considered a test that might clarify whether that is mostly trapped methylfolate? That might indicate a persistent folate cycle dysfunction if that were found to be the case. You would probably need a private test for that though.
HI Technoid, I don't think anyone has done that test. they did an iron absorption test to see if I was holding on to iron and that seemed good. I will ask if I can have trapped methylfolate test. Thank you Technoid. That could make sense since my folate was fine before and now it is high after starting injections. Would my feet and hands hurt more if my folate was high?
EllaNore I'm unsure if this test is even available privately but it seems like a possibility worth investigating to me. I see no reason why high folate levels would increase pain in and of themselves, but if they signal a folate cycle dysfunction this could cause myriad problems. Another possibility is an issue with clearance of excess folate, for which liver or kidney tests might provide clues. Just some ideas.
Ok thank you Technoid. I don't think it is bothering me. So I think I will just increase my b12 and see if that helps things. It helps my feet that's for sure. I will keep all this in mind.
I had to reread this again as I was unsure what "dose" you were referring to. Yes, that the engineer in me in buildings its the metric per m2 or m3, so for me in this treatment it's per dose!
I sincerely hope that in time I can reduce my dose. I have been SI for 18 months now to correct what has been a 20 year decline (according to B12 consultant).
My gut is hugely improved with B12 AND diet changes.
Potassium is an unknown issue as I have no GP support but I eat plenty potassium rich foods. I have finally got an appointment albeit a phone appointment with a NHS Gastroenterologist so I am hoping she will request a comprehensive blood check including potassium.
I don’t have any potassium deficiency symptoms so far.
Frequent doses of B12 would not necessarily have any effect on Potassium whatsoever. A reduction in potassium is only expected transiently at the very beginning of treating a B12 deficiency IF anaemia is present. No anaemia, no effect on potassium. Beyond the first couple of weeks, Potassium is a non-issue except in so far that it is important to any healthy diet.
I think there is a Dr.Berg video doing the rounds alleging that B12 depletes potassium and vice versa. It has no basis in nutrition science like most of what he puts out.
Now this is an unfair question but I know you like a challenge … in simple terms why is potassium only affected transiently at beginning of treatment and the only if you have anaemia? Is that iron anaemia or another type of anaemia?
FlipperTD is the expert here but my understanding of the theory of causation here is that erythropoiesis (red blood cell production) can increase significantly if the B12 deficiency has caused macrocytic anemia and the body has enough B12 to begin replacing the misshapen red blood cells or producing new ones if the red blood cell count was too low. This can draw on potassium reserves.
The macrocytic anaemia of B12 deficiency is different to the microcytic anaemia of iron deficiency. But you can have both which takes me outside my amateur level of knowledge of this.
If the drop in potassium is going to happen it will happen at the start of treatment (first 48 hours) because that's when the anemia would exist and adequate B12 is suddenly made available. Once enough red blood cells are made and the defective ones replaced, there should no longer be any unusual draw on potassium. If I have gotten some details wrong, FlipperTD can correct me!
As I mentioned before there are differing opinions on whether this drop in potassium which has been observed in a small number of cases is really being caused by the provision of B12 or is just a correlation, but out of an abundance of caution, since the correlation was observed, the warning about hypokalemia shows up in many places describing B12 deficiency treatment or in the included information sheet with B12 injections for example. We already mentioned many times on this forum the huge list of so-called "side-effects" listed as a result of b12 treatment - symptoms that in reality likely just correlate to early treatment decline and/or symptoms of B12 deficiency itself.
"2 widely quoted reports from a single source linking a unique 14% mortality with hypokalemia during cobalamin treatment for severe anemia reflect an association without causation that should be laid to rest. Plasma potassium often falls transiently when severe anemias respond to cobalamin (or iron), but its clinical relevance has never been proven. I found no early deaths in 101 severely anemic patients with PA who were not given potassium."
Wwwdot, the journal that this article was published in, Journal of of Inherited Metabolic Disease, has an 'Impact Factor' of 4.2 for the years 2022-2023. The year that this article was published, 2020, the journal had an impact factor of '4.98' which is pretty good!
