Confused about oral meds and sub cut injections

[lesbud1]

I have been reading vit b12 def in clinical practice by Dr Chandy and it says that in Sweden they mostly treat b12d with oral treatment. Does anyone know what and if these are effective. I am obviously aware that PA can not absorb from the gut and I am assuming some of these patients will have PA. The book also says that sub cut injection may not get into the blood but stays trapped in the fatty layer? Anyone got any more info on these points please?

[fbirder]

I've not read the book, but if it's anything like the web site it will be packed full of misinformation.

From the BMJ

Treatment with oral B12 has a long tradition in Sweden, since the mid

1960s. It works well and is suitable for almost 90 percent of all patients with B12 deficiency.

I would guess that the 10% are those people with PA.

If the B12 from a subcutaneous injection stays in the fatty layer then there are some people around here who must have purple stomachs by now.

From drugbank.ca/drugs/DB00115

Vitamin B12 is quickly absorbed from intramuscular (IM) and subcutaneous (SC) sites of injection; with peak plasma concentrations achieved about 1 hour after IM injection.

[lesbud1 in reply to fbirder]

Thanks once again. If they haven't diagnosed PA then what about those who have PA without IFA? Surely trialling oral could have serious neurological consequences? I am just wondering if some bright spark has decided to use the Swedish method for treating B12d?

[lesbud1 in reply to fbirder]

I wonder if you judge him a little too harshly? He seems very compassionate and has risked his career helping people with b12 def. I have no idea if all the information is correct on the website but it seems to be similar to the PAS information?

[fbirder in reply to lesbud1]

We know what is paved with good intentions.

Telling people not to inject subcutaneously could stop some people from treating themselves effectively. As good telling people that oral B12 works just as well.

[lesbud1 in reply to fbirder]

maybe I mislead you. the book says that it may not pass into the bloodstream and he is definitely not advocating oral b12 just that it is stated in the book that Sweden treat with predominantly oral tabs quoting Hvas & Nexo, 2006 Nilsson et al 2005. I was just shocked that a country would consider oral treatment. I would like to know how many people with b12d in Sweden go on to develop neurological symptoms or worse! maybe I should look up this research to get more info?

[lesbud1 in reply to lesbud1]

emsp.org/wp-content/uploads...

I looked up that piece of research and also the graphs above. Hvas study says that in 2000 vit b12 treatment in the UAS is usually injections daily 1000ug cyanocobalamin for first week followed by weekly inj for next month and thereafter monthly. Denmark recom inject 1000ug cyano weekly for 4 weeks and there after 3 monthly. It then goes on to say that oral vit b12 as a route of treatment accounts for 70% of the total vit b12 def patients in Sweden. It goes o to say that effects of oral treatment in patients presenting with severe neurological manifestations has not yet been adequately addressed and until this has been doe parental vit b12 treatment is still to be recommended for such patients. The data is 2000 so not that new but I notice in the graphs above that Sweden has high rates of MS along with other countries but I find that interesting.

[Lurcher-lady in reply to lesbud1]

There are many different types and strengths of oral B12 and different doses. Maybe Sweden use the more expensive sublingual oral supplements.

[Foggyme Administrator in reply to lesbud1]

Lesbud1. I have to say, I am not filled with confidence by a website that advises those who are self-injecting B12 that a multi-dose bottle of methylcobalamin is enough to last for 2 to 2.5 years.

Manufactures instructions for ALL multi-dose bottles of any vitamin or drug state that these should be discarded 28 days after the first injection has been withdrawn. In short, issues to do with potential contamination and lack of guarantee that the products are safe (or indeed have efficacy) after this date.

In addition, claims to have cured multiple sclerosis (and the hypothesis that this does not exist)...hmm 🤔. Whilst it is possible that some with B12 deficiency are misdiagnosed with MS, and then recover once B12 deficiency is recognised and treated...think it's a bit of a stretch to say that MS has been 'cured'...and that it may not exist at all!

Apologies...but you did ask 😉

[lesbud1 in reply to Foggyme]

sorry was not aware that this had been suggested or claimed. only halfway through the book. we just all want to be well and it seems so easy, cheap and available if doctors would just read the research. I sometimes look at the GP and think you are human too I wonder what you would do if you became b12 def and had horrendous symptoms?

[Foggyme Administrator in reply to lesbud1]

No idea if this advice is given in the book. That advice is currently posted on the B12d.org website lesbud1.

