B12 tablets better than injection! - Pernicious Anaemi...

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B12 tablets better than injection!

john159 profile image
36 Replies

Hi, after taking Hydroxocobalaminacetat 1000ug I.M. for over a year once every 12 days I decided to switch to tablets. Having been put on an anticoagulant for Afib I was suffering from pain and bruising at the injection sites.

I started taking 1000ug Methylcobalamin standard tablets each day and within a few weeks I started feeling better than previously and my concentration definitely improved. I had read a scientific paper that patients did respond just as well to 1000-2000ug tablets as injections in a recent clinical trial. In my case these were not chewable or sublingual either so I'm a bit puzzled? Any thoughts anyone?

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john159
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wedgewood profile image
wedgewood

A scientist on this forum explained to us that the trial of tablets you mentioned ( Swedish ) was improperly conducted . He went into detail why . Of course I can’t trace that post now .

Very unusual for a diagnosed Pernicious Anaemia patient to be able to benefit solely from tablets , even if they are high dosage —I’ve tried . Would be great not to have to go through the whole shenanigans of obtaining B12 ampoules from Germany to keep myself well .

Of course GPs are pushing tablets like mad so that they don’t have to shell out for nurses . You are very fortunate indeed . !

john159 profile image
john159 in reply towedgewood

Thanks for your reply. I thought I had better try as having problems with the injections. I have not been diagnosed with PA just B12 at the bottom of the normal range. Maybe I dont have PA just low B12. I will try some sublingual next see how I go. My TSH is 3.5 and my GP refused to put up my levo. I have been on the starter dose of 50mcg for 20 years so that will not help my symptoms.

lilymg profile image
lilymg in reply tojohn159

Some people cannot absorb B12 due to taking other medications that can block B12 absorption such as Metformin for Type2 Diabetes and ant-acids. I was having B12 jabs but stopped because of covid. I have been taking sublingual B12 and my levels have gone from 220 to 625. I get them from a company called 'Just Vitamins' tabs called Methylcobalamin which convert to Hydroxycobalamin when absorbed into the system. I feel good!!

Nackapan profile image
Nackapan

I'm glad they work for you.They worked for my sister but the cause of her b12 deficiency was dietary.

Same diet but absorbing less.

Age related.

I tried high dose tablets and sublingual and sprays.

In the attempt to need fewer b12 injections.

Worked with the Gp so on my notes .

I was disappointed as obviously main aim to get well.

'In my head ' aiming for monthly b1e hydroxcobalamin.

I'm dependant on regular b12 injections.

Which is fine as still making improvements .

If sold otc of course alot easier.

At present do have x NHS prescription for 2 weekly.

Approved by 2 neurologists now . 2 yesrs apart.

I woukd ask the thyroid forum about the tsh and levo

john159 profile image
john159

Thanks for your reply. I did raise the subject on Thyroid Forum and the consensus was to get back to my GP. He refused point blank like all the previous ones so I'm stuck on 50 for the forseeable future. The matter is made a lot more complicated now as having Afib it can be exacerbated by a higher thyroxine level so I think that stops me arguing anymore.

WIZARD6787 profile image
WIZARD6787

My thoughts are that your body most likely gets more B12 at the cellular level in a time frame than it can be utilized with 1000ug Methylcobalamin standard tablets every day than it did with Hydroxocobalamin 1000ug every 12 days and so you feel better. It is possible the I.M injections were passed by your body in less than 12 days and your body did not/can not store the B12.

Methylolcobalamin is one of the two known forms of cobalamin in the body. The other being adensolcobalamin. Possible your body can process Methylolcobalamin into adensolcobalamin or it may not be able to. Consider also taking adensolcobalamin or doing a trail of Hydroxnocobalamin oral or sublingual if they make it.

I have yet to find any credible information to deviate from the 1mg of Hydroxocobalamin IM every other day other than to increase the frequency or amount with regards to efficacy.

I personally currently take 5mg mixture of Methylolcobalamin and Adensolcobalamin twice a day to facilitate my travels and it works for me. I have the experience of taking 1mg IM a day of Hydroxnocobalamin to use for evaluation.

To compare oral to IM the dosage, form and frequency would need to be consistent and all studies indicate oral to be not as effective or describable.

Also consider subcutaneously.

Yervaud profile image
Yervaud in reply toWIZARD6787

Hi WIZARD6787

Can I just ask a sideways question: how much folate do you take?

john159 profile image
john159 in reply toYervaud

Thank you for that very good reply. I do not take any folate. Would you recommend it?

Yervaud profile image
Yervaud in reply tojohn159

sorry John, I thought I was asking Wizard. I’m still a Rookie in this business. But the short answer is yes. I think. But best consult Wizard and other amazing sources of knowledge.

WIZARD6787 profile image
WIZARD6787 in reply toYervaud

As long as you are ok with a sidewise answer. 😀 I have taken 1mg a day for 2 years and 4 months. I was at the low range and am now at the high range. Considering going to 1 mg every other day.

Yervaud profile image
Yervaud in reply toWIZARD6787

Ah. A full frontwards answer. Many thanks Wizard.

