So much for my confidence !

Well a little while back I posted a rep!y to a query about people being forced onto tablets instead of injections......the nurse practitioner at my surgery had asked me to change but when I told her I have no Intrinsic Factor she agreed I would need to stay on injections.

How wrong can you be..at a gp appointment yesterday for an unrelated matter my gp pounced....I am to be given tablets, I said no that can't be right I don't absorb as I have no Intrinsic Factor so need injections. He assured me that they have done tests and people do better on the tablets even if they have no IF. He even said I will feel better on the tablets. I was not happy and told him so , it endedwith him saying try the tabletsfor three months and if your B12 level drops I will reconsider after we test you.

Since my NHS injection is ten weekly I self inject anyway so my level will not drop.

Looks like I will waste NHS money for tablets which I have no faith in and carry on self inje ting just one extra the week my nhs one would have been.

Anyone have any experience of the tablets ? I note they are cyanocobalamin not hydroxy.

Ell

9 Replies

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  • Hi Ellj. This is a nonsense, as you know. So sorry that you're being subjected to this.

    I think I would ask him to show you, or direct you to the evidence (the tests he refers to) which will support his position - it's called evidence based practise, and it's what they are supposed to deliver.

    And I'm wondering on what he bases the assertion that you'll feel better on tablets! Perhaps he has evidence for that?

    Then show him 'The B12 Research Institute' document (third PAS pinned post when you log onto this page), which raises a serious caution in relation to the use of tablets or sublinguals for the treatment of B12 deficiency.

    And then ask him to explain how your body will absorb the B12 from tablets without IF...and provide evidence...

    And then he could do with reading the PAS pinned posts (highlight them and take them in if you feel like a battle - I would, 'cause I'm like that πŸ˜€). Treatment according to all the guidelines - injections (unless in rare cases when a patient has some kind of problem with injections).

    Absorption from tablets or sublinguals 1%. Absorption from injections 100%.

    Bad. Bad. Bad.

    πŸ˜–πŸ˜–πŸ˜–

    Grief....it makes me so cross... bet you can't tell πŸ˜€πŸ˜€

  • there is quite a body of research that shows that very high dose oral can be as effective at treating absorption problems as injections but it doesn't work in all cases - which is the concern. The tablets need to be at least 1000 mcg.

    If the GP is prescribing doses that are less than this then you definitely need to go back and point out that the oral dose needs to be much higher to have any chance of working - and definitely point out that it doesn't work for everyone. I believe the oral amounts used and licenced for use in the UK are 50mcg cyano so they are going to be useless.

    1% of B12 is absorbed outside the ileum so flooding the gut with really high doses can result in enough being absorbed and getting in to the blood. 1% of 1000mcg would equate to about 4 x RDA being absorbed.

    The problem will be the rate at which it is then removed from the blood as having an absorption problem means your body won't be able to store B12 as it would do if there was an absorption problem - if it stays in your blood then it might be okay but if your kidneys are removing it quickly it definitely won't be enough.

    Not sure but think most of the studies have tended to involve methyl rather than cyano.

  • Agree with Gambit62 . These tests have shown that taking 1000 or 2000 ug a day can work for many people.

    The only tablets licensed for use by the NHS are a poxy 50 ug. Is he expecting you to take 40 of them every day?

  • Hi Gambit 62. Interesting...and perhaps this is linked to Martyn's report that the pharmaceutical companies have been asked to develop high dose vitamin B12 tablets?

    Can see the potential value of going down the tablet route (freedom from injections and perhaps the potential to prevent the development of antibodies to TC11, and hence functional deficiency). But...do wonder where this approach, if adopted, would leave people (especially those with neuro symptoms) for whom tablets are subsequently found to be ineffective due to ongoing absorption problems. And also wonder about the rate at which blood levels would rise to achieve the level for neurological repair. Don't know...

    Hmm...I have much to ponder and learn πŸ˜€.

    Would be appreciated if you and fbirder have any links to the research so that I can read up on this πŸ˜€πŸ˜€.

  • this is a recent review of earlier studies

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

    and yes it is related to the invitation to pharma's. As I understand it the position of the PAS isn't complete opposition but is about a system that recognises that individuals are individuals so imposing a one-size fits all solution on people - be it tablets or injections - is not acceptable. Patients should be given a choice of and treatment that actually suits them.

  • Brilliant. Thanks Gambit62.

    Agree about choice and suitability πŸ˜€

  • Hi,

    Have assumed you're in UK.

    "He assured me that they have done tests and people do better on the tablets even if they have no IF"

    After reading this comment I shouted at the screen. Personally I'd want to know what tests the GP was referring to so I could check the research myself.

    I can't understand this. if you have no intrinsic factor then I assume you have been diagnosed with PA (Pernicious Anaemia). UK treatment for PA is lifelong injections. This is stated in the BNF (british national formulary) Chapter 9 section 1.2

    The GP will have a copy of this on bookshelf or access online. It's possible to get your own copy, new or second hand or reference section in library. GPs might show what it says in the BNF if asked politely.

    bnf.org/

    UK B12 treatment is also detailed on page 8 of the BCSH Cobalamin and Folate Guidelines. Its easy to google this. Has your GP got a copy? I gave my GPs a copy and take page 8 and page 29 with me to appts.

    I'd urge you to contact the PAS soon. Martyn Hooper, chair of PAS, has experience of dealing with doctors trying to change people from injections to tablets . Pretty sure there is a story on website or his blog about this.

    pernicious-anaemia-society....

    pernicious-anaemia-society....

    pernicious-anaemia-society....

    PAS tel no +44 (0)1656 769 717

    I am not a medic just a person who has struggled to get a diagnosis.

    Unhappy with treatment?

    Next link is about writing to Gps who want to stop injections and replace with tablets.

    b12deficiency.info/b12-writ...

    Does not mention BCSH Cobalamin and Folate Guidelines which personally I do if I ever write letters about b12.

    england.nhs.uk/contact-us/c...

    citizensadvice.org.uk/healt...

  • From what I understand cyano tablets are useless. Methyl tablets are closer to what your body can use.

  • Many thanks to you all for the detailed and helpful replies.

    I will gather myself up for the fight with help of this info and as soon as I can will challenge gp.

    Have also joined PAS .

    Hope you are all having a reasonable day dexpite the horrible weather.

    Ell. UK

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