Pernicious Anaemia Society
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Which brand of b12 supplement should I use between injections 4 weekly

Hi I'm so confused I need advise on what to buy as I'm very sensitive to meds . I am on the holland and barrettt b12 and don't think it's helping . Just gone through amazon and am so confused . I have been luck my gp has changed my regime from 3 monthly to once a month . Next one next week . So I am going to use my hydroxocabalmin Im brand by Auden Mackenzie which worked when I first got loading doses . The second brand I got from pharmacist by a company called focus has not worked or it was the length of time between injections ( 3 months) so please can u all advise the best b12 supplement . Also folic acid supplement and vit d as these are both low also . Symptoms are slowness weakness in legs and balance . Thank u . Please tell me simply the names as I have such bad concentration at the moment .

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Hi Andypandy30 I don't understand why you appear to be sourcing your own B12 medication when your doctor has changed your "regime from 3 monthly to once a month".

Can not he give you a prescription for your injections plus folic acid and Vitamin D?

If you have an absorption problem what you have from H & B (their spray?) may not be much good for you.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well

.

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Is an absorption problem different from pa Clive or does it mean the same thing . ? If so I never received the result of that particular test for intrinsic factor so will have to make an app to get the result . Such a waste of resources ! Anyway . I am not getting enough I suppose from the tablets from holland and Barrett what is the spray ? I could try this . Doctor gave mea prescription for stexerol d3 but no one seems to use this !

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I much wiser person than I posted this comment a while back:

"Treatment for PA and non-dietary vitamin B12 deficiency is virtually the same."

"The symptoms of PA are the symptoms of the B12 deficiency that it causes. If the cause isn't dietary then it is an absorption problem so you need to find another way of replenishing B12 initially. Most absorption problems aren't treatable but a few are - notably h pylori infection - which would mean that once that has been dealt with you would be able to absorb B12 from your diet so wouldn't need maintenance shots for life".

In a normal healthy person the stomach lining has what are called "Gastric parietal cells" which produce "Intrinsic Factor" which travels with food through the small intestine which is made up of three parts - the Duodenum, the Jejunum and the Ileum.. Iron is absorbed in the Duodenum, most other nutrients in the Jejunum and our friend B12 in the Ileum. Here the Intrinsic Factor binds to the B12 and the "B12/IF Complex" enters the cells on the wall of the Ileum after binding to receptors on the surface of the Ileal cells, allowing it to enter the blood stream.

Sadly some people with "traditional P,A." either do not produce Intrinsic Factor or if they do, they also produce an antibody which destroys it and it is then called "Autoimmune Pernicious Anaemia". In addition it can happen that we produce "Parietal cell Antibodies" and "Intrinsic Factor Antibodies" which totally wipes out any chance of absorbing the B12.

The IFA test is unreliable in that it gives false negatives in people with PA half the time. So a negative result doesn't mean that you don't have PA. However, a positive result is a sure-fire, 95% certain indicator of PA.

The spray is called "Better You B12 Boost" and on a maximum four sprays per day lasts for about six weeks and costs around £12 but could be cheaper online. It's quick and easy to use and actually tastes quite pleasant. I used it on holiday last year and my wife commented that I did seem better able to climb up and down the steep hills to our seaside apartment than she would have expected. However I do have P.A. so whether it is psychological or not is anybodies guess.

I hope you can get hold of your test results

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Thank you for all of this Clive . Much appreciated that you explained this for me and it is much easier to understand x

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Thank you so much . Can I ask why u chose this one ?

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Hi, my b12 on DEC 13 just gone was 178 I was not prescribed anything but began sublingual linden b12 available on the internet and a month later my b12 was something around 450, I just hope it keeps climbing.

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Hi sorry replied in wrong place . Thank u for reply . I'm glad it's working . Can I ask why you chose this one ? What are your symptoms ?

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I had used h&b b complex before I was initially tested for a month over October, but as it contains Wheat I was taking a chance which began to cause problems, as I am either celiac or gluten intolerant. I imagine had I been tested in September I may have been much lower than 178 it was in December. My symptoms have been going on for many many years. I really thought that "this was my lot" in life until I saw a program on the TV which highlighted b12 deficiency. I had ulcers often due to involuntary cheek or tongue biting, numbness of my hands and parts of my legs, extreme tiredness, depression, muscle wasting, shoulder, lower back and knee pain, often being unable to walk, very poor memory, inability to concentrate, really it seems like the past fifteen years have been a blurry bad nightmare. The absolutely useless doctors often made me feel I was being a nuisance, and a hypochondriac. Admittedly they used to do the of blood test which would come back normal, when I challenged them saying maybe the test didn't cover what was wrong with me, I would then be talked down to like I was an idiot. I changed doctors after I asked for a copy of my blood test in December, where I saw my b12 was low, and the doctor had said it was normal. (I only had the b12 test because I saw a locum and asked for it) my new doctors did a new test in January showing the rise in serum b12 but other than that I am not sure how good they are. Just ordered more b12 as things are getting better slowly and life seems better, though sometimes it takes a few hours to get going and walk a bit.

Good luck and keep going.

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Thank you for writing all that . Everything uv written is how I feel ! I received loading dose b12 injs in April 17 after much persuading doctor who was not clued up at all but thanks to the good advise here I took all my info in and she said she would try 4 weekly instead as after loading doses when I felt brill I started to suffer symptoms again . It's been a tough year . I haven't been able to find something else to sustain me until injection again and am considering self injection Iv got so bad . Thank you for your help . I hope u continue to improve xx

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Hi Andypandy30. I don't know where you live. Are you in the UK? Thanks to Clive and others i have learned so much about this miserable illness. My injections were brought down to every 2 months but the last one was at the 4 weeks. I buy vitamin B12 patches which have been a tremendous blessing. I started with 1000mcg ones but now I can get 5000mcg patches. I haven't tried the subliminal. Hope you get on ok. ☺

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Thank h Margaret-S yes uk . I really can't last even the 4 weeks ! So I'm trying to find best solution . Also thinking about self administering 🙈Bit scared about that x

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Andypandy30, I haven't gone down the road of self injecting yet. A lady in a group I joined told me about the patches because she had been using them successfully. I thought I would try them and for me they have been a tremendous blessing. They are called Vie patches B12 +10. 100% Natural. You can't overdose so they are perfectly safe. I honestly don't know what I would have done without them. If you go on Amazon uk and type in B12 Vie patches you should find them quite easily. The injections from the doctor are hydroxocobalimin which the body has to covert before it works and apparently it doesn't work for everyone. This is the problem we face because with the doctors it's a case of " one size fits all" which isn't true unfortunately. The patches are methylcobalimin which works immediately. Much better than self injecting if it works. Please let us know how you get on . ☺

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Oh because it was cheap, gluten and dairy free!!!

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