Hello! I posted a couple of weeks back with some questions about low B12 investigations and was about to have a very full and detailed blood panel.
I've got some further info from my blood tests. I don't have a copy yet, they're on the way, so I'll have to be vague about actual numbers for some of them. These are the ones he raised....
1. Active b12 right in the middle of normal range
2. Serum b12 - 197
3. Iron - normal
4. Ferritin - 197. He wasn't happy about this and is sending me for a liver scan so now I'm crapping myself. Having said that I've looked at several NHS ferritin (high) ranges and they vary from 150-250 so what do I know. LFT was fine.
5. IFA - negative. This is the second one I've had and the other one was negative as well.
6. Something called gastric parietal cells came back as positive.
7. VitD - 35 (meep - I've been supplementing with 2000 per day since I took the blood test so don't know if this has now gone up).
So this will be referred back to my GP. The consultant has told me to take supplements or jabs and left it up to me as to what I do (it's a private hospital and they don't do B12 shots there so it would have to be referred back to the NHS which he is happy to do for me). I dithered about having shots yesterday when I spoke to him, but this morning I rang back and changed my mind after looking up what parietal cells do. If they're a precursor to PA and can be headed off at the pass, I think it seems sensible to nip this in the bud. He is going to recommend it to the GP but whether that goes anywhere is another matter which i'll have to take up with them.
There are a few "just" out of range readings for haemoglobin/cell size but I've just been diagnosed with another condition which can also cause this. It needs to be fixed independently of this issue but it's obviously not helping. He wants to test again after I've started treatment for the other condition.
I'm doing a BetterYou B12 oral spray in the meantime as at worst it will do nothing so thought I may as well while I'm waiting.
But...asking for shots is the right thing to do, even though Active B12 is fine? The parietal cell thing makes me think I should go for it.
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I didn't - I had to use my partner's private medical cover. When I said "he's referring me back to the NHS" I didn't mean that he's an NHS consultant. I got nowhere with my GP so felt I had no other choice, unfortunately. Even private there were very few specialist haematologists in my area. I've hit lucky with him as he's been extremely thorough, but it's a shame I had to take this route. I can see the cost every time the health insurance company send an invoice and there is absolutely no way I'd have been able to fund it myself.
I’ve been on B12 injections for over 25yrs they don’t last the 12 weeks anymore Only way I can get any help is if I find an haematologist on NHS that specialises in Pernicious Anemia then GP will refer me so not looking good
Parietal Cells are an essential part of the proper function of the digestive system.
They produce the hydrochloric acid needed for digestion of food and protection against pathogens. They also produce the critical "intrinsic factor" protein, the "taxi" that B12 needs in order to travel safely through the gut without being degraded and to be recognised at its absorption site later on at the end of the small intestine ("terminal ileum").
"Autoimmune atrophic gastritis (AAG) is a chronic disease that affects the corpus-fundus of the stomach, and is characterized by the development two types of auto-antibodies: anti-parietal cells antibodies and anti-intrinsic factor antibodies."
While the anti-parietal cell antibodies get busy destroying some or all of the parietal cells, damaging hydrochloric acid output and reducing intrinsic factor production, in a flanking motion, another set of antibodies develop, "anti-intrinsic factor antibodies" which hinder B12 absorption further by interfering with any intrinsic factor that remains, preventing B12 from binding to it:
"Two types of intrinsic factor autoantibodies exist. Type I antibodies block the cobalamin binding site on the intrinsic factor molecule, preventing uptake of the vitamin. Type II antibodies block a different site of the intrinsic factor molecule that is involved in binding of the intrinsic factor-cobalamin-complex to ileal receptors. Both types of antibodies have the same pathological effect, i.e. preventing cobalamin resorption by ileal receptors"
Ha, I like that analogy. Having said that, I don't like the fact that I've tested positive for them. Is what I've read correct - that boosting B12 can clear them out? Or am I in a "boost b12 forever" situation here?
