I have recently been diagnosed with PA and I’ve had an initial booster course of 6x B12 injections with a plan for 3 monthly injections for life (based, I understand, on local UK NHS protocols, or how my GP has interpreted them).
I was therefore wondering if there is any benefit in taking oral B12 supplements too, particularly the sublingual type.
I have done a lot of reading on this matter and I can’t find any clear advice.
Any thoughts would be appreciated. Thanks.
Written by
Pa234aw
To view profiles and participate in discussions please or .
Thanks for all the advice. My GP has clearly taken the basic NHS path in my medication but I’m new to this so need to question harder.
So far I’ve not seen any significant improvements and whilst some of my symptoms fit the PA checklist (such as numbness in feet, tiredness, aches, increased tinnitus and headaches) I’m not totally convinced I have PA. However 2 blood tests (before any medication) showed that I was B12 deficient. The first being lower than the second which suggested some natural improvement in B12 levels over a couple of months.
My PA diagnosis was based on a blood test showing parietal cell autoantibody level positive and Intrinsic Factor antibody level negative. I’m not sure that confirms PA. Being crude, I guess that a positive PA diagnosis by my GP is a safer option than not, backed up by a low B12 level.
My folate, and ferritin levels appear OK. I’m taking a daily vitamin D3 supplement anyway.
As you have neurological symptoms you will need every other day injections to see an improvement, to flood your body with B12. Recovery happens very slowly and changes will be very subtle, not significant, and you may notice new symptoms as your nerves start to heal after years of deficiency, known as 'early treatment decline' or 'reversing out' syndrome. Time is of the essence, so self-injecting asap is the way forward.
Please post all of your test results so we can have a better idea. Looking okay to a doctor doesn't mean that they are, they have no training in biochemistry and vitamin deficiencies.
You have a firm PA diagnosis which was proved on a blood test showing parietal cell autoantibody level positive and Intrinsic Factor antibody level negative.
Please get hard copies of these, they will say time, date and names.
You had 2 blood tests showing B12 deficiency before treatment. Please also get these in hard copy.
You had loading doses which started at what time and date ?
You have signs and symptoms of P.A., plus, all of the above. You have P.A.
The treatment regimes are poor that is a problem.
I have tried sublingual and patches, not for me. Everyone is different.
Others will be along to say hello and provide further information. Many of us have to go private or do the necessary to have Quality of Life.
I have hard copies of all test results and they are also visible on my NHS health record via the NHS app. I’ve been keeping a personal journal of my symptoms going back to January when they first started to appear. Until then I was reasonably ‘healthy’.
The B12 loading ended 2 weeks ago today but I’ve not noticed any improvements. If anything some symptoms seem to be more constant now rather than having good and bad days.
My plan is to go back to my GP asking for more frequent B12 injections as I’m not due the next until February. Wish me luck. I also plan to set out all my symptoms in writing.
I’m also considering going down the private medical route but I’m not sure whether that should be with a private GP (who could be as equally clueless about PA), neurology, haematology or gastroenterology. Perhaps all 3. But trying to find consultants that are B12/PA savvy might be a challenge!
I have pernicious anemia. A lot of us self-inject. My husband injects B12 for me. It is a lot easier than having to go to my doctor each time I need an injection. Also, I can choose the frequency based on my symptoms. Sublingual 1000 mcg daily B12 worked for me for many years. But then it did not and I had to start injections because my toes were getting tingly. Sublingual B12 in high doses helps some people because even without the intrinsic factor, some can get into our bodies. Others require injections. Every other day is recommended while you still have symptoms.
I have a confirmed Pernicious Anaemia diagnosis . Only B12 injections help me. I’ve tried every sort of tablet , sub-lingual nose spray mouth spray , patches . Totally useless for me .I have to self-inject weekly to stay well . But we are all different .
About 50% of Pernicious Anaemia patients test negative to Intrinsic Factor Antibodies .
The medical profession in general has a poor understanding of Pernicious Anaemia. That’s why PAS was founded . We are all obliged. to self -inject . If treatment is delayed or not sufficient, you can get irreversible symptoms . Take your diagnosis seriously . You are lucky to get one . Keep us informed about your progress( or non progress !)
Until/when/if the protocol changes and unless you have an exceptional GP, the only way you will have adequate treatment is if you self treat by injection whilst taking all the necessary co-factors to utilize the B12 you are injecting. I accepted the inadequate level of NHS treatment offered for six months and went backwards. I stopped banging my head against medical ignorance at that point. My poor energy was better spent taking matters into my own hands.
At my hematologist’s recommendation (he also has PA), I started taking gummie B12 and treat it like a lozenge to dissolve slowly rather than to chew. I’ve been taking two 1000 mcg gummies/day & my B 12 level is higher than it was with a monthly shot
Thanks for the advice. I will not be going down the self injection route without proper research and preparation. It’s very early days and I have other avenues to explore first!
I agree with Orchard33. Finding myself with neuro symptoms after a really bad virus, it became clear I’d have to self treat with B12 injections every other day and it took much longer than I would ever have believed!
Everybody is different though Pa234aw and a lot depends on how long you’ve gone without diagnosis and extent of the neural damage.
To be on the safe side, personally I would write to GP, enclosing links to PA’s website with links for professionals, and ask for every other day injections, or at v. least more frequent injections to continue until neural symptoms finally subside.
Very Important not to waste too much time waiting. I, personally, would begin self injecting B12 every other day, as recommended in various U.K. and Dutch links also recommended by this forum.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.