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.
B12 can be prescribed every other day until no more improvement if neurological symptoms then 2 monthly. In fact ' in the patients best interests '
G.ps can prescribe more.
Theh look for a good clinical response.
I'm presently prescribed 2 weekly b12 injections 💉
PA is hard to diagnose .
As you have s diagnosis get a print off for your own records .
I'm assuming a positive Intrinsic antibody test.
Gps have little training on this and all differ with treatment in the NHS.
I'm constantly challenged.
B12 stopped .
Although to date nothing else found to treat!!
I hope it was caught early and you have responded well.
You don't mention symptoms.
As for sublingual b12 worth a try .
Would have to be at least a 1000iu
I tried but didn't work for me. The aim was to inject less frequently .
I'm reliant on B12 injections that I know go straight into the blood stream.
Only some utilised at cell level.
Lots of useful threads to read on here.
Use the search tool.
Posts will pop up about sublingual b12
Only a small minority get benefits from it.
Passive ansorbtion possible.
Of course dietary b12 deficiency it works well .
Keep an eye on folate ,ferritin iron levels and vit D .
Often dip.
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.
Hi and welcome Pa234aw,
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.
🐳
Thanks Narwhal10,
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.
Certainly is.One out of3 neurogists knew a little as read everything available.
He himself b12 deficient and couldnt ' fit' thd NHS basic NICE guidelines of frequency.
He was the one that wrote to my Gp.
My PA is assumed as never given a IFAB test.
If tested later I was told a negative test woukd mean I didn't have PA and treatment would be stopped .
Many Gps think this .
Ignorant of the fact it only picks up about 50% of those with it.
My diagnosis wax made as a very low first b12 level 106( 200-900)
And severe symptons ,enough to get a brainCT and MRI.
Which did reveal some changes .
Nothing 'sinister' their words . Thank goodness .
Even with that relief my symptoms the same .
I got worse before better .
Like rebooting a Co.puter.
Nerves waking up randomly a painful process.
Nothing else was found to treat .
Only B12 has given me slow improvements.
'Proof of the pudding '
As on no medications .
I do hope you find neurologist or other consultant with some understanding .
I found this neurologist by chance as went for migraines I'd never had before this deficiency.
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 !)
I can't emphasize enough that what wegewood said is so very true. I dido what wedgewood said. I've tried everything. Only injections help.
You must advocate for yourself.
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
High dose oral supplements can be effective for people but there are a number of people for whom they don't seem to work effectively.
Whilst B12 isn't toxic, there are risks associated with injections - so make sure you know what you are doing, particularly if injecting IM.
If trying high dose oral then its best to start just after an injection and don't be scared to take more than 1000mcg.
Unfortunately the only way to know if they work for you is to try them.
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.
Oral b12 or injections
LOW B12 is not always PA
Oral B12 as effective as injection even in PA patients - does anyone have experience to support this?
Oral (passive) treatment of B12
