You can actually get tablets from your gp instead now, you take 1 a day xx
B12 Tablets : You can actually get... - Pernicious Anaemi...
B12 Tablets
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I don’t wish to be rude but don’t you think if all we had to was to take a pill we’d do it? Majority of folk on this forum are unable to absorb b12, that’s why we inject.
If your deficiency is resolved by taking oral supplementation I can only say I’m envious & pleased your condition is improved by this method. 😊
Yes. But we have Pernicious Anaemia or other absorption problems. Which means we cannot absorb oral B12. Which means tablets are useless.
I second the previous posts . Ive tried oral tablets , sub-lingual lozenges , nose and mouth sprays , patches — all to no avail ..Useless for anyone with absorption problems e.g. Pernicious Anaemia.
Yes I was told to buy b12 by my Gp and take 2 x50mg a day she thought it would give me longer inbetween injections. I've tried them and many more bought .
I cant absorb enough even passively taking 2 1000 mg daily.
Disappointed....yes.
But recorded on my medical notes tried !!
Do not sure why you posted that small statement.
Do you notvthink everyone on here have tried tablets.
They work if not eating enough b12 foods or you are vegan.
Or you are post menopausal and absorbtion decreased
Or any sex and over 50 would benefit from some vitamin supplements including b12.
I naively thought as I had a very good mixed diet that kept me well it would continue.
Vegans should know to monitor and supplement .
Some of us just get caught out as it's not included on general blood forms and Gps do not know enough to simply test it if presenting with tell tell symptoms. We pug uk and shut up then in my cases collapse.
A tablet. I wish
So you have completely replaced injections with tablets How wonderful
Yes, but there are many clueless doctors out there who don't know much about pernicious anaemia (doctor don’t like to admit they don’t know something) - a term we use for historical reason that means fatal (how the word pernicious is lost on doctors I will never know) Megaloblastic anaemia is a symptom of vitamin b12 deficiency which is a difficult vitamin to absorb; we need to produce
a protein - intrinsic factor to absorb it. Autoimmune metaplastic Atrophic Gastritis (AMAG) is when your immune system mistakenly destroys intrinsic factor & is what many of the people given a diagnosis of pernicious anaemia have but many other digestive issues can also cause vitamin b12 deficiency e.g Inflammatory bowel disease & Coeliac disease; we tend to lump all absorption causes together & presume its absorption related unless its clearly diet related.
Without intrinsic factor at best you will absorb about 1% of the vitamin b12 you ingest via passive diffusion.
I think there is a obvious conflict of interest for GPs to free up nurses bmj.com/content/365/bmj.l18... as no one can rationally believe with a straight face that 1mg oral b12 absorbed at 1% is the same as 1mg of intramuscular or subcutaneous b12.
Although it would be interesting to know what effect 100 mg oral B12 would have.
1mg cyancobalamin will probably help someone who can produce some Intrinsic Factor that they can absorb enough from a oral supplement but just have trouble absorbing enough from food but to presume it will help everyone is absurd.
Ah! But if you can absorb 1% from a 1 mg oral dose then one tablet a day for 90 days gives you just about the same B12 as 1 mg IM every three months. So it should be plenty.
Yes in theory (but there is still much behind the biochemistry we don't know) and it up to 1% and who knows what it is for people with digestive issues that can cause vitamin b12 deficiency too e.g Inflammatory bowel disease & Coeliac disease.
Then how many people truly have their symptom addressed by the arbitrary defined three months between injections pernicious-anaemia-society.... who are not also taking some other form of b12 (sublingual b12, spray or patches) and how many of these are are not are inappropriately on anti-depressants or an elderly person who can be safely patronised.
I typically need to do them weekly and don't know why like diabetics the default treatment is not to teach us how to self inject based on symptoms when much of the push to oral b12 is about freeing up nurses & how much time do GPs waste dealing with people being poorly treated for pernicious anaemia.
