Is it worth fighting my doc for Methylcobalamin?

Hi, I'm currently negotiating with my doctor to have B12 injections for Trigeminal Neuralgia. I've read that Methylcobalamin is the preferred B12 of choice if you are treating a neurological disorder, as I am, but here in the UK they seem to inject Hydroxocobalamin - end of discussion.

Does anyone know if the Methyl version is available here on the NHS, or if it is even desirable that I use it? Anyone used it for a neurological complaint, and is it worth it (or even possible) to fight my doctor for it? Any insights would be useful - thanks!

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  • Hi Chancery,

    Methylcobalamin is not licensed in UK , so not available on HNS. No way can you insist an NHS GP to rescribe it for you. Only hydroxocobalamin is available on NHS. In theory your body will convert that to methylcobalamin if all is working well, so it may well be worth a try, you have nothing to lose by trying!

    Kind regards,

    Masrre.

  • I suspected that, Marre, thanks. It's a big enough fight trying to get the treatment at all - I don't need the extra grief - I shall give it a pass and supplement with it myself, if I feel I need it. Thanks again.

  • Dear Chancery,

    You cannot get Methyl cobalamin prescribed in the U.K. It is not licensed in U.K. If you are not suffering from P.A. you might be able to absorb sub-lingual lozenges of Methylcobalamin(Amazon) I have just started to use DRIED Methylcobamalin obtained from Oxford Biosciences((Google them) This is how they get round the restrictions, I suppose. Then you will need saline, only obtainable in the U.K. on prescription. Get this online from Germany (Bofeld Apotheke) Swabs, needles and syringes are obtainable in UK(amazon or Medicare ithink) I inject subcutaneously in my thigh(google for instructions) I hope that this has helped you. The very best of luck

  • Hi Wedgewood, thanks for the info. One point though, can't you use the saline that's available for contact lens use? It's sterile, I believe, so any reason why that's not acceptable? You can get that OTC here.

  • I honestly don't know Chancery. I noticed the saline for contact lenses when I was trying to source saline, but I suppose I was just too nervous about it to use it. By the way,saline for injection has to be at 0,9% concentration. I have no idea what the saline for contact lenses is. I do know that is not good to have it stronger. It might even be dangerous, so do take care please.

  • Ah, good to know. I'd hate to poison myself with salt! But I'm running before I can walk here - still got to get over the hurdle of getting the doc to prescribe ANY sort of B12!

  • As a technical point, doctors in the UK can most certainly prescribe many, many products which are not licensed medicines. Including unlicensed medicines. Indeed, the so-called blacklist of things that absolutely cannot prescribe is very short.

    You might well be unable to find a doctor who will prescribe for you, or things like funding and policies stop them doing so on the NHS.

    Rod

  • You will find that a private Ecological doctor will prescribe Methylcobamalin, This is all at great expense---doctors consultation fee,and getting the Methylcobalamin from the USA,transporting the same ,refridgerated.

  • Oh, that won't be happening any time soon, Wedgwood - more's the pity. I can barely afford to buy the sublingual drops I got OTC at Holland & Barrett's! I'm afraid it's NHS or nothing for me.

  • I didn't realise that, Rod, very interesting. I can just see my doc's face if I asked him to prescribe something that wasn't in his little book though. As it was he freaked out when I brought up the idea of me taking B12 at all. He hates "colluding" with non-mainstream medicine, poor man.

  • Over on the Thyroid UK group we see lots of people trying to persuade their GPs (or endocrinologists) to prescribe the unlicensed desiccated thyroid products. A few are lucky.

    I quote from an email from NHS Prescription Services, NHS Business Services Authority:

    As I am sure you are aware in England a 'black' list system is essentially in place. Therefore subject to the prescriber having the appropriate prescribing rights, any food, drug, toiletry or cosmetic may be prescribed on an NHS prescription unless the product is listed in Part XVIIIA of the Drug Tariff (known as the 'black list'). For example, whisky is not on the black list, so a prescription for this item could be passed for payment to the NHSBSA where I work!! The prescriber may however be questioned (formerly by their PCT and now via their NHS England local area team) about the appropriateness of prescribing this item at NHS expense. Now as well as this being completely true, the reason why I use the example of whisky is because as can now be appreciated, the complexity in maintaining an accurate and up-to-date NHS dm+d is huge.

