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Sublingual and injections

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Lettie3871
Lettie3871

My daughter has been diagnosed B12 deficiency her level was 120 and has just finished the loading dose Hydroxocobalamin injections. GP recommending 3 monthly soon as loading dose finished. I have stated to doctor that i am unhappy with this as it seems a huge jump when she has been like this for years, therefore surely it will take more than two weeks to help repair damage and build levels back up.I am wondering is it ok to take sublingual Methylcobalamin 1000mcg in between injections as i really do not want her sliding back into the dark place she was in.  Also doing preventable damage to her. She has really shown a great improvement since her injections and has even started to get her social life back. 

On a more positive note,  i am mental health nurse and since daughter diagnosed 6 months ago and through the kind info on here and further research i have been preaching to my colleagues/doctors about lack of knowledge about B12 and finally they have started checking patients being admitted onto our ward and are taking more interest in the symptoms that individuals experience and link to B 12 deficiency. Already 3 patients diagnosed B12 deficient and have started treatment 😃

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  • MadgeC
    MadgeC Lettie3871

    Posted

    Hi Lettie, Good on your for getting informed. I hear that up to 20% of people are sub-clinically vitamin b12 deficient. Nearly 50% of people entering nursing homes,  50% of people who are hypothyroidic (20% of women), the people who are on ant-acids, diabetics on metformin, etc, etc. I wouldn't put your daughter on the sub-linguals as they eventually thin the enamel on the teeth (a common complaint on the web). Also the sub-lingual methyl doesn't give adenosyl, which is about 75% of your normal B12. I would start her on the b12oils as these are easy to administer and give a much better release profile.

    You are so righ about repairing the damage already done. I have recently heard of a woman who was deficient for about 10 years. It has taken about 4 months for her peripheral neuropathy to even show signs of healing. If this is indicative of what really is going on, then you are right the short amount of time won't be enough.

    • Lettie3871
      Lettie3871 MadgeC

      Posted

      Hi Madge, i have ordered b12 oils from america but am waiting for them to arrive. Ordered methyl/adenosyl one after reading your entry on a previous topic on here.  I just wondered whether i could top her up with sublinguals while waiting for them to arrive..... But i guess i will not go down that route now.

      I have been astounded by the lack of interest/ knowledge by GP/ health professionals in general. If it were not for my daughter, I too would still be ignorant about this subject myself. 

      This preventable condition should be made more public as it affects so many people on different levels. Thankyou for your time in replying. Roll on the postman. 

    • MadgeC
      MadgeC Lettie3871

      Posted

      HI Lettie, while we are on it, a lot of B12 deficiency in women can come either from hypothyroidism or from riboflavin deficiency, so the incidence will be on the increase in girls. I didn't believe it, but apparently over 80% of girls 16-18 are riboflavin deficient. It looks like it is either the anti-cholesterol lobby or something else, but the consumption of milk has dropped to around 20-25% of what we use to drink as kids. I didn't believe it until I looked it up, but it is quite hard to get your daily riboflavin (vitamin B2) without have daily milk, cheese, and eggs. This also means that if someone was a vegan they would have real issues. Keep up the education, I don't know why the doctors aren't pushing it, but then again apparently they don't study nutrition as part of the medical degree. Now that's another issue.
    • marion29181
      marion29181 MadgeC

      Posted

      Hi MadgeC, as I've been following a few of the discussions on here, and heard you mention the B12 oils before. Can I just ask how you use them? Are they absorbed through the skin, and, if so, how long would it take to get the benefit from using them? I have tried the sublingual spray, and found my teeth were on edge after using it. I'd read somewhere that it reacts with the Mercury in dental fillings? I would appreciate your advice. Best wishes Marion
    • MadgeC
      MadgeC marion29181

      Posted

      Hi Marion,

      The oils come in a pump that gives you one dose per pump depression (squirt). You apply it to the skin. You can apply it to your forearm, thigh, belly, ankle, knee, etc. You then simply rub them in like a vanishing cream. I wouldn't use the sub-linguals, I have heard quite a few comments like yours. I simply put one on squirt before I go to bed. It has certainly helped me sleep right through. If you use them through the day it gives you a sort of odd mellow feeling. If I am going for a long walk or something, I often use the oils before I go. It certainly helps my energy.

