H,Pylori can trigger antibodies to the Intrinsic Factor in some susceptible individuals. These antibodies do not show up in the IFAB test in about 50 % of P.A. patients . So it’s possible that you do have P.A. If you try B12 tablets and they do not help your symptoms , ask for B12 injections . If that fails , come back here for more advice .
I'm going to poster below two replies I've recently left on previous posts. The same is still relevant - in summary,...
1) don't take folic acid or methyfolate (your levels are over the top of the range). Over supplementation can cause side effects and be dangerous, long-term. As before, B12 does not need folic acid to make it work (fuller explanation copied below in previous responses).
2) Treating B12 deficiency is a long-term issues and you have to be consistent with the treatment. It’s not much use just injecting every so often and leaving long gaps in between injections, especially if there are neurotically symptoms. As before, please follow the BNF treatment guidelines for those with neurotically symptoms (every other day until no further improvements).
3) B12 injections cannot cause or worsen gastritis. Do not stop your injections in the be,if that this will help gastritis.
4) whether you have PA or not may be difficult to 'prove' - there are no gold standard definitive tests. The treatment for B12 deficiency and PA are the same (since the treatment for PA is treatment of the B12 deficiency it causes). Another reason to co to use with your B12 injections.
For clarity, I'm copying the previous replies below (because I know how difficult it can be to retain information when feeling so unwell...here’s the first reply...
1) Your increased neurological symptoms are likely due to stopping B12 injections for 17 days.
2) Your GP is wrong. High levels of serum B12 do not cause the symptoms of B12 deficiency. Everyone who injects vitamin B12 have high levels of vitamin in B12 - because huge amounts are being injected directly into the blood stream (mine are always over 2000). All the guidelines state that that once injections commence, it is not necessary to measure serum B12 levels (levels post injection tell you nothing about whether deficiency is (or was) present and can't tell you anything about how much repair has taken or is taking place.
3).Most importantly...the British National Formulary (BNF) - doctors prescribing guidelines - state that those with neurological symptoms (that’s you) should have injections every other day until no further improvement. This can take many months and some even have to remain on this intensive regime to keep well and stop symptoms returning. (Many GP's are not aware of this intensive treatment regime for neurogical symptoms - your GP appears to be one!).
4) You say that your folate levels are 17 - this is at the very top of the reference range (it usually goes to 20 and they don't measure any higher). You don't need to take any folic acid. Over supplementing with folic acid can cause abdominal cramps, diarrhea, rash, sleep disorders - including insomnia, irritability, confusion, nausea, stomach upset, behavior changes, skin reactions, seizures, gas, excitability, and other side effects....including neurological ones (tinnitus being one). Emerging research indicates that long-term over-supplementation with folic acid can cause irreversible neurological damage.
I suggest that you:
A) stop taking folic acid - your folate levels are very high - you don't need to supplement.
B) do your B12 injections as per the BNF prescribing guidelines for those with neurological symptoms (every other day until no further improvement). Be aware that you may feel worse before you feel better (to do with neurological repair but nobody really knows why).
C) Keep going with that regime (alternate day B12 injections and NO folic acid) and don't change anything (constant changes make it difficult to assess how things are going).
D) Monitor symptoms by writing a symptom diary - it's easier to look back and see what’s changing - and what symptoms are getting better. Repair of the nervous system takes longer so these will be the last symptoms to get better.
Print this reply so that you have it to hand and can remind yourself of the main facts - it’s all to easy to forget when we feel so ill - and there’s a lot of nonsense written about vitamin B12 deficiency and it’s treatment (especially by some of the Facebook groups - sorry to say.
Just know that repair and recovery can take a long time, especially if the deficiency has been present and untreated for some time.
There are some here who have reported improvements as much as two years after treatment has commenced but be aware that long-standing untreated B12 deficiency can result in some permanent damage. But you’re not at that stage yet - just keep up the B12 injections and monitor symptoms carefully so that you can take heart when you start to see improvement.
A few days ago you posted that your folate levels were 17 - and many respondents (me included) suggested that you do not need to supplement with folate since your levels are so high. That, in fact, some of your ongoing symptoms may be due to over-supplementing with folate (which can cause long term neurological problems / potentially irreversible damage).
When you were folate deficient, your GP prescribed folic acid - which has worked - your levels have risen and you no longer need to supplement with folic acid.
You say no improvements - the improvements you’re looking for are improvements related to the B12 deficiency. And, as discussed, these take time - perhaps many months.
We have already discussed the fact that you do not need to take folic acid just because of having frequent B12 injection (to make B12 'work').
Suggest you don't take any folic acid (methylfolate included) unless your GP has tested your folate levels and they’re low again (this will not have occurred so soon after having such high levels). Also be aware - some react very badly to methylfolate - it makes some people feel very ill indeed).
Please can you be aware that this forum is for sharing and exchanging experiences and cannot take the place of professional medical advice.
It's apparent that you're having lots of health issues and so it would be in your own interests to discuss these with your GP - or a different GP if your current one is not helping you. Some here have changed surgeries before managing to get a decent GP.
I'm going to turn off replying to your post because it’s all to easy for forum members to reply - not knowing your history and previous posts - and advise you to take folic acid or methylfolate. Or offer advice that may not be applicable or appropriate in your case (we're all different and what works for one, doesn't always work for another - which can sometimes result in what appears to be confusing advice given by forum members ).
Please remember the BNF treatment guidelines for those with B12 deficiency and neurological symptoms - every other day injections until no further improvement. But also remember that there are other health conditions that can present with similar symptoms - so if the symptoms don't improve, please consult with your GP.
Good luck.
The advice from previous posts is still relevant Milley2. I'm really sorry that you’re still suffering.
As before, it’s vital that you continue with regular B12 injections (as per the BNF guidelines for neurological symptoms - every other day). This will not cause or worsen your gastritis. I recall that your GP was treating you with PPI's post treatment for HP but that you were having issues with the PPI's - in which case it would be wise to consult your GP again so that they can help you with the symptoms of gastritis.
Forum members are relay keen to help people but advice here is based on personal experience and cannot replace professional medical advice. You've been unwell for quite some time now and it’s clear that you are struggling so, please can I urge you to re-connect with your doctor so that you can get approbation medical advice based on your medical history.
Advice given here can be potentially confusing (because it’s individual and what works for one doesn’t always work for another) and I'm conscious that you may be inadvertently left advise that is not suitable in your case (for instance, some may advise you to take folate without realising that your levels are way over the top of the range - and that you should NOT take folate, or methyfolate).
So, to save you being given potentially contradictory and confusing advice, I'm going to turn off replying . Please read the above - it does respond to your questions and advises the best way for you to proceed.
Please can I urge you again to see your GP - difficult though that is at the moment. You have been unwell for some time and need (and deserve) appropriate medical care and advice (something that is beyond the limits of 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.
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