The average journal score is less than '1' on the scale, '3' is considered 'good' and '10' or higher is considered remarkable. This is a scale of how much a specific journal is cited, things generally don't get cited if they aren't credible. Informally, 'Impact Factor' is used as a credibility rating.
Interesting So published in a highly credible journal but little referenced by the medical fraternity??
If my understanding is right, is that really a surprise if the research is swimming against the tide, rocking the boat of consensus, and throwing a spanner in the NHS works?
Wwwdot, I think a score of almost '5' really is extremely good! If the average score is less than '1,' and '3' is considered good, '5' is significantly above that. That still shows a better than 'good' amount of having that information being referenced by peers.
I agree with you that B12 deficiency treatment research, and all inherited metabolic disease research for that matter, is still unfortunately probably getting fewer citation shares than whatever multibillion dollar biotech research being done that's currently en vogue with the medical/business industries of the moment. But I would call a score of essentially '5' on that data to be a big "FU" to any naysayers!! hehe
"Wwwdot, the journal that this article was published in, Journal of of Inherited Metabolic Disease, has an 'Impact Factor' of 4.2 for the years 2022-2023. The year that this article was published, 2020, the journal had an impact factor of '4.98' which is pretty good!"
So the JOURNAL has an impact factor of 4.2 NOT the article?
The average article score is less than '1' on the scale, '3' is considered 'good' and '10' or higher is considered remarkable. This is a scale of how much a specific journal is cited, things generally don't get cited if they aren't credible. Informally, 'Impact Factor' is used as a credibility rating."
What is the article score then? Sorry this is all new to me?
I'm the one who should apologize for using confusing language!!
Sorry, I see now that what I said was confusing... Impact factor is a score for a journal, not the specific research article. Apologies again for my confusing explanation. It doesn't take much for me to mix up my 'speech' sometimes, one of my lingering b12 issues!
Correct, the Journal of of Inherited Metabolic Disease has an impact factor of 4.2 as of 2022-2023, and the year that specific article we're all discussing, that journal had an impact factor of 4.98.
When I'm in doubt about how credible a research article is, I use the impact factor of the journal it came from as a gauge. If the score is '3' or above, I consider it to be from a pretty relevant, credible source. Apologies again for the mixup!
I just went back and changed 'article' to 'journal' in my first reply to your original message on this thread
Clarivate is the company which is the source of these metrics. Their journal impact factor for 2022 for the Journal of Inherited Metabolic Disease without self-citations is 3.9.
I think Clarivate's "Journal Citation Reports" which holds the full index details, is behind an academic paywall. The ratings are between 1 and 10, as mentioned by Cobalt1312.
Although somewhat arbitrary and varying according to the field, ratings of 5 seem to be considered to be good, at least in some fields.
There is actually a fairly in-depth process to vetting a journal, some common steps used by researchers before submitting work are outlined here:
Familiarity with a particular field, the researchers involved and the significant journals publishing in it is obviously a big help to quickly assessing the journal credibility. Unfortunately I do not recognize the researchers and I don't have any familiarity with the top journals publishing metabolic research so I'm at a disadvantage to quickly assessing it.
Beyond the journal itself, initial things to look at would be the funding sources and any declared conflicts of interest (in this case, no conflicts of interest were declared). After that, you get into studying and understanding the paper which, as a non-expert in metabolic diseases I can only do at a very surface level.
So I cannot say I have vetted this journal or paper but it should be mentioned that some really terrible research has also been published in very prestigious journals, so a paper being published in even the most prestigious of journals does not automatically make it high quality research. Very prestigious journals have published papers which have had such serious errors or even fraud that they have been retracted. This is always something to bear in mind.
I would need to take some time to vet the journal and read the paper fully and that seems more like a weekend task to me right now 😅
Wow, really shows that the 1mg dose is only a maintenance dose, especially at 3 monthly intervals.