    • marion29181
      marion29181 MadgeC

      Posted

      Thank you MadgeC, I appreciate your help, and will have another look at the website to see about ordering some. I would imagine they take a while to come if they are from America? Especially at this time of the year when the postal service is so busy. By the way I also am hypothyroid and have been told I have fibromyalgia too. The last two years have been very difficult health wise, and my GP is of the opinion that if blood serum levels are up, that everything is OK! Best wishes Marion
    • MadgeC
      MadgeC marion29181

      Posted

      Hi Marion, I didn't realize that you have hypothyroidism, I have seen on some of the CFS/FM web-sites that this can lead to FM as well. I would talk to the people at the web-site. They seem to have had some good success with CFS/FM, and they may have some other things to suggest. Have you got your hyptothyroidism sorted out? I think you will probably need to do this as well. Nobody seems to know why it is so common in women. I would certainly welcome any one else's thoughts on this. It certainly is curious.
    • marion29181
      marion29181 MadgeC

      Posted

      Hi again MadgeC, I've had a thyroid problem for many years now, only picked up when I paid to go privately to an Endocrinologist. My GP was less than happy about this, and they only send me for annual blood tests to monitor it. I feel I need to go back privately to the Endocrinologist, and start from scratch again, explaining all the new problems. Hopefully he might be able to see if my thyroid medication needs adjusting. Having read a lot on these Health Forum sites, so many of the symptoms seem to be similar. My own theory on my thyroid issue, is it began after a long period of continuous stress. I just think my system broke under the strain. I wonder what others think? Marion
    • MadgeC
      MadgeC marion29181

      Posted

      Hi Marion, you probably have a very common experience with the hypothyroidism. Looking at the literature and the various web-sites it appears to be something that most of them don't even agree about. The incidence is reported as anywhere between 0.5% and 20% of the population. There is also no-one who appears to be able to really state why it occurs, even the auto-immune theory has problems, as you don't know if the reason for this is deficiency in riboflavin. You also have to factor in riboflavin (vitamin B2) deficiency, which causes similar symptoms. With the cholesterol scare and people going off eggs and dairy, riboflavin deficiency is now becoming very common. One thing that appears to be clear is that vitamin B12 deficiency is very common in women with hypothyroidism (over 40%). Similarly iron deficiency is also common.(also over 40%). Now this becomes even more complex if one considers that the normal range of values will contain people with sub-clinical hypothyroidism. Also you have to treat the hypothyroidism in order for any B12 treatment to be effective.
  • marion29181
    marion29181 Lettie3871

    Posted

    Hi Lettie, how great to hear that you are making a difference through your work. It is terrible that the knowledge in the bulk of the medical profession is so poor when it comes to B12 deficiency. I would think to use sublingual methods in the short term wouldn't be a problem, just while you wait for the oils to be delivered. I wish your daughter well, and hope that the three patients who are being treated will improve too. Best wishes from Marion
  • chris27080
    chris27080 Lettie3871

    Posted

    Normally hydroxycobalamin converts into trans cobalamin and then into methyl cobalamin and adenosyl cobalamin. The last two being active forms. In some people with genetic variations one or other of those pathways don't work and oral forms which skip the transformation step do. I take both working by testing rather than relatively expensive gene testing.

    If she has a sufficient supply she doesn't need excess. The problem is that sufficiency can't be determined by the blood test level which is a poor indicator. Rather by patient response.  Quite why this is not understood. presumably it is related to the different forms and  rate limits on the changes or reactions. Many Drs are not up with the literature on that so there are all these patients complaining they crash before their next injection is due.

    Reasonably they can use orals.The only research shows orals as as effective as sublinguals. However there are anecdotal acccounts of higher levels with the latter if it is the mouth for an hour or two and with some forms that slower release may help. I don't know about oils I think they were expensive.

    The whole metabolism is quite complex with many steps and other factors as well as individual variations.  Other vitamins or pathways can become limiting once the B12 is available.

    Presumably she can convert so the form does not matter. Wait and see how she goes before you take extra steps. Your Dr may be flexible, mine was not but suggested orals which I had already ordered from the US, however she was impressed by the number of changes I could point to.

    The only extra comment is the relevancy of how this arose. If it was straight dietary ie vegan it should be straightforward. If it was malabsorption then there could well be underabsorption of other things as well, vitamin k for one.

    Good to hear about the medical education you are doing.

    • Lettie3871
      Lettie3871 chris27080

      Posted

      Hi Chris, im find all this so confusing. It has been established it is not diet related. More poor malabsorbtion. My daughter did not respond to sublingual cyanacobalamin and no improvement was seen despite the GP telling her to keep going with them. 6 months down the line, i had to go and refuse to leave the surgery until they would start her on injection hydroxocobalamin. This has resulted in positive improvement physically and mentally, however i do not want my daughter going back down hill when it can be prevented. iron levels were on low side 29 but GP stated this was ok. Im not so sure as it is on low side of normal. I just want to know cause of deficiency so we can establish a treatment that will keep her healthy. It is all so frustrating and confusing!!
  • chris27080
    chris27080 Lettie3871

    Posted

    I have a reply which has been waiting for moderation for what shows as 20 hours for the offence of mentioning a reliable source.