    An associated issue is thyroid patients wanting liothyronine. Doctors accept that it is in BNF and licensed but refuse to prescribe for what they perceive as non-standard, even "off-label" use, for "simple" hypothyroidism.

    Rod

  • That's a real eye-opener, Rod, because on just the previous visit with my doc I asked him for Colgate Duraphat mouthwash. It's a high fluoride mouthwash which I use because I can only eat on one side of my mouth and I fret about the teeth on the TN side being damaged because they don't get natural cleaning from the fibres in food. I asked if he could prescribe it and told him my dentist could but I wasn't sure if he could and he immediately reached for his book, muttering that he didn't think he could. He then prescribed me the wrong bloody thing, which I didn't realise till I picked the prescription up, but as it turned out it was an even higher fluoride toothpaste so I was at least a little mollified, since it does the job. But he genuinely believes if 'it ain't in the book, you ain't getting it'. It does make you wonder if some GPS actually KNOW they can prescribe off-course, as it were.

  • You can find the actual XVIIIA black list from here:

    ppa.org.uk/ppa/edt_intro.htm

    Rod

  • Ta! Although I admit I am curiously afraid to look. I can't imagine what the hell they'd ban, given some of the drugs they give us to take...

  • Don't worry too much. Hydrocoxocobalam by injection converts to methyl in your system. Methylcobalamin by tablet form is best.

  • I found methyl in sublingual tablet form to be totally useless.

    There is a lot of talk about methyl being the "best" form of B12 to take but has anyone ever seen any meaningful research to prove the point or is it all based on an assumption that methyl is best because it is one of the active forms that the body actually uses and therefore requires no processing in the body unlike hydroxo or cyano which have to be converted?

    There are people for whom even injected methyl doesn't work - there was a thread on this yesterday by someone who had changed from cyano to methyl only to find that symptoms worsened again rather than improving.

    I was actually dismayed to read a comment from Dr Chandy a few days ago recommending that the NHS treatment should change from hydroxo to methyl. Where would that leave those who do not respond to methyl?

  • I agree Engels, its scary how often methylcobalamin does not seem to suit people with PA/B12 def. I can only imagine its because its only one of the 2 active B12 forms the body uses and as such many need to convert to both, or even possibly not specifically methylcobalamin. Its such a mine field, then methylcobalamin not being licenced means there is no control and what is sold may not be what it says on the bottle, it degrades easy, does not keep well and converts quickly to hydroxocobalamin. So methyl is only needed by those who for some reason (genetics?) can not convert to methylcobalamin it seems to me, for the rest hydroxocobalamin and or cyanocobalamin seems to be fine as far as I understand it. I've used methyl lozenges and they did nothing for me, nor raise my then low serum B12, if that was because there was nothing in them I will never know!

    But there is no way I'd want to inject more often than I do and methyl seems to be needed far more often than hydroxo/ cyano it seems. Freedom of choice is what we all are after I expect..

  • Yeah, I saw the thread, Engels. The only form I've taken is the Cyano version in sublingual OTC drops. And I've only taken it for 4 days so I don't know my ar*e from my elbow yet! That's why it's great to come and poll opinion here.

  • I tried Methylcobalamin as sub-lingual lozenges, same as skin patches and nose spray. Absolutely no effect on me at all. Only Hydroxocobalamin injections got rid of most of my symptoms. I'm trying Methylcobamalin injections because I read about them in Martyn Hoopers'book--- he uses them. I hope they helpmy numb feet> I will report back if they do. It's strange how different everyone is. It is oe of the complexities of the condition of Pernicious Anaemia.

  • I do hope the methyl injections work for you.

  • That's interesting that you are using them for a neurological complaint, Wedgewood - that was my thinking. Please do let us know if they work for you.

  • I will, but I have to be patient.

  • Yes, I read that it converts it, Shaws. It's just that various 'authorities' keep telling me that the Methyl version is superior. I just wanted to give this the best shot of working it had. I shall just relax with the hydro version and trust that my body knows what it's doing and will manage.

  • Prepare yourself for a battle over injection frequency if your doctor agrees to a trial. Every other day for as long as possible is what you want.

  • Yeah, Engels, that's a tough one. The guidelines for neurological damage say that you should get them "until there is no further signs of improvement" but my neurological damage is not standard anaemia damage. I've got TN, which is not yet universally acknowledged as a B12 problem, although cracks are showing. More importantly, I have a grey zone B12, at 384, which he considers far too high to be abnormal, so I'm getting this on sufferance - if I get it at all, which at the moment feels unlikely. Him permitting the indulgence of indefinite injections, when we have nothing measurable, other than my word for it? Can't see it. Thank God for OTC B12 - though how the hell I am going to pay for it God knows.