It almost as unbelievable today as the resistance there was to home glucose testing in 1970s for type 1 diabetics by the medical community in the United States because it would directly & indirectly (less people needing treatment for poorly managed diabetes) reduce the work many medics would have to the point it caused a least 1 person with type 1 diabetics to retrain as a doctor amazon.co.uk/Dr-Bernsteins-...
We also don't know if there is a difference between cyancobalamin or hydroxocobalamin
and if the body processes vitamin b12 differently and as it can be used as an antioxidant by the body it wouldn't surprise me if the digestive system commandeers it before the nervous system.
I believe there has been some measurements that suggest that about a third of the B12 injected intramuscularly is absorbed into the body. However, it is not clear where and how it is absorbed. Tradition has it that about a third again is stored within the muscles. However, with both injections and oral supplements how much in the blood is inertly attached to the protein haptocorrin and is not readily available for use in the bone marrow or the nervous system ? Is it the 70 to 80% reported for young normal subjects or is it even more. Does anyone know. The key is whether or not the patient's symptoms are alleviated but many doctors now seem to think that regularising B12 serum levels is the primary objective and ignore the patient's continuing complaints. The problem was recognised by the Haematologists when they drew up their treatment guidelines but someone in primary care is ignoring this.
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Thank you PikachuIn the interests of balance - you are correct that for some people very high dose oral B12 can be effective as a maintenance dose and I am glad that it works for you.
Unfortunately it doesn't work for everyone and the sad fact is that those who find that it doesn't wori for them tend to shout down anyone who suggests it will work for people with PA.
There are a number of reasons for being cautious about oral B12 as a compulsory/first choice solution - particularly that it really doesn't seem to work for many people - it works for me but then I will also top up occasionally with an injection and I use a lot more than the amount that is generally prescribed.
There are studies that have also shown that even if high dose oral does raise serum B12 it doesn't always seem to work to reduce secondary indicators of B12 deficiency such as MMA and homocycsteine.
The PAs is currently looking at a trial of high dose oral of pharmaceutical grade (ie consistency of dosage in tablet guaranteed at a level that isn't guaranteed for vitamin supplements).
I see that you have had a mix of responses from people, including a few outright deniers of high dose oral as a possibility and I am sorry about that.
"There are studies that have also shown that even if high dose oral does raise serum B12 it doesn't always seem to work to reduce secondary indicators of B12 deficiency such as MMA and homocycsteine"
Do these studies suggest how the body can tell how the B12 got inside?
In the interest of balance!!!! Are GPs able to prescribe 1 high dose tablet per day? I don't think so. I think the responses have been restrained. This is not high oral dose denial, it is low dose denial for patients with serious deficiency symptoms.
GPs are not restricted to prescribing in accordance with the BNF though it is true that at present there aren't any licensed tablets of this strength available in the UK. There are also local trials in some areas of the UK of using 1000mcg tablets and the current interim guidelines suggest 1000mcg tablets.
I am not going to claim that GPs always understand the difference between dosage needed by patients with absorption problems and those required to correct dietary B12 deficiency but an atmosphere that denies outright that 1000mcg could be effective is an unbalanced atmosphere.
GPs are not restricted to prescribing in accordance with the BNF though it is true that at present there aren't any licensed tablets of this strength available in the UK.
See my reply further down about Orobalin.
If you have been put on injections you have been put on them for a reason . Your B12 can become incredibly low without your b12 injection treatment and you can get very bad side effects.
Me and others with PA are having a hard time with doctors swapping the injection for the b12 tablets that can not be absorbed.
Be careful and find out if you have just a deficiency or PA, you can become incredibly ill if your not treated properly.
Pointless if you have absorption issues, hence why we have to inject? If they work for you, then you don't have pa...
Pikachu74, can I politely ask if you actually have a B12 deficiency, if you have been given a cause for this if so, what treatment you have received, and whether this included a successful transition from injections to oral treatment?