[ACritical in reply to fbirder]

I haven’t got a purple tummy!😅

[lesbud1 in reply to ACritical]

so pleased for you. if you had if could have saved you a fortune in tattoo fees.

[bookish in reply to fbirder]

I'd only just found Dr Chandy's website and the treatment protocol/symptoms list which seemed helpful (to a very new reader). Please can you recommend a decent book or sites that I can rely on, if any? Much appreciated.

[fbirder in reply to bookish]

Of the three books I have I would only recommend one - What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency by Martyn Hooper

amazon.co.uk/gp/product/178...

[bookish in reply to fbirder]

Thank you very much, I shall get a copy of the book.

[Ritchie1268]

My Dad who is retired has spent a long time now sleeping all night, getting up for a coffee then going back to bed & sleeping all day 3-4 times per month.

After I was diagnosed last year with PA I kept telling him to go to Dr's & get his B12 & Folate checked.

After constant nagging from my mum 😁 he gave in & was told he had a B12 & Folate deficiency.

He was given B12 tablets & Folic acid for 3 months & improved.

However he has now reverted back to sleeping how he was before but he is very stubborn & refuses to go back to the Dr's 🙄.

[ACritical]

😱 I inject subcutaneously and feel I get the benefit of that after a day or 2. Don’t tell me it’s a placebo effect. Now I am told this I will let you know in due course if that affects me one way or another.

[Foggyme Administrator in reply to ACritical]

ACritical...just to let you know...should be no issues with Subcutaneous injections...as per fbirder 's link.

Many here use that injection method to good effect...as do diabetics, who all inject subcutaneously.

👍

[ACritical in reply to Foggyme]

Yes, I know. I do feel the effects, I am quite a logical thinker, science has always fascinated me. I don’t accept things until I understand, reading 📖/ research is my thing.

[Foggyme Administrator in reply to ACritical]

Hurrah...good for you ACritical 👏👏

[ACritical in reply to Foggyme]

Thank you. I do appreciate your input on this site, has helped a lot to find out more.

[lesbud1 in reply to ACritical]

no I would not dream of telling anyone it is a placebo effect. I don't know anyone yet who has x ray vision, even if some GPs talk as though they have. the book says it may not pass into the blood stream but fbirder has sent me info that says you can administer IM or SC.

[Gambit62 Administrator]

a) this is a literature review of studies related to use of oral B12 to treat B12 deficiency reviewing it in respect to the underlying cause of the B12 deficiency.

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

Table 3 in section 3.3 looks specifically at studies involving patients with PA. This actually showed that serum B12 levels could be normalised in significant numbers of patients involved in the study. Passive absorption doesn't appear to be something that does not apply to patients with PA because it is involving a completely different mechanism from that involved in PA. The discussion in section 3.3 also mentions studies that didn't show any adverse neurological effects as a result of using oral B12

However the studies also show that there are significant numbers of people, in all classes that don't respond to high dose oral treatment - and the numbers are pretty consistent across all of the groups.

It is also clear that because the amounts absorbed through passive absorption in the gut are quite low that oral isn't going to result in a swift rise in serum B12 levels that would be needed in someone who is suffering from serious problems, in particular neurological symptoms.

b) I am not aware of any studies that have shown that B12 injected subcutaneously does not work. SQ is used in a large number of countries as a delivery method - it is even mentioned specifically as a delivery method in the patient information leaflets in Germany.

SQ may be a slower release than IM (which will again be slower than IV) in terms of time it takes for the B12 to get into the blood but slower release isn't necessarily a disadvantage.

[lesbud1 in reply to Gambit62]

thanks for all the information you supply.

[lesbud1 in reply to Gambit62]

I have read through the paper. It seems that about 20% don't seem to get results from oral but the paper says in its conclusion that pts with b12 def who are symptomatic have severe neurological deficits or have critically low blood levels pf b12 should be treated with IM b12 replacement. This is to ensure rapid replenishment of body stores to prevent irreversible consequences of the cobalamin def. Also it does state that To date, the oral b12 treatment regime is not yet formally approved. What worries me is it goes on to say subsequently, patients may be able to convert to oral replacement with close monitoring.

Thanks for all you information you supply. I think this is probably why my surgery is attempting to put us on oral. I will see what comes back from the gastro consultant and if needed take this research into her. I have also requested my notes from the hospital and blood tests to see exactly what was documented. thanks again.

[Foggyme Administrator in reply to lesbud1]

Hi lesbud1. So hmm...outside of discussion about the efficacy (or not) of oral supplementation, here's some information that may (or may not) help you with your GP.