This is definitely making me think that I need shots.
If you have PA/auto-immune atrophic gastritis, unfortunately there is no known cure and you will require injections for life or in some cases, likely where some absorption capacity remains, very high dose B12 tablets, which may allow enough B12 to be absorbed via "passive absorption", an absorption route that is independent of intrinsic factor.
Injections are a safer route and the gold standard treatment due to the absorption problems caused by the antibodies. In the case of neurological symptoms, treatment with tablets would be highly inadvised.
The antibodies are from your own immune system which has become confused and is attacking itself, thus "auto-immune".
Ideally you could smack your immune system across the head and tell it to cop itself on but this is unfortunately not possible.
I've just been googling this and I'm slightly confused, which is why I hate googling health related stuff and try to avoid. So, having tested positive for gastric parietal cells, this doesn't neccessarily mean I have auto-immune gastritis? Is there any way to know if I have or not (or is the fact that I've had two tests for ifa, both of which were negative, a good indicator that I don't?). I can ask the guy when I next talk to him but that won't be for a few weeks now and I'm in a panic, because I tend to panic.
I don't really mind having shots for life if that's what will control the symptoms, I'm just not confident in the NHS to provide them. My surgery do offer B12 jabs but you probably have to walk across hot coals whilst singing the Marsellaise in order to get them and I don't speak French and can't sing anyway.
I'm telling my immune system to cop on to itself right now but it's giving me stink eye so I suspect that's a no.
The test would be for "gastric anti-parietal cells antibodies". It doesn't detect the parietal cells but the antibodies to them (if they exist). Antiparietal cell antibodies are found in >90% of patients with pernicious anemia. However their presence is not specific for PA because these antibodies are also seen in addisons disease, autoimmune thyroiditis, insulin dependent diabates and primary ovarian failure.
Although your IFAB (intrinsic factor antibody) test is negative, it should be borne in mind that, about 50% of the time, those with PA will test negative for intrinsic factor antibodies. My understanding is that the founder of the PA society, Martyn Hooper, tested positive for IFAB only on the third test.
Tests for both B12 deficiency and PA are both quite problematic, unfortunately.
Many patients with PA cannot get NHS to agree to provide injections at a sufficient frequency to treat symptoms because NHS understanding of PA is very poor. You might be lucky enough to be able to do well on the standard treatment regime but many people on this forum do not.
Ok, thank you so much. I know what to ask the next time I talk to the specialist. It's possible he did the anti parietal cells test but I wouldn't have known to even mention it. He may have done it and not mentioned it because it was negative, but I need to know that. They are going to send me the results so that will help.
This is really useful information and I can't thank you enough.
"6. Something called gastric parietal cells came back as positive."
I think this test that you mentioned, IS the test for gastric parietal cell antibodies.
There is not (to my knowledge) a test that is used to detect the presence of parietal cells in and of themselves. You want to have parietal cells, or at least hang onto any ones that remain, since they're an essential component of the digestion system.
The IFAB test may not come up positive and cannot be relied on to exclude PA. However, physicians may become increasingly certain you don't have PA if the IFAB test keeps coming back negative. Have to weigh that against getting a positive result which would 100% confirm PA though. Can be tricky.
Parietal Cell Antibodies are not a useful test for PA because they're positive in lots of conditions besides. IFAb is only useful when positive. Life's tough.
It's easy for me to say 'treat the symptoms, not the test results' but that's the way forward. Good luck!
The last time I sang the anthem was with a French lady, [Veronique] and it was in the reception of a hotel in Amsterdam. Acoustics were ace. I suspect others present may have thought we were mad, or drunk, and both applied to me at the time. I'd promised her that the next time we met, we'd sing it together, and we did. My French is dreadful but we had to learn the words at school, and it's now 'hard wired.' I even know what it means, and compared to 'God save' etc, there's no comparison.