  • Oh well Ill put this here as well, as it explains a bit about the difference in B12 products, and how with only methylcobalamin one may need to add adenosylcobalamin, ( I believe DR R used to add hydroxocobalamin to methyl for that reason) see:

    Treatment of vitamin B12 deficiency-Methylcobalamine? Cyancobalamine? Hydroxocobalamin?-clearing the confusion.

    ncbi.nlm.nih.gov/pubmed/251...

    Abstract

    Vitamin B12 (cyancobalamin, Cbl) has two active co-enzyme forms, methylcobalamin (MeCbl) and adenosylcobalamin (AdCbl). There has been a paradigm shift in the treatment of vitamin B12 deficiency such that MeCbl is being extensively used and promoted. This is despite the fact that both MeCbl and AdCbl are essential and have distinct metabolic fates and functions. MeCbl is primarily involved along with folate in hematopiesis and development of the brain during childhood. Whereas deficiency of AdCbl disturbs the carbohydrate, fat and amino-acid metabolism, and hence interferes with the formation of myelin. Thereby, it is important to treat vitamin B12 deficiency with a combination of MeCbl and AdCbl or hydroxocobalamin or Cbl. Regarding the route, it has been proved that the oral route is comparable to the intramuscular route for rectifying vitamin B12 deficiency.European Journal of Clinical Nutrition advance online publication, 13 August 2014; doi:10.1038/ejcn.2014.165.

  • I'd like to see the proof that oral is as good as intramuscular.

    This article supports something I was reading recently which stated that is actually adenosyl rather than methyl which is required to repair neurological damage. So why is adenosyl almost universally ignored?

  • Yes that is what I read in it, re:"deficiency of AdCbl disturbs the carbohydrate, fat and amino-acid metabolism, and hence interferes with the formation of myelin." If its true I would not know. I do not know why its so ignored. Also read in some where that Adeno is the form of B12 stored in the liver....The oral route seems to be used in several countries (Canada, some Scandinavian countries), I just wonder if again it suits some but not others, again depending on what has gone wrong where in a person's system. I do know I have a disturbed fat and amino-acid metabolism, so that may explain for me why the methyl lozenges did nothing, but who knows..

  • That's odd, Marre, I've just been researching if there was any connection between gallstones and B12 deficiency tonight. I couldn't find anything remotely professional, only crank sites, so I had to conclude there was nothing there, but gallstones are a cholesterol problem which is fat related, albeit indirectly, and it's odd that the Adeno disturbs fat metabolism. I had severe gallbladder disease just before I developed TN so that's why I was wondering if there was any connection.

    Can I ask how you know you have a disturbed fat and amino acid metabolism?

  • I've had a vitamin profile and an amino-acid-plasma profile done privately once, at gdx.net/uk/. I have bile salt malabsorption, diagnosed last year by gastro, plus an abnormal section of gut, smooth, a cause for a lot of vitamin def.

    Loads on gallstones here, see:

    pernicious-anaemia-society....

    If you put B12 gallbladder into the search option at:

    ncbi.nlm.nih.gov/pubmed/?te...

    You will get a list of related research, such as:

    ncbi.nlm.nih.gov/pubmed/117...

    The frequency of gallbladder stones in patients with pernicious anemia.

    Aydogdu I, Sari R, Ulu R, Sevinc A.

    Department of Hematology, Inonu University, School of Medicine, Turgut Ozal Medical Center, TR-44069, Malatya, Turkey. drsari@hotmail.com

    BACKGROUND: Ineffective erythropoiesis and intramedullary hemolysis are the two important results of pernicious anemia. Hemolysis is one of the risk factors in the formation of gallbladder stones. PATIENTS AND METHODS: The frequency of gallstones was searched in 59 patients with pernicious anemia and in 54 healthy subjects. RESULTS: Nineteen (32.2%) patients in the pernicious anemia group and three (5.5%) patients in the control group were detected to have gallstones. Pernicious anemia patients with and without gallbladder stones were also compared for mean corpuscular volume, hemoglobin, unconjugated bilirubin, lactic dehydrogenase, and vitamin B12 levels but no statistically significant difference was encountered. CONCLUSION: Apart from other risk factors, pernicious anemia itself increases the frequency of gallbladder stones. Should patients with pernicious anemia develop upper-abdominal pain or other symptoms referable to biliary tract disease, a high index of suspicion for gallstone-related disease should be maintained.

