Hi all, had pernicious anneima now for 3 years and I been told by GP only injections are need every three months but I'm struggling, now I spoke to an awesome guy at the pernicious Annemia website and he stated that it's nonsense and that there are sprays and tablets I can take to help aswell. I have seen on eBay this spray called Betteryou and I was wondering if you guys have come across it and if you tried it, does it work??
Thank you
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Know lots of people have tried it and it works for some, but not others.
I think it is cyano cobalamin rather than hydroxocobalamin (which is the form you will be getting your injections) so part of the difference could be down to the different forms as people do respond differently to different forms - there are also methyl and adenosyl forms (which are closer to the forms that the body uses at the cellular level so can be particularly useful if someone also has a problem processing B12 from one form to another).
Its also possible that, even though the idea is that it is absorbed through membranes in the mouth, that actually a lot is going through the gut and although 99% of B12 is absorbed through the ileum 1% is absorbed elsewhere in the gut, so actually the gut is being flooded with B12 as well ... so some parts of the world do use high oral doses even where there is an absorption problem - though there are a lot of people for whom that really doesn't seem to work ... and if the gut is compromised in some other way then it is unlikely to be effective.
Nasal sprays are another option - work well for me ... sublingual spray helped a bit but was nowhere near as good as the nasal for me - but again everyone is different.
All you can really do is try it and see ... and if it doesn't seem to do enough then try something else ... sure you will find something that does work eventually.
Pity that you can't get a spray that works to get GPs to see sense
I am just looking at the Ingredients list on the "Better You B12 Boost spray" kept in my pocket. It is Methylcobalamin. The recommended dose of 4 sprays per day is 1200 micrograms.
Hi Gambit. How do I private message you as I am Quite new on here. Anyway just to say last week after it has beeen about a month since I finished my 6 loaded injections I started to get palpitations n a dry mouth which is usually start of a bout of depression. Went to see Nurse to ask for a blood test to see if my B12 had gone down. She said don't bother going for blood tests have another B12 injection now. I was surprised but accepted it.i have now started taking B12 sublingual and folic acid from Amazon plus strong probiotics. Feeling ok and I sit in front of SAD Lamp for 30 mins every day.
So as you can see I am taking notice of your advice. I still want a blood test before my next injection but I suppose I would have to stop taking the additional tablets to get a true reading. Thanks again Lin
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Good to hear that the nurse was so responsive to you. You would need to be off B12 for about 3 months for the test results to have any chance of meaning anything - but it may still be worth getting one done if only to check what your folate levels are like.
Word of warning on the SAD light - not recommended to use it after 6pm as it can end up messing with normal sleep rhythms - probably not that much of an issue at this time of year but once we get into the autumn. Have to admit that it is quite a while since I used my sad light.
Glad that the B12 seems to have done the trick with the depression - and also good that you have some clear signals that you can use as guidance for when you need more. If it has been 4 weeks then that probably is an indication that that is the point at which your B12 levels have dropped again. Nobody is really sure where the 3 months they use for maintenance in the UK comes from - in germany it is one month - one theory is that it was a response to a study in the 1960s which showed that taken as an average people retain hydroxo twice as long as cyano - which was used as monthly shots. However, the study showed a huge variation with some people only retaining it half as long ... that was the point at which it moved to once every 2 months .... but there is nothing to explain why it then went to once every 3 months where there isn't neurological symptoms.
It certainly works for me, but I've switched mainly to sublingual lozenges because they work out cheaper for the amount of B12 I need. As Gambit says, I think it's probably a case of experimenting to find out which delivery system / brand works best for you - I've heard such different experiences from different people.
You can have B12 injections every month now . I have had them monthly for the past 20 yrs and they have kept me stable . I had to fight for them but was worth it . Now the are new directives stating monthly is permissible
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