I wonder how many here who have had to resort to SI daily or even multiple times a day in order to get even some slow improvements would benefit from dosing at this level.
Maybe the loading doses should be of 25mg daily for a month, then we might see some real improvement and could then surviveon the measly 1mg per 3months. HA HA. As if the pharmaceutical companies would ever allow that. They'd ensure that even less nutrition info gets taught in medical schools.
I first looked into & ordered b12 for my stepfather who was developing parkinsons, it did escalate very quickly. Unfortunately before we could get it out to Hungary for him he was taken into hospital and died of a chest infection.
When mum then came back here we used some of the injections on ourselves so as they didn't go to waste. Felt great afterwards but only had a couple each. Following some decorating work i couldn't find them and so forgot. I found the box recently in a weird place and they were indeed 5mg so maybe if we had kept using them we might not have got to where we are today. When I look back I suspect mum & I have had low b12 for many years. I also believe my late partner who was diagnosed with meniers and later found to have crohns was more likely to be b12 deficient. Similarly my mums friend who ate very little and felt amazing after blood transfusions, unfortunately they only did 2 and never investigated further.
Take care all and many many thanks for all the help I have found here
Many of the spa clinics offer the 5ml injections yet the patients that actually need it to maintain there health get a measily 1ml ! Hence why so many of us myself included need to inject more often.
It needs to be noted this study was carried out in 2019 yet an increase of dosage has not been acted upon by the NHS ! 🤔
Come little children suffer unto me - lets give the NHS a clap. 👋
This has opened my eyes up i only do mine myself twice a month they are 2ml 1000ug from Versandapo my dr only gives me 1 ml every 2 months will it be okay to use more? And i only have 400ug folate in my b complex
I think a lot of us with hindsight suspect family members had b12 issues. My mother suffered lifelong depression and bouts of exhaustion. Was prescribed antidepressants but always seemed to be taking lots of brewers yeast b vitamins, which she said gave her energy.
My stepfather on developing dementia symptoms was found to have low b12. A short course of injections returned him to his former self. Unfortunately they were a one off treatment and his deterioration continued.
I have already commented. Just a request to all when talking about doses. The quantity of liquid does not tell the dose. For example a mug of coffee with one sugar is the same volume as a mug of coffee with 4 sugars.
So what we need to compare is the amount of B12 in the 1ml and 5ml mentioned. I use 1 ml ampules but a 1 ml ampule can contain 1000ug (1mg) or 1500ug (1.5mg). I am unclear from the post how much B12 was in the 5ml?
Can anyone clarify please - I confess that I have speed read this super interesting post and thread as I am busy at work! Yes back to work !!! 😁😁😁
For my own use I use 5,000mcg to 1ML. The compounding pharmacy I spoke to is making 10,000mcg/ per 1ML and will also be offering 25,000mcg/ per 1ML soon. I was very surprised. I have a hard time finding my dosage. I asked them why they were offing such a strong concentrate. The pharmacist said that people with certain genetic conditions have shown to benefit from it and then she offered to email me the study.
It was a pharmacy I just happened to call. She was amazing, She said the team at Emory Genetics in Atlanta, Georgia (USA) is treating patients based off of this study. I’m not sure if they have to have the genetic markers though.
Thanks for sharing. Good to know that 25,000 mg concentrations are being used. I am injecting 22,500 mg per day spread over 5 doses and healing even though some hold the belief I can not or will heal following their understanding.
We have proof of that by one of our very dear admins CliveAlive who has been injecting for many years. Without his injections he wouldn't be here today!
Keep the injections going in Tom, Dick or is it Harry.
Cobalamin C defect seems to have affected the three siblings very differently, but the rapid deterioration of the first-presented sibling obviously needed a rapid medical response. One injection a day was insufficient to deal with this spiralling. This patient had fast got to a stage where the days of the week were a mystery.
The brain lesions and white matter obvious in the first image are clearly healed in the second, 3 months later. Extraordinary.
The common indicator between all three appears to have been extremely high MMA levels, which rapidly normalised once effective treatment started. B12 was high-normal.