    And full free text that explains obout the R binder etc:

    ncbi.nlm.nih.gov/pmc/articl...

    Immunohistochemical localisation of vitamin B12 R-binder in the human digestive tract.

    Abstract

    The distribution of vitamin B12 R-binder in the human digestive tract was studied using an indirect immunoperoxidase technique. Positive staining for R-binder was found in the mucous cells and ductal epithelial cells of the salivary glands and the oesophageal glands. In normal gastric mucosa, no positive staining for R-binder was found, but in the area with intestinal metaplasia, the columnar epithelial cells and goblet cells showed positive staining. Epithelial cells of the gallbladder, intrahepatic bile ducts and pancreatic ducts were also positive for R-binder. In the small intestine and colon, R-binder was found in the columnar epithelial cells and goblet cells. The measurement of unsaturated vitamin B12 binding capacity and cobalamin content in the extracts from intestinal mucosa also indicated the presence of R-binder in the intestinal mucosa.

    More here:

    pernicious-anaemia-society....

    Kind regards,

    Marre.

  • Well, Marre, I WANT to thank you for that meaty answer but I feel so conflicted about that information that it sticks in my craw. No, seriously, I do thank you, but what a bombshell, I genuinely didn't expect any correlation and had already dismissed it. IS it possible that I actually have anaemia and the tests have missed it? Could I have it with a zero F1 antibody test result and a B12 reading of 384 - is that even feasible? Could it be a false negative antibody result combined with a grey zone B12?

    I really don't know what to make of this. Because I've always felt my gallstones brought on this TN I have. I thought it was because I was on proton pump inhibitors (wrong diagnosis) for quite a while, then on a fat-free, meat-free diet for over a year and a half that I might have low B12 which created the TN. But what if I actually DO have f1 antibodies and it just missed them? Could I have PA and have a B12 reading of 384?

    What are your thoughts, as someone who has seen various PA patients work through this - is it even remotely likely?

  • Must confess after yesterdays reading I got terribly tired from it all. Its just so much is still unknown about the uptake and further paths of B12 metabolism.

    If you have PA I can not say, the IF test is notoriously unreliable, but you have got a lot of reasons to have a B12 def with your medication, medical history and diet. A serum B12 reading can be misleading as you know, so idealy other tests such as active B12, MMA etc would also be done. Its very difficult as some people are deficient in active B12 with your serum B12 reading, others are not. I am very happy if I get your serum B12 reading with my once every 2 weeks B12 jab, so its difficult for me to judge!

    You will see there are other reasons for a serum B12 assay not to be reliable, see:

    active-b12.com/research

    degruyter.com/view/j/cclm.2...

    But in your case its more that B12 may help with pain, that is what I thought was the initial reason for your post re: to have B12 injections for Trigeminal Neuralgia.

    I would not know but its worth trying as B12 is in principle harmless, if it helps then that just would be a win situation for you!

    Kind regards,

    Marre.

  • I sympathise completely with your tiredness. Because Trigeminal Neuralgia is 'incurable' it makes research into the subject very difficult sometimes - the 'what's the point?' syndrome. Add onto this the exhaustion and fogginess the tablets cause and it's like pushing a boulder uphill. From what I've seen of PA patients, in the short time I've been on here, I've noticed that tiredness is their biggest problem, so you really do have my sympathy.

    It's because I'm missing those obvious things that made me dismiss the notion I actually had PA. Although with these meds it would be impossible to tell how tired you actually were! When my doctor said 'well, you definitely don't have anaemia' I cheerfully agreed and said 'I've never thought I had anaemia' and went on to explain I thought I just had deficiency, but yesterday I did begin to wonder, hence me asking you. I thought it would be truly ironic if I had joined the doctor in just dismissing it, especially after researching how easy it is to have it with normal results. I'm still uncertain now.

    However, the good news. The doctor called today and said I could have the injections, and he agreed to aggressive treatment with shot loading - so, RESULT. I won him over with my letter & dossier. I owe a good part of that to your tips for research, so thank you. And thanks to everyone else who pointed me in the right direction, if any of you are reading this.

