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Pernicious Anaemia Society
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Vitamin B12 sublingual hydroxocobalamin

Hi everyone New to this community and first time posting. I'm a 68yr old male.

Just recently diagnosed with clinically significant B12 and Folate deficiency also IFA negative. We are almost 100% sure I do not have PA , rather my body cannot make B12 which we think could be related to long term PPI use. Symptoms etc have been around for a number of years. Since B12 dosing feel much improved and GP has put me on a 3 month B12 top-up program. Currently taking 5mg folic acid. Just had my levels checked and they are at the top end of the range . Due to see my GP next week for a review.

The question I have : if I self prescribe maintainance doses of B12 is sublingual as effective muscle injection ?

This a very informative site and I have already extended my knowledge from the posts of the admin and community team. Thank you. Neil

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Muscle injection is always more efficient than sub-lingual. But as your B12 deficiency seems not to be caused by PA , but the use of PPIs, sub-linguals will probably serve you very well . I never seen Hydroxocobalamin sub-linguals only Methylcobalamin.

PS -no one can make B12 . IF negative doesn’t always mean no PA . It’s a notoriously inaccurate test .

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Hi wedgewood. Thank you for your reply .Yes I was a little surprised , maybe I should investigate further. I'm still trying to understand more regarding this deficiency. Time will tell.

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Hi guitarman49 simply put - with a normal healthy person the stomach lining has what are called "Gastric parietal cells" which produce "Intrinsic Factor" which travels down and binds with the B12 in our (animal products) food and eventually into the bloodstream.

This process depends on high levels of acid in the stomach and your having taken PPIs in the past and now your age reduces that acidity and so you have become B12 deficient and as you cannot absorb it via your digestive system you have had to have it injected.

Why are you thinking of self supplementing with sub-linguals? It may be that the 3 monthly schedule of injections will be sufficient for you.

Are you still having any neurological symptoms?

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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Hi clivealive I have read may of your posts during the past few weeks and greatly appreciate all your knowledge and your reply to my post.

I would agree that probably the 3 monthly schedule will be sufficient as most of my symptoms have just about gone particularly the brain fog and low energy levels ,now left with some tingling down the back .

The question of supplementing was one of interest just in case it was needed.

Thanks again

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I'm pleased that you seem to be getting the treatment you need. In my own case for nearly forty years whenever I had a four weekly injection of cyanocobamalin (the only injection available before hydroxo) it was my responsibility to make my next appointment at reception and down through the years I used to "slip in" the odd three week one when I "felt the need" and no-one ever queried it until one day I made the mistake of saying to the nurse "I'll see you in three weeks" and she said she wouldn't give me another injection in three weeks because my prescription was for four. She reported me to my doctor who called me in and also refused to vary the frequency.

So seven or so years ago I joined the Pernicious Anaemia Society and asked on their then forum "Am I the only person in the world to have a return of neurological symptoms in the run up to my next injection?" and was amazed to discover NO! I was not alone.

I learned all I could and realised that I had lived in complete ignorance of what P.A. was all about as neither a succession of nurses or doctors had ever asked me how I was coping.

I went back to my GP, argued and won my case and I now have my injections every three weeks and I'm still "clivealive" and over 75 :)

The cause of my P.A. was the removal of two thirds of my stomach at the age of 17 in 1959 due to a perforated peptic ulcer.

Personally I use a B12 spray between injections and my wife is convinced that it helped me through a particularly strenuous holiday last year when we had some steep hills to negotiate between our seaside apartment and the beach.

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Good to hear from you again and thank you for the additional information as to your history with PA.

At 27 yrs old I was also diagnosed with peptic Ulcers due to H Pylori , but thankfully unlike yourself they did not perforate and treated successfully with antibiotics although I still have chronic digestive and heart arrhythmia problems .

I guess I'm lucky in having a GP with excellent knowledge and is prepared to offer the correct treatment appropriate to the condition of the problem. He has also sorted out many of my other issues unlike the Doctors at my previous Practice and the reason I changed in Dec 2016. He also knows personally my Cardiologist (Freeman Hospital and Gastroenterologist (Sunderland Royal Hospital) which is a great help.

Back to the question . Seems most people prefer the spay so should I need to supplement then I take your advice.

Thanks again , stay well.

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Sublingual B12 may appear to work for you, but some time down the road it may stop working or partially stop working and you may develop neurological symptoms gradually without noticing or attributing the symptoms to B12 deficiency. This happened to me. Please beware.

b12-institute.nl/caution-no...

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Hi Martin Thank you for your reply and the link regarding the caution.

My question was one of interest in case I have to supplement the already accepted program (3 monthly) of B12 by injection which I will be on for the rest of my life. Stay well.

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Hi guitarman49

I took H2 blockers for many years which were recommended by my doctor because of another medication I was on and am still on. It was Ranitidine or otherwise known as Xantac). I am not taking it anymore and feel just fine without it. I was tested for H-pylori and don't have it, but I just had the breath test. I should have requested both blood and breath. Is that what you did to get your diagnosis? Also what test did your cardiologist do to find out about your arrhythmias? (I have them too, feels like my heart is purring or vibrating down the middle of my chest)

With regard to sublingual hydroxocobalamin, my husband sourced a product for me here in Canada.

Something you could try are transdermal B12 patches. The source we use has B12 and Folic Acid together. Seems to make me feel better.

Hope this helps. Your not alone in your quest for health.

Terri

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Hi Terri

Thanks for the response to my post.

I was diagnosed some 40 years ago with Peptic ulcers by means of endoscopy during which time they did biopsies of the stomach and some other tests. The cause of the problem was H pylori. Treated successfully with antibiotics and Tagamet (H2 inhibitor). I have had a number of endoscopy's since to monitor the digestive system (last one March 2017) during which they have always taken samples and thankfully always negative for Pylori and other sinister things. Due to reflux problems I'm on a high dose of PPI's. Never had the breath test.

With regard to the arrhythmia I have Paroxysmal Atria Fibrillation . An ECG confirmed this in 2013 after I presented myself at my GP's subsequently being referred to an Electrophysiologist at the specialist heart hospital. My heart occasionally beats chaotically , in other words not in sinus rhythm but reverts back to normal after a couple of hours. Like you it's the thumping in the chest which can be frightening. I had an PVI ablation Jan 2017 which has helped a lot but still have the occasional event.

This also brings me back to my original question about B12. Since the start of the treatment my heart seems to be much more relaxed so hopefully it helps.

Appreciate your input regarding B12.

Neil

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