Adult Inherited Metabolic Diseases consultants told me that, where they found genetic evidence of MMA problems in transporting B12 to cells and tissues, the advice to GPs was to ensure patients received two B12 injections per week for life. Occasionally, to their frustration, the GPs would refuse to act on this advice !
Just imagining how a request for 25 mg per week might go down.
You have to remember this ultra high dose treatment is specific to inborn errors of cobalamin metabolism, not Pernicious Anaemia. In such cases, because of conversion limitations, the approach is to completely overwhelm the system with so much B12 that it reaches tissues outside the normal conversion and delivery mechanisms. Most people with PA won't necessarily have this problem so this intensity of treatment wouldn't make as much sense.
If B12-related symptoms are unaffected by EOD or even daily injections and others markers like MMA or Homocysteine remain elevated then it would seem like it would be worth checking for the SNP's relating to inborn errors of cobalamin transport or metabolism - where this treatment would make sense.
Which is exactly why I was eventually sent to Adult Inherited Metabolic Diseases. My MMA had remained raised, in spite of frequent B12 injections, for three years by that time.
I was told that they had seen patients with MMA levels far, far higher than mine - probably with levels similar to those three siblings. At the time, the lifelong treatment offered here did not go beyond two B12 injections a week. It is possible that it has changed since then.
This research may have changed things.
If there is an Adult Metabolics team, there is also a children's group. It interested me that this research link shows young children also needing -and getting- frequent B12 injections. While this is specifically to compensate for a genetic flaw, a functional deficiency, it may also give some leverage to parents who are finding it difficult to get any help at all currently for their children regarding b12 deficiency - especially since NICE guidelines did not include any treatment guidelines for children.
Or, for that matter, for functional B12 deficiency.
Your assumption that inborn errors cannot result in PA is incorrect.
It is a fact that unless you have been tested for inborn errors it is not known if you have them.
It is a fact that only a small percentage of people have been tested for inborn errors so the number of people suffering that could benefit from 25 mg per day is unknown.
It is a case study done under the regulations in the USA that allow for designing treatment based on the individual rather than following a standard protocol. Scientific research, not GP level of understanding.
I did note that the study acknowledged that neurological system damage were and may be reversible, that efficacy of dosage has not been studied and there were no adverse effects of the more effective treatment.
Current Trial 2.25 mg hydroxocobalamin/B12 SC injection at 3mg/ml concentration, 2.25mg injection methylcobalamin/B12 at 3mg/ml concentration, 2.25mg injection adenosylcobalamin/B12 at 3mg/ml concentration, 300 mg oral Benforotiamine/B1 and 50 mg oral P-5-P/B6 4-5 times a day and 2000 mg Magnesium L-Threonate twice a day. (The Magnesium prevents the pain of cramps and the B6 in the form of P-5P prevents and heals peripheral neuropathy as well as heals my neurological system.)
I am of of those that has very high homocysteine that didn’t come down much with 5,000mcg of Hydroxo per day for over 6 months. My Homocysteine was always in the 40-50 range. The only thing I have found is eliminating most folic acid and supplementing with folate brings my homocysteine almost within range. My Mom and sister also have very high homocysteine, but no neurological issues except some (seemingly normal) memory. We haven’t had genetic testing.
Before my PA diagnosis I was getting my injections at a med spa. It was really expensive ($25 day) but without them I felt like I was dying. I had almost all the symptoms; weird gait, memory, numbness, burning, pins and needles, dry eyes, stomach pain, random shocks all over, rapid heartbeat, buzzing legs, muscle twitches, decreased vision, sore tongue, bladder probs. .etc
Once I was diagnosed my GP wrote me a prescription for concentrated Hydroxo. It has been difficult to find as single use vials with no preservatives. I recently moved to FL and that has made it more difficult to procure.
In between doses I do often use patches. I know some say they don’t work. However, when I start getting burning or itching in the middle of the night I put a patch on and this indeed helps.