    After meeting four people on here who all had TN and actually 'cured' it after getting B12 shots (they could be in remission, of course, but let's hope they're right) then I am hopeful for something good. You're right, I did start out just looking for better pain control, but let's be honest, at the back of my mind I'm hoping to reverse the condition. However, I'm also conflicted with winning round one in the fight for B12 treatment because I'm dreading the despair I'll fall into if it fails - but if you don't try...

    No doubt I'll be back, many times, looking for more education, but thanks again - you've been ace.

  • Hey that is such good news!!

    I'm just due my jab and it goes very quickly from fine to tired, not understanding my own posts and not being able to concentrate or see what I am doing.

    Yes I can understand that you are hoping and afraid of disappointment, but at least you can try it, fingers crossed it does for you what we all hope for you!

    Kind regards,

    Marre.

  • These look very hopeful!

    See:

    [Clinical observation on acupoint injection of VitB12 for treatment of trigeminal neuralgia].

    ncbi.nlm.nih.gov/pubmed/179...

    Abstract

    OBJECTIVE:

    To probe a better method for treatment of trigeminal neuralgia. Methods One hundred and four cases of trigeminal neuralgia were randomly divided into a treatment group (n=57) and a control group (n=47). The treatment group were treated witb acupoint injection of 2000 microg of VitB12, with Xiaguan (ST 7) selected as main point, and the control group witb oral administration of Carbamazepine. The therapeutic effect were analyzed after 3 tberapeutic courses.

    RESULTS:

    Tbe cured and markedly effective rate and the effective rate were 82.5% and 98.2% in the treatment group, and 57.4% and 8O.9% in the control group, with a very significant difference between the two groups (P < 0.01). After treatment, there was a very significant difference in the cumulative score of pain between the two groups (P < 0.01).

    CONCLUSION:

    Acupoint injection of VitB12 has a better therapeutic effect than that of oral administration of Carbamazepine.

    -----------------------------------------------------------

    Vitamin-B12-Behandlung in der Neurologie - vornehmlich bei Schmerzzuständen

    Vitamin B12 Treatment in Neurology With Special Reference to Painful Conditions

    thieme-connect.com/DOI/DOI?...

    Summary

    33 patients with painful affections were treated with high doses of vitamin B12. The results were not uniform: trigeminus neuralgias and pains in connection with shingles were temporarily relieved, whilst the pains in diseases of the spine, phantom limb pains and causalgias were permanently improved, and in some cases suppressed. The most spectacular successes were obtained in tabetic pains. As a result of these observation the treatment of tabetic crises and lancinating pains with vitamin B12 is strongly recommended.

  • They do, don't they? Thanks for finding them for me. It's a shame the Chinese one isn't there in full as I'd have liked to read that one. Acupoint is apparently a method of combining injection with acupuncture, or so Google tells me. I can't begin to imagine quite how you'd do that. Unfortunately I can't imagine the NHS taking it up any time soon either, but I can only hope it's the injecting part that matters! Spectacular results though. That's cheering.

    The German one is a bit more of a downer because their results were only temporary for TN, but I see limb pain was cured. That's maybe why B12 consistently manages to repair PA damage, if it's caught in time, but a lot of TN sufferers only get pain relief, not a cure. Ah well, even if I only get that, it will still be a great achievement. If I could lower the level of anti-convulsants I take, my quality of life would be greatly improved, so I'm not going to complain.

    I have a theory actually (I ALWAYS have a theory!) that TN might be a more difficult neurological cure because of the way the myelin sheath is being damaged. In PA the sheath is literally just decaying due to lack of maintenance. That's happening in TN too, but the difference is in the vascular compression part. Because a vein or artery is beating against the trigeminal nerve and damages the sheath that way, it doesn't get a chance to repair itself, even with improved B12 uptake. Well, that's my theory till proved otherwise!

    Thanks again for those - all grist to the mill!

  • Just thinking, as you are on anti-convulsants drugs do you know if your serum folate is tested?

    See:

    emedicine.medscape.com/arti...

    "Anticonvulsant drugs, such as Dilantin, interfere with mucosal conjugase, hence impairing folate absorption "

    -----------------------------------------

    More to read here:

    pernicious-anaemia-society....

    Kind regards,

    Marre.

  • Yes, Marre, my folate was tested and was apparently normal - not that I'd know what that is! The doc is giving me a rota for my injections tomorrow plus a prescription. I was too gobsmacked when he said he would give me the injections that I didn't think to ask - prescription for what? I was wondering if it was for folate/folic acid (did I read they are one and the same thing?). I know I read a couple of people on here saying you need one or other of these (yet again, the same thing?) to help B12 work.