Gambit62 profile image
Gambit62Administrator

The mechanism for absorption of high dose B12 and intramuscular absorption is the same as that for sublinguals and the difference in absorption is actually quite minimal - though it is possible that binding with TC1 in saliva helps more B12 get to that part of the gut where passive absorption is better.

It isn't impossible for patients with PA to benefit from high dose oral as the mechanism is quite independent of the mechanism generally used for B12 absorption - but there seem to be about 30% of the population who don't seem to benefit from passive absorption at all - and that seems to apply irrespective of the cause of a B12 deficiency, The studies on this have been quite small and it would be good to have some larger scale studies but it can be quite difficult to get patients with PA to take part because the general belief has become that high dose oral won't help at all ... although actually if you go back to the early days of treatment of PA - about a hundred years ago the only treatments available were based on use of high dose oral - huge amounts of near raw liver.

I am really sorry that your GP is so blind to the possibilty that 50mg of levo is too little. Generally the right dose depends on weight so unless you are very thin it is really unlikely that 50mg is enough. I was started on 25mg which had me suicidal so I unilaterally upped it in 25mg doses until I found the right level for me. Its not ideal but it is a possibility, just do it slowly and in small increments, and if you can get a retest in between that might be helpful.

a thyroid problem can cause problems with B12 absorption in a number of ways - one is development of another auto-immune condition if the thyroid condition is auto-immune. Slow gut transit is another.

Monkharris profile image
Monkharris

Can I ask, is there a particular brand you have found to be effective? Thanks in anticipation 🙂

john159 profile image
john159 in reply toMonkharris

Hi I am taking "Healthspan" Vitamin B12 (methylcobalamin 1000ug) tablets. It says take with water which I did and seems to work. Thats why I thought I dont have PA. I will try some sublingual next. I'm assuming if I dont have PA thats why tablets work.

I have used "BetterYou 12Boost" Vitamin B12 Daily Oral Spray. You had to do 4 sprays sublingually which equates to 1200ug. I used to be wandering round the kitchen on a morning trying not to swallow. But shortly after starting I started on Injections so didnt find out if they did any good. It tasted nice I think cranberry!

FlipperTD profile image
FlipperTD

Scientist, not medic.

If the tablets work for you, then well done; it saves the holes in your skin! There's no obvious reason why they should work for some and not for others, but in some countries, oral B12 is the first line of attack for patients with PA, and injections are reserved for those who don't respond, or those who can't be trusted to take the tablets!

As for your TSH, 3.5 [assuming that's picomols/Litre] is probably normal but on the borderline of 'is the T4 replacement sufficient?' but it's a specialist area and fiddling about with your T4 dose is a specialist area.

Good luck.

john159 profile image
john159 in reply toFlipperTD

When i was first diagnosed at age 40 presenting with double carpal syndrome I was 95kgs. I was put on 50ug Levo and thats were I stayed. For my weight I should have been on over 100.

I did arbitrarily up the dose to 75ug but only had enough extra to do for 2 months. My TSH done privately dropped to 2.1. I read the American view is you continue increasing the dose till the symptoms disappear and they say at least to the bottom half of the range.

My Afib seems to have stopped any chance of upping the dose as the levo dose has to be kept to a minimum.

FlipperTD profile image
FlipperTD in reply tojohn159

Interesting. And frustrating!

newlandvale profile image
newlandvale

Rietsema WJ. 'Unexpected Recovery of Moderate Cognitive Impairment ... ' may give some explanation. There appears to be more to this b12 deficiency than is known at the moment. Sorry, don't know how to do links.

Although the medics claim Pernicious Anaemia type deficiency accounts for most cases, I suspect that will change to some extent (probably after I'm dead and gone!)

newlandvale profile image
newlandvale in reply tonewlandvale

PS not seggesting you have any dementia - just that so little is known!

Technoid profile image
Technoid in reply tonewlandvale

for readers convenience, paper is here

agsjournals.onlinelibrary.w...

newlandvale profile image
newlandvale in reply toTechnoid

That's the one! Thanks

Technoid profile image
Technoid in reply toTechnoid

B12 deficiency affects neurotransmitter production and the neurons of the brain so various brain and mental disorders are definitely on the cards. Memory issues are common but a wide range of issues can present.

Technoid profile image
Technoid in reply toTechnoid

Regards PA, it is one but not the only cause of B12 deficiency. PA/B12 deficiency can often present without anaemia (its an unfortunately chosen name for the condition). It is possible to have neurological symptoms, even severe ones, without anaemia.

bookish profile image
bookish in reply tonewlandvale

Thanks for that, very useful.

palmier profile image
palmier

Some people react differently to different products of the same type. Recently someone here found their injected methylcobalamin no longer worked for them, and it turned out the seller had covertly switched to a different manufacturer. So it's not necessarily so that tablets in general will work better for you than injections, it could be that these particular tablets work better for you than the particular injections you used before. But I'm happy you found something that works for you! :) I've tried about 10 different brands of tablets and noticed differences both between brands, types (methyl v cyano), as well as batches within the same brand.

palmier profile image
palmier

From what I've read people typically (though with individual variation to be expected) utilise around 30 % of injected hydroxy, and 1 % of strong tablets. Though I've also seen 1 to 3 % for tablets, or 0.5 %, or that tablets don't work at all. So I suppose it's a matter of trial and error. :)

EllaNore profile image
EllaNore

Interesting. Is your b12d from vegetarian or vegan diet? If you're deficient in B12 because of your dietary intake of only vegetables and no meat, then pills would be able to be absorbed and you'd be able to be just fine. That's what you should be doing if you're vegetarian or vegan anyway.