The woman who sent this article to me and offers the concentrated Hydroxocobalamin is
Thankyou for posting a link to this research - and I wish you good luck with getting the treatment you need to control your symptoms properly.
How was your PA diagnosis arrived at ? Was it through a positive IFab test result ?
In the UK, getting a cause documented for B12 deficiency can present a problem:
A serum B12 test requested at primary care level that must be below normal range (range varies, depending on the statistics used in your area ) may then get you an Intrinsic Factor antibody (IFab) test. This will pick up a positive result for only about 40-60% of those who have PA, a fact clearly addressed in medical guidance to GPs. Some GPs still seem unaware of this - which leads to an erroneous belief that a single negative return totally rules out PA as a possible diagnosis. So starting a long process of eliminations based on your symptoms list, taking one symptom and one consultant at a time.
This leaves some without a proper diagnosis on their medical record, and some expected to use tablets instead to maintain their B12 within normal range.
I would never have even know B12 defiency was a thing, except an acupuncturist told me about it. She told me I would benefit from B12 injections. I began getting the injections and was trying to find a dr who would run the testing to see if I had PA. I got quite the runaround. Hematology wouldn’t see me because I didn’t have cancer, even though I had a referral from my GP. I finally found a new GP who researched and ran the Intrinsic Factor test. At this point I was getting daily injections so I didn’t think it would be accurate. However, it came back negative for IF antibioties. Since then US drs will write me a prescription for daily injections of my chosen dosage.
Thanks a million for this contact info. I am also in the US and have been struggling to find a reliable source of hydroxocobalamin at a higher dosage than 1000mcg/ml. I have contacted the pharmacy and received the information I need to place an order. You are my angel today.
So interesting, I have never had my homocysteine checked so no idea if mine is high which is why I am finding I need more frequent and higher doses of B12 to keep my symptoms at bay.
I will see if I can somehow persuade the 18-month, long awaited NHS Gastroenterologist will play ball!
I think I will post my Request List and Why on here before the meeting - knock the Gastroenterologist between the eyes! I have waited a long time after all so lots of time to learn and think!
Make sure the meeting does not get swallowed up in one-way questions about whether you ever smoked, how many units a week you drink etc etc ... instead of what you want to know. One chance.
FYI- here in the US under the Homocysteine test is had a note that says “If Homocysteine is elevated this indicates either a B12 deficiency or folate deficiency.” I think those of us with certain genetic makers do indeed have methylation issues and even though we are taking B12 and folate we are still deficient. Also, my folate and B12 levels have almost always been high. For years I supplemented with both to try to bring my homocysteine down. This was before I realized I has PA. The crazy thing is my B12 was 900 when I was having major neuro symptoms and my folate has also always been on the high end.
I did a lot of trial and error to bring homocysteine down and the only way I have found is to eliminate folic acid and supplement with folate. I suppose this means I am finally neither deficient in B12 or folate. I’m also hoping it means I will continue to heal more fully.
Thanks for everyone’s insight! This forum has been a lifesaver and has given me a lot of hope. I have healed a great deal and it encouraging to read other’s stories. This is a rough disease. However, I’m thankful it isn’t progressive and once we began treatment we can have hope of improvement.
All I wanted to add is there is lots of research papers on use of high concentrations of hydroxocobalamin in cases of smoke inhalation, there are some temporary side effects like raising of blood pressure etc, just put smoke inhalation in the search of pub med etc.
Great post and for the most part progressive comments. I appreciate and crave the shared experiences of success by not following those who claim to have answers based on conjecture.
I am 13 days into a trial of 1mg/1000mcg of oral folic acid which was positive and I am going to start a trial of .5mg/5000mcg 5 times a day.
I have in the last 13 days experienced 'fading' at about 4 pm which lessens after I inject. That is about 10 hours after I take 1 mg of L-Methylfolate in the morning.
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b12 shots - type, how much & when??
Time to buy more B12
Self-injecting B12 1000mcg/2ml ampoules
Self injecting Hydroxocobalamin subcutaneously
Is this the end of the road?