  • Probably a prescription for the B12. If that is the case then you will be expected to keep the B12 at home and take it to the surgery for each injection. That's how it works at my surgery unless you are given permission to inject at home.

  • Yes, Engels, you are spot on - It was indeed ampoules of B12 to take home. Had my first injection today - relatively painless, praise the lord.

  • Folate is the natural form found in veg etc, folic acid is the artificial form in tablets. If you want to know what normal means get copies of blood tests, always useful to have copies of blood tests, you can then see what changes with what medication etc. Folate needs B12 for conversion to an active form in the body, and B12 needs folate for conversions, many B vits need each other for conversions, see more here:

    emedicine.medscape.com/arti...

    "Within the plasma, folate is present, mostly in the 5-methyltetrahydrofolate (5-methyl THFA) form, and is loosely associated with plasma albumin in circulation. The 5-methyl THFA enters the cell via a diverse range of folate transporters with differing affinities and mechanisms (ie, adenosine triphosphate [ATP]–dependent H+ cotransporter or anion exchanger). Once inside, 5-methyl THFA may be demethylated to THFA, the active form participating in folate-dependent enzymatic reactions. Cobalamin (B-12) is required in this conversion, and in its absence, folate is "trapped" as 5-methyl THFA."

    You will read in the first page that to much folic acid (man made version) is not a good idea, so I find it useful to know my serum folate levels, as I was def one time and now make sure I'm in the middle or top end of the labs normal range.

    The prescription is as Engels said most likely for B12.

    Be aware the injections are something to get used to (they can sting), and try not to expect to much straight away!

    Hope all goes well for you,

    Kind regards,

    Marre.

  • Hi Marre, thanks for info; now I won't sound so ignorant. The first injection went well, so that's probably bad luck and all the others will be awful! I'm not expecting too much, but my doctor is! He's all excited now (he actually said that) and feels as if he is taking part in a ground-breaking experiment. He wants to see me after a week. I felt like saying to him, 'For God's sake, man, it's good but it's not THAT good."

    I'm actually a bit worried about it. He's only given me enough ampoules for two weeks and I'm worried that if he doesn't get spectacular results he will cut me off. Why the hell do I always find something to worry about?

  • Hi Marre, thanks for info; now I won't sound so ignorant. The first injection went well, so that's probably bad luck and all the others will be awful! I'm not expecting too much, but my doctor is! He's all excited now (he actually said that) and feels as if he is taking part in a ground-breaking experiment. He wants to see me after a week. I felt like saying to him, 'For God's sake, man, it's good but it's not THAT good."

    I'm actually a bit worried about it. He's only given me enough ampoules for two weeks and I'm worried that if he doesn't get spectacular results he will cut me off. Why the hell do I always find something to worry about?

  • How frequent are the injections going to be?

  • I'm getting them alternate days, i.e. 3 times a week. He's given me two weeks so far, but I think I can push to three, as recommended. In fact, I've just posted a question about this on the forum. Because Trigeminal Neuralgia (see, I didn't abbreviate it, just for you!) is an incurable condition I don't know if we are going to get measurable results in 3 weeks so I don't know what to push for after I get my loading period out of him. Any suggestions?

  • Think you just have to wait and see how it goes, before worrying. Possibly decisions can be made when you do feel an improvement and then the maintenance may be decided by when symptoms return? Its a matter of seeing what suits your body best I'm sure.

  • Ah, this is where it gets tricky, Marre, because I am on permanent anti-convulsants which I couldn't do without because the pain is too severe (and life-threatening - I can't eat when I'm in full pain mode and weight drops off me alarmingly). I can, however, monitor the improvement to the residual mouth pain that I have constantly. I am also biting the bullet and dropping one of my anti-convulsants which will make the pain more severe, plus throw withdrawal symptoms into the mix. If the B12 still handles the mouth pain through that then I might be onto a winner. Still don't know what I'll be able to get out of him though........

  • I'd not change anything now, first see what the B12 injections do for you. I'd not confuse the waters by stopping medication now that will give you unpleasant side effects etc. You then are not able to tell what is causing what is my thinking..