If you're a meat eater and you are diagnosed with a B12 deficiency, it would be strange that you could absorb tablets. It's great that you can. I'm not sure how long you've been taking the tablets and not injecting, but I'd say after 6 months of doing just tablets, you should know whether or not the tablets are really working. I would take them for at least 6 months and get another test. If you're absorbing the tablets your B12 levels should be 500 or more I would imagine. Just a guess.

Good luck. Not injecting would be heaven.

palmier profile image
palmier in reply toEllaNore

Note that the tablets mentioned are quite strong, 1000 ug, which is more than a years need if you go by a daily requirement of 2.4 ug. It seems that some people can absorb a little, around 1 % from these, despite having an absorption problem. For comparison, a normal daily multivitamin contains only 2.4 or perhaps 3 ug.

Efficient IF-mediated absorption is very limited in capacity (something like 10 ug), so no one absorbs all of a 1000 ug tablet. Simply put, with IF you can absorb a lot (typically 50 %) from a little, without you may absorb a little (typically 1 %) from a lot.

Technoid profile image
Technoid in reply topalmier

my understanding is that B12's intrinsic factor binding mechanism saturates at 1.5-2mcg every 3-4 hours. The 50% absorption is only for these small doses. After that, passive absorption is the main absorption route, which is around 1% of any dose. In theory passive absorption should work for anyone, but for some with PA it does not seem to work, or not work effectively enough. I have read the exeperience of someone in the US on these forums who took sublingual tablets at a quantity more or less equivalent to injections if you run the numbers. It seemed to work for him but I wonder about unbalancing the gut flora with so much B12 taken in that way. With sublinguals you often have artifical sugars like Xylitol, not a big deal with one pill but if you take 8-10+every day? Eek.

john159 profile image
john159 in reply toEllaNore

I eat meat and other sources of B12. Been off the injections for only a month so you could be right and symptoms could return. After loading up I tried to span out the next injection to monthly but every time symptoms returned in 10-12 days. I will find out and post an update. My last B12 test was 256 pmol/L (On injections) before injections or tablets it was 39. Range of 37.5-187.5 Thank you for the help, John

EllaNore profile image
EllaNore in reply tojohn159

You're welcome. If your symptoms are returning after 10 to 12 days, then that's when you would need another injection. I'm from the US so our measurement is different than the UK measurement so I get confused about that sometimes. But regardless you're B12 would be much higher after injecting so getting tested for B12 is obsolete after you start injections. I would inject by symptoms and not by test results. When your body needs B12 it will certainly tell you. 256 after an injection doesn't seem really all that high. Regardless of your test results, you should just inject according to how you feel. And if you can't get the injection from your GP then you might have to self-inject like most of us do. I don't even see my doctor anymore about pernicious anemia. nobody has the correct answer, so I just medicate myself and listen to the people here. They have not steered me wrong yet.

Janeames profile image
Janeames

I take b12 injections monthly. My health provider wouldn't let me have load up injections so I decided to take methycobalamin everyday too. I do believe the methy type bypasses the stomach and is better than cobalamin type but whether better than b12 injections of cobalamin idk. Good to hear your thoughts my neurological symptoms have gone though ie migraines speech problems but still have ringing in the left ear.

Budsa profile image
Budsa in reply toJaneames

Ringing in just one ear should always be checked out by your doctor, as it can be a sign of something other than tinnitus, which normally affects both ears equally.

Technoid profile image
Technoid in reply toBudsa

It depends. If you damage your hearing in just one ear, you might just get tinnitus in one ear (I have this, unrelated to B12).

Hectorsmum2 profile image
Hectorsmum2

thyroid issues can lead to gut issues and lack of B12 even if you dont have PA especially if you are undertreated. You could obtain your own levo and treat your own thyroid.

KStandKen profile image
KStandKen

Please excuse me for veering slightly off topic, but I've been having vitamin B12 injections at my GP every nine weeks (reduced from twelve weeks at my request) and hardly feeling any benefit even a few days later. I'm happy to say I haven't experienced anywhere near the severity of symptoms that some have reported on here.

I wasn't aware of the existence of vitamin B12 tablets, but I happened upon some at a very well known British pharmacy chain and decided to give them a try. After around three months of taking 1 x 250 strength tablet first thing in the morning I still have occasional episodes of being 'bone weary' but I have to report a slight improvement in my condition. It hasn't been life changing, but an improvement all the same.

It maybe that the medical profession will state I am just wasting my money, but I'm considering doubling the dose to see what happens.

I suspect my GP won't reduce the injection gap any further, and although I take four Insulin injections each day, I have no desire to self inject B12.

Best wishes to all on here. K.

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