As I think an account of your personal journey would be very insightful here, both for those who could potentially benefit from a tablet regime, and for those who cannot.
A year ago I was diagnosed with PA after having a B12 of 132 pmol/L and positive to intrinsic factor antibodies. After that I was told I would need an injection every 3 months. I had one injection that caused sharp abdominal pain about an hour later and went home to lie down. My brain fog and memory loss was extreme. Approx 10 days that I still don't recall. I felt I had to try sublingual tablets even though they probably wouldn't work. At first all I needed was 250ug a day to feel normal again but gradually I have had to increase to 1000ug a day due to nausea and headaches. My recent blood test says my B12 is 480 pmol/L although my iron is low again so I am taking tablets for this as well. My levels do seem to be lower some days and I get numbness and tingling in my hands and feet but I'm mostly well at the moment. I go in to request a blood test when I feel things are not right, hence recently learning my iron was low. My doctor has not been much help but did recommend this site for support. I still don't really understand cofactors and how to tell what or how much I need. I have put on 10kg and I think it's partly because my digestive system just isn't working the same any more. There's so much to learn.
You have always been able to get tablets and other oral supplements, but if you cannot absorb through your gut, they are rendered less than useless. In which case injection is the only practical method of getting the vitamin into the system.
If only it was that easy!!
At present NHS GPs can only prescribe 50mcg tablets. In patients who have a very poor diet or are vegan these small tablets may help. However, in patients who present with B12 deficiency symptoms, reported relief of these symptoms is rather unsuccessful, even in those patients who do not have neurological symptoms. Most published studies report improvement in only 20 to 30% of patients. It is also stated that at least 500mcg is required to get even partial relief. Success with tablets depends on the mix of patients presenting and this is rarely properly defined. According to my husband the best results are reported by a gastroenterologist group in Strasbourg who report success in 46% of their patients. However, they now acknowledge that 1000 to 3000mcg of B12 is required. It also appears that few of their patients are presenting with neurological symptoms. It is therefore quite clear that very many deficiency patients do not get relief from their symptoms by taking oral tablets.
There is a licensed 1000 microgram oral cyanocobalamin product - Orobalin:
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No idea as to likelihood of being prescribed.
Thank you for that. However, presumably in the UK this requires a prescription and as you say how often is that happening in NHS primary care.
There are 50 mcg, 100 mcg and 1000 mcg formulations licensed for prescription.
Last May my husband was denied his injection because of Covid. We were told to get tablets on “minor ailments “ prescription from the chemist - they were 50mcg , fine for a dietary deficiency but no use for someone who can’t absorb it. He can’t absorb b12 and probably other things as well due to long term prescribed metformin and PPIs. I now get 1000 mcg over the counter at the chemist, I am not convinced that they are as good as injections but he must be absorbing some or still depleting any he has stored!If they work for you that’s great.
Pernicious Anaemia is a serious life long auto immune disease that has very serious consequences if not treated. I believe that if GPs are withholding injections this is absolutely not medically right. I used to be a nurse and would still be if I didn't have ME/CFS so I know what this disease can do to people if untreated. My gran passed away from the illness because it was not diagnosed and she was untreated. This was many years ago but the serious aspects of this outcome can never be ignored.
Tablets correct deficiency from diet. I am on that journey as I had low B12 two years ago but I am a strict vegetarian. My levels have come up with supplements but I have to watch the levels very closely as my gran had this condition and I am suspicious I will develop it. I eat the same diet as my husband but his levels were twice mine before oral supplementation.
Pernicious Anaemia is very unlikely to be able to be managed through tablets. I wish it was that simple and the consequences of this are dire if they don't work. B12 affects every system in the body and some of these are not reversible if they get too severe.
You may, if you have some ability to absorb, get some benefit from sublingual, but if you choose this route please get your levels checked even using online companies if your GP says no to make sure it is working.