    The brief version is that as yet you don't know what dosage regime is required. It may well be more often than 3 months assessed by patient response not blood level.

    Some oral sprays include citric acid. Some sublinquals include a mild acid. However the instructions say keep it in your mouth for 20 seconds. That is because saliva is a step in absorption. However you could take it with food.

    The absorption of the oils have not been established. One maker refers to up to 80% in animal studies. The contents per dose are not shown however others report around 750 mcg and up for compounds. At even say 33% absorption that is a daily dose that exceeds a normal monthly injection of 1mg of which 20% is absorbed or a daily oral dose of 1000mcg of which .5-4% is absorbed ie 25 x the typical 1% oral rate. Personally I would prefer to see the absorption published in a peer review journal before using something that might be 25 or 50 x the dose of established sources or not.

    The cost of $50 us plus 15.50 freight for a month is way above what orals are available for.

    • MadgeC
      MadgeC chris27080

      Posted

      Chris, looks like you are convinced about sub-linguals, but you have quite a few things wrong. Firstly, the maximum absorption fo sublinguals is closer to 1%, not 5%. Second the oils have now been shown to be effective at treating chronic fatigue syndrome, which the sub-linguals certainly haven't. Third the cost is a lot lower than you make out. It is actually $40 (if you buy in 3s) and that is for 60 doses, so the cost is only about $0.66 per day. Hardly a problem as they work so well. I tried the sublinguals and they were an absolute waste of time and money. They had no effect on me at all.
  • chris27080
    chris27080 Lettie3871

    Posted

    Probably on this level of forum one reports generally on their experience and knowledge, rather than making citations and asking for references. Few of us are biochemists.

    Actually I may be wrong or not.  My approach is to read and listen to both people’s accounts but with a preference for published research evidence rather than some post. Even research is a process rather than something which is accepted uncritically.

    As to the level of absorption orally or sublingually the research does not show a difference. Commonly a 1% level is cited. However there may be a wider variation. That would be no surprise. My source is a paper by Stabler  in the NEJM 2013. A free version is available as a pdf under family medicine at one of the universities. She cites a paper by Berlin H, Berlin R, and Brante G titled Oral treatment of pernicious anaemia …. without intrinsic factor. This involved radioactive assay of absorption and was published in a reputable journal in 1968. I have not gone to the source direct but she seems to know her stuff and that group did further research comparing oral and intramuscular in 1978. I noted it because it was different, and the technique likely more accurate. One is not allowed to cite links here.

    I have read much of the writings on ME or chronic fatigue. Many report significant improvement on high even mega doses of B12 amongst many other things. Most would I think stop short of saying B12 was a cure, rather a work in progress with many individual variations and complications not the least of which are various genetic variations.

    The third thing? Oh you get a discount on 3 bottles. That’s 6 months supply for you but others report using more.

    Oh by the way I don’t have a commitment to sublingual or anything else. If it works and is cost effective for you that’s fine. Oral will work for most though some may require different types. Most cases of B12 deficiency are relatively straightforward with dosage being a common concern. Some have more complex issues and need to work out their individual responses and needs.The original point was one needs to do that before taking extras

    • roy193327
      roy193327 chris27080

      Posted

      Hi Chris, I don't normally comment on these things, but we have done extensive work on looking at uptake of B12 with different doses in small animals, and yes it is true that as the dose that you give increases there is more material that gets into the circulation and the body. This tends to peak at about 1%. This is what we would call non-specific uptake. The worry though with B12 is, that at the very high doses the amount of B12 that goes to the liver does not necessarily increase, suggesting that at relatively low doses you actually saturate the uptake system. This is perhaps what you would expect as there is only a small amount of free TCII available for the B12 to bind to. The next big worry is that the amount that reaches the circulation is rapidly lost. So the high dose oral delivery won't effectively prime up the system, and more importantly very, very little goes to the brain. From what I can understand of the new transdermal system and the papers that I have read on it, it persists for hours and hours and so has time to reach TCII that is not saturated. This is presumably why many people with CFS have reported that it has worked for them, whilst the different orals have not. Further, as far as I can see the sublinguals only come as methyl cobalamin, but you would need adenosyl as well. Several literature articles have shown that the conversion of methyl to adenosyl is very poor, and in fact this appears to be what people have found.
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