  • Yep, Marre, we are of a mind. Last night, preparing to lower the dose, I chickened out and took my normal dose. I just couldn't face dealing with withdrawal or, worse, the inevitable increase in pain, so all the drugs are staying in place - and let's just keep going with the injections and hope for the best.

  • I've never even HEARD of the adenosyl variety, Engels. At all. I certainly haven't seen it in any of the books. But it makes me feel better about the NHS using the Hydroxo anyway. Less to worry about.

    The British Society of Haematology guidelines say that oral is as good as injections, although I assume it isn't as fast-acting, otherwise why keep using the painful and time-consuming injections? Or it may just be a 'we've always done it this way' problem. The NHS is a dinosaur. But assuming haematologists, of all people, know what they are talking about, since they do the blood work, it's good news for sufferers because it means you are not left dangling at the whim of ignorant doctors who won't hand out injections. Maybe means you take longer to get better though if things are far advanced for you.

  • Adenosyl is also known as dibencozide.

    The only research that I have seen claiming to show that oral is effective has used a relatively small increase in blood serum level as proof. Given what we know about the inaccuracy of the blood serum test that's just a joke. When I have seen research showing serious neurological damage reversed by oral supplements then I will start to take the suggestion seriously. If anyone knows of any such research, please post a link.

  • Thanks for the clarification. And good point about the inaccuracy of the test. However, at least the Haematological Society are now admitting their tests are inefficient. It's a start. Perhaps Canada and Scandinavia (I think it was quoted?) do have the research to back it up now. Or at least the patient histories. I assume they don't have poor sufferers going down like flies because they don't inject them!

  • I really don't believe they do have any credible research to support the use of oral tablets. I can recall several Scandinavians on the old PAS forum anxiously trying to find out where they could source injectible B12 because the oral tablets weren't helping at all. Never underestimate the ignorance of the medical profession with regard to B12 deficiency.

  • Oh hell, no, I'm with you on that one. And never underestimate their ability to trot on for years doing the same old unnecessary thing either!

    I know that Scandinavian social care is the highest in the world so I'm hopeful that they wouldn't let poor anaemics fall down in the street from paralysis! But hey, a nice sound scientific study wouldn't hurt either....

  • As far as I've read they start off with injections then tablets for maintenance, apparently not suitable for aprox 1/8, see more and from sweden and canada in further links in these responses:

    bmj.com/content/340/bmj.c23...

    But its all limited research and not long enough it seems if you read this:

    ncbi.nlm.nih.gov/pubmed/160...

    "AUTHORS' CONCLUSIONS:

    The evidence derived from these limited studies suggests that 2000 mcg doses of oral vitamin B12 daily and 1000 mcg doses initially daily and thereafter weekly and then monthly may be as effective as intramuscular administration in obtaining short term haematological and neurological responses in vitamin B12 deficient patients."

  • Short term? I wonder what they mean by that - exactly? And I see you need to be taking double the dose orally to get the same effect as a shot. I think! Injections are only 1000ug, aren't they???

  • Yes, only 1-2 % is taken up orally by passive diffusion, that is why you have to take such a high dosis daily in tablet form.

  • Interesting as usual, Marre. You always come up with great stuff. You save me a hell of a lot of time in research! It looks like the hydroxo is the best option since it's 'complete' and you don't have to balance out the two types when you use Methyl. Perhaps this is what is going wrong for the people who are having poor results with it. Odd that Martyn Hooper and others aren't mentioning this. I wonder if they don't know?

  • Martyn knows, its nothing new, all on the old PAS forum! But do not forget there are many that respond very well to methylcobalamin only, for them it can change their life, its just not for every one it seems.

  • My 19 y.o. son wasn't diagnosed in time (he still isn't-but that's another story!) and as a result developed acute spinal cord degeneration, with every kind of neurological and psychiatric dysfunction in the book.

    It was disappointing to know that for neurological problems methylcobalamin is the treatment of choice, while here in Israel the health funds approve only cyanocobalamin for injection. Nevertheless I took what I could get.

    I'm pleased to say that within one week of treatment (my AMAZING GP taught me to administer the shots at home and agreed to prescribe them DAILY for as long as there were signs of improvement) I saw a HUGE improvement.

    We're into our second month of injections now down to 4 shots a week. Thank God each day my son feels a little bit better than the day before. If you can order cyanocobalamin online , I recommend that you give it a try it if all else fails.

  • Thanks, Najii, I'll keep that in mind!

  • Pleasure. Best of luck :)

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