When I was diagnosed my GP didn't even try me on tablets he knew straight away that the tablets would be pointless because PA is an issue with absorption and started me on the injections straight away ! My sister because she is a vegetarian although her levels were as low as mine her GP still refuses to give her injections just because the tablets raised her levels slightly but not enough ! It really does depend on the GP and advise your given , i find it amazing how GPs view PA differently . If tablets work for you then that is amazing keep it up ,as I think many of us would rather not have injections unless absolutely necessary .
Your sister being a vegetarian would not exclude her from also having PA. Your own diagnosis would make it more likely. I hope she is looking after herself since her GP is refusing to consider this as a possibility. I have been a vegetarian for about 40 years- for most of that time, strong and healthy. I thought my diet was a good one and had no reason to believe otherwise.
I was found to have B12 deficiency, low folate and ferritin in 2016 and now have vitamin D on prescription because osteoporosis of the spine was also discovered.
I have been working on a return to better health since 2015 and self injecting since 2017. My immediate family have vitiligo, psoriasis, Grave's disease among other autoimmune conditions.
Regular B12 injections for years have now made the question of whether I eat meat or not immaterial. Boost spray has no effect on me. Despite frequent injections, my MMA level remained raised for 3 years. My blood test this winter gave the best results since first tested, and am hoping for similar good news on a Dexascan result.
What I have found personally is that raising serum levels of B12 alone can't get you back to work. Management of symptoms can take a long time, and the balance can change. Good to have a GP that can regularly monitor all else: folate, ferritin, vitamin D, thyroid etc.
I am no longer that concerned about a diagnosis.
I think Pikachu74 was just trying to be helpful.....it was just for information and not an instruction!
This forum is a fantastic resource with lots of knowledgeable members. Though I think that sometimes it is easy to forget that some here have more experience with PA than others.
Indeed some may be interested to learn more and not have PA or problems with B12 deficiency at all.
Wow! That was a very unfriendly reception to a helpful post. I am assuming that you were referring to the 1mg b12 tablets that are now available at pharmaceutical grade via your GP.In a few countries this is now the normal treatment for any b12 deficiency, including PA. Thanks for posting.
My understanding is that B12 is separated from protein food in the stomach by the action of the enzyme pepsin which requires an acidic environment to work in, which is why ppis usage can cause deficiency as they block production of stomach acid. Then the separated B12 combines with intrinsic factor and is absorbed, which is why people with PA can’t absorb it and have B12 deficiency as they don’t have enough IF. Absorption via intrinsic factor is the main way that B12 is absorbed into the blood stream. However, a small amount can be absorbed by diffusion ( movement of a molecule from an area of high concentration to an area of low concentration) so in theory if you take a high enough dose of oral b12 tablet daily then you might be able to absorb enough to keep you going if you have PA providing you don’t have any other problems affecting absorption. If you are deficient to start with this would require very high doses of B12 so injections would be much more efficient at correcting the deficiency but possibly daily high dose tablets could work long term. This would require more regular blood tests to check B12 levels to see if tablets were providing enough and blood tests are more expensive than B12 injections. Also it’s unclear what the ideal normal serum B12 range is and how much of that is active B12. Normal range seems to vary between individuals. Also if you have multiple reasons for malabsorption then B12 absorption by diffusion would definitely not be efficient enough. It is such a shame that more research into B12 deficiency problems isn’t being carried out as it affects so many people.
Wonder if liposomal would work as the absorption is much higher
If PA sufferers cannot usefully absorb any B12 orally (" If they {tablets} work for you, then you don't have pa...
") how is it that in the 1920s Whipple and others reported improvements in patients by feeding them raw liver?
To answer that, you would need facts- more about the research, the study group : how many patients in study, did they all have PA, how was PA determined, what constituted "improvements" and how measured, whether any of the patient group were asked about improvements in symptoms, and whether this was followed up, comparison of lifespan compared to average, cause of death etc.
For some people, the tablets have not been working and these people have deteriorated. This has become obvious in posts that we have all read here during this pandemic. They are also part of an experiment.