In the forum we are seeing increasing reports of GP's attempting to introduce oral supplements in the place of B12 injections. Some appear to be introducing their own local 'policies' which veer away from (and ignore) current prescribing guidelines for those with cobalamin deficiencies.

As it currently stands, the only oral B12 supplements licensed for use in the U.K. are cyanocobalamin 50mcg tablets: these are only recommended for those with dietary induced B12 deficiency (not for those with absorption issues, including those caused by PA).

It appears that 1000mcg oral supplements are now being made available to GP practices in some areas (though it’s not clear if GP's are offering these or simply - mistakenly - offering the low dose 50mcg supplement).

However (and you are right about this), high dose oral supplements have not been approved for use in the U.K. and are not currently recommended in any of the U.K. treatment guidelines (BSH, BMJ, NICE etc). So...this appears to be 'back-door' prescribing (for want of a better way of putting it - and my words only) predicated on economy and cost.

Where this has happened to other people, the PAS have lobbied GP's concerned and have had success in getting B12 injections re-instated.

Here's more information that may help with your GP:

b12researchgroup.wordpress.... (Serious Caution Note about the use of Oral and Sublingual B12 Supplements)

Whether treatment guidelines will change in the future to incorporate potential treatment with high dose oral supplements (with initial treatment via B12 injections to get levels up quickly) - who knows?

As it stands...treating with oral supplements for anything other than dietary

deficiencies is not support by U.K. treatment guidelines.

Good luck with your GP. Be interested to hear how you get on 👍

[lesbud1 in reply to Foggyme]

thanking you so much, all of you, for taking the time to supply all this info and support. If I knew oral meds worked I would have no problem taking them and leaving my GP surgery alone forever. We just want to get our health back. You know when you say this it doesn't sound too much to ask given that the treatment is cheap, available and has proved no serious side effects!

[Foggyme Administrator in reply to lesbud1]

No problem lesbud1.

Yay to all getting back to functional living 👍

[Gambit62 Administrator in reply to Foggyme]

I believe there is supposed to be a large scale trial of oral B12 going on at the moment in the UK but if it is a trial then people should be invited to take part and be given the opportunity to say that they don't want to take part. Failing to do this is contrary to medical ethics ... and the fact that growing numbers of patients seemed to be rail-roaded into oral treatment is very worrying.

I don't think the PAS is against patients being able to chose oral B12 if it suits them (there have been large scale studies in Canada that found that significant numbers of patients did prefer oral B12).

However, the risk of adopting oral as a one size fits all is enormous so I wouldn't support adopting high dose oral only for that reason and I'm sure that the PAS will fight this tooth-and-nail.

There is actually nothing to stop you trialing oral for yourself anyway to see if it helps you as a supplement, but preferably whilst continuing with injections.

[Foggyme Administrator in reply to Gambit62]

I'm a bit suspicious about this so called trial Gambit. I think it's a 'trial' cooked up at local CCG / GP level rather than a proper clinical trial governed by appropriate clinical trial guidelines and codes of ethics....which, as you say, should involve inviting participants to join...and appropriate testing and assessments under controlled clinical conditions. Don’t think that's happening...but I could be wrong 🤷‍♀️

So...I think this is a cost control exercise on the part of CCG's - rolled out to GP's willy nilly...with patients being rail-road (as you say)...doesn't sound like any clinical trial I've ever heard of!

Agree about the potential risk attached to treatment with oral supplements alone. Worrying. And patient choice must come into it...but likely won't. Hmm.

[lesbud1 in reply to Gambit62]

I don't wish to have oral. I would just like to have the most effective treatment. I usually get the injection every 8 weeks due to the neurological problems and then I was topping up with sublingual as the GP would not permit me to have more. I am going to buy injections privately and plan to try monthly injections. I would prefer though to get the injections from the NHS and be in partnership with my GP for my good health but that doesn't look like that will happen.

[Gambit62 Administrator in reply to lesbud1]

unfortunately with you on the likelihood of being able to work with a GP

[lesbud1 in reply to Gambit62]

sorry didn't quite understand your reply.

[Gambit62 Administrator in reply to lesbud1]

I also don't think it is likely that you will get your GP to work with you

[lesbud1 in reply to Gambit62]

yep me neither.

[victoria1000]

Vitamin B12

We have never given the right amount in Vitamin B12 to be obsorbed. We needs 1000ugs and not the 10ugs that was normally given.

[fbirder in reply to victoria1000]

1000 mcg is the normal dose for PA.