It is absurd that you could get B12 injections in 'beauty clinics' providing you don't need them, whereas if you do need them then it's a prescription. Crazy. Don't give in!
You said that you had just been diagnosed with something else that could have caused some of your borderline results.
If you have autoimmune issues - such as Grave's or Hashimoto's disease (autoimmune thyroid conditions), psoriasis, vitiligo etc etc - this could be an indication for pernicious anaemia to be considered as a possibility. Autoimmune conditions, of which there are many, tend to like company. Yes, Martyn Hooper did have three IFab tests before getting a positive result, so has PA - and also has psoriasis.
Serum B12 at 197 ng/L ? My test result was 196 in 2016 - which meant injections started immediately, as the normal range started at 197. Do not wait for B12 to continue to drop before starting treatment.
Ferritin also at 197 ? I struggled to keep mine at levels preferred by the medical profession (over 60 from GP, over 80 from Oral medicine consultant) and most here have similar issues of low or low-range results. So good this result led to being checked.
Vitamin D another one that often comes in low/ low-range. Mine on prescription as osteoporosis of the spine found.
Folate the other one likely to need help, so hope this was checked - but get B12 up first.
Keep copies of any blood test results - direction of travel can be more useful for early treatment rather than waiting to be told anything is already too high or low. It took me a couple of years to stabilise things in all these areas, with plenty of support and monitoring from my GP.
I tried using Betteryou spray between NHS B12 injections to be able to keep going for 3 months. It did nothing for me and I deteriorated further on this regime. I now find that self injecting every four days is the frequency necessary to keep my symptoms at bay, but we are all thankfully very different in that - and I have been diagnosed with functional B12 deficiency, not PA.
Let's hope your GP will be able to take over management of your condition as instructed by a consultant who seems to be B12-savvy .
Mainly, I wish you well. Not easy to disentangle what is B12 deficiency and what "something else" - even where the "something else" is a diagnosed condition.
Any neurological symptoms need more frequent treatment with B12 injections in order to aid nerve repair. This should be as NICE guidelines advise: every other day until no more improvements possible. That can take a long time.
Yeah I think 197 B12 is low enough for them to pay attention - whether they do or not is another matter. I'm actually more worried about the ferritin at the moment as I'm worried it's liver related which scares me witless. And yet, it's still below some guidelines. Is he being overly cautious? I hope so. I'm post menopausal which I believe can result in higher levels.
I do have another autoimmune condition, actually - rosacea. Yes, it's considered autoimmune, apparantly. And it got really, really bad after I had covid. I've always been prone to it but it went insane early this year. That is now under control and is no longer bothering me, tho.
The other condition I referred to isn't autoimmune related - it's severe sleep apnoea which I've been diagnosed with in the past month. Now, according to the haemotologist this "could" be causing the problem with oxygen levels/cell size in the haemoglobin as he had a lightbulb moment when I told him about the diagnosis. It does muddy the waters somewhat as it also causes brain fog and fatigue, like b12 deficiency. He said that cpap therapy could actually change the blood results (for the better) which is why he wants to redo the test after I've been using the machine for a bit, to see if the mcv or mch or whateveritis improves. I'm glad he suggested redoing them as I don't want to make assumptions and neither does he by the sounds of it.
It makes sense though - you need oxygen in your blood, and if you stop breathing repeatedly that's got to be a bad thing.
When I actually get a machine is another matter - my gp was very prompt in sending the referral but the hospital are taking forever to even book an appointment. I've even phoned them, there are appointments available within the next ten days and I could walk away with a cpap on the day, but the specialist needs to look at the referral and say yeah, get her in. Apparantly this is a done deal if the gp refers and it has "severe" all over it but so far - nothing. I don't want to find £700+ to fund one myself, I'm not King Midas.
It is unbelievably frustrating as I feel this could solve a lot of my other health issues and I just want to move on with my life now.
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