I have been suffering with low iron for years and have been on iron tablets but has never seemed to improve it. Now my b12 has been really low since having my second child 3 years ago. I am constantly tired, feeling weak, dizziness, tiredness, difficult sleeping. Because my b12 is low i keep getting sores in my mouth which drags me down. I am still arguing with my doctors to get to the bottom of what cauaing it. I do have heavy periods which dont help. Any advise on whether it could be pernicious anaemia?
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Joules87
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Do you know how low your B12 Reading is ? If you don’t , ask for the printed results - you are entitled to the print-out .Mouth sores are one of the many symptoms of P.A. as is extreme tiredness , which it shares with many other conditions . Knowing your B12 result would be useful to know for a start .
That’s a strange result . If it means zero , you should have been given B12 injections immediately. ! You do know don’t you that you can ask for a print out , and they are obliged to give one . So tell us when you know . Also you should be having an IFAB fest ( intrinsic Factor AntiBody test . If positive , you have Pernicious Anaemia. If negative , you could still have P.A. , as that test is unreliable if negative, and about 50 % of negative results are wrong !
Thank you will post tomorrow when they tell me and get print outs of my last blood tests. There is a history or pernicious anaemia in the family and thyroid problems too.
When the IFAb test comes back as negative, it's not 'wrong'; it's 'Negative!'
Errors can occur in any procedure and may result in an incorrect result, and that's 'wrong'; that's not the same thing at all.
If the test doesn't detect an antibody-like effect, then it's negative. Pure and simple. Irritating and not helpful, but as someone once said 'we have to follow the science'! The Schilling test was much more helpful, much more expensive, much less suitable for widespread use and still not 100%, as it was open to all sorts of errors, but it's now consigned to history, but IFAb tests are still here with us.
Diagnosis is as much an art as a science. If a positive IFAb test can provide the diagnosis of PA in perhaps 50% of cases, then that gives the clinician more time to concentrate on the others.
Trouble is that the “negative “ outcome of the IFAB test often results in patients with Pernicious Anaemia not getting the treatment they need because doctors interpret that as them not having P.A. So it is much more than “ irritating “ , as you describe it .
The upshot of that is tragic . Why are doctors not educated about this possibility ? I’ve no idea .
My heamatologist told me I did not have PA because I hadn't had an IFAB test. Not that I'd had one and it was negative, but that I hadn't had one at all.
As a secondary test to determine the cause of B12 deficiency, it is a poor one.
So poor that a haematologist told Martyn Hooper that the test "nearly always comes back negative", Martyn himself had to have three tests before being found positive, and the BCSH don't believe that it rules out pernicious anaemia if negative.
So unless your GP is willing to give you a "best out of three" chance, it is hardly worth testing at all !
Your hematologist needs to read a book, fbirder
"False negative" all you like, FlipperTD , to me it's just a wrong'un ! I'm with wedgewood : we deserve better diagnostic tools than this.
My heamatologist got me full force. I was a little bit miffed (in the days before I controlled my irritability that meant Defcon 3). But I kept my voice calm when I asked him to explain my undetectable level of B12, my gastric parietal cell antibodies, my metaplastic gastric atrophy - restricted to the fundus and corpus and mu hypergastrinaemia.
As a scientist, my aim was to provide trustworthy test results in as timely a manner as possible. I write this from the scientist's viewpoint, so I might drone on a bit!
The Schilling Test was a good test but with lots of potential for error and a very considerable cost. We could perform perhaps two of them a day. The most popular version of the test was the DiCoPac. This used vitamin B12 labelled with two different radioisotopes, and also a supply of Intrinsic Factor of 'animal origin' [ie not human Intrinsic Factor].
The IFAb tests were much more suitable for large-scale use because they were either semi- or fully automated. From first finding a low serum B12, it took realistically several months to get a Schilling Test result because the test is performed on patients with normal B12 stores, and this can take some considerable time. In addition, it required a 24 hour urine collection. The reported results were generally easy to understand, but it was consigned to the annals of history many years ago.
From finding a low serum B12, it was possible to automatically perform an IFAb test the same day and report that back to the requesting physician, with advice where required. With the best will in the world it was not possible to ascertain what action, if any, was ever taken by the clinician on the result.
A negative result in a patient with a low B12 level is not a 'false negative'. It's negative on that patient, on that sample, at that time and is generally repeatable; the test may not be perfect but it will be precise. Over time, a patient may develop a positive result, but the timescales and circumstances are difficult to guess. Patients with sub-normal B12 results need adequate treatment whether they have IFAb or not.
If we lived in a perfect world things would be so much simpler, but we don't... Here's a bit of the science!
Parietal Cell Antibody tests are very sensitive but not specific, so they'll come up positive in lots of conditions including PA, so a positive result isn't that helpful.
IFAb tests are very specific, but in some ways not that sensitive; they'll come up positive in about 50% of all cases of PA, but false positives are rare.
Lots of PA cases never have demonstrable IFAb. The diagnosis of PA is a clinical one, and that's what your doctors are there for. It's probably more important that the condition is treated, whatever is causing it, because a deficiency of Vitamin B12 is bad. If oral therapy works for someone, that's easy. For the others however, injections are usually the answer. If in doubt, discuss it with your doctor. That's why we pay them.
PAS is a great site with lots of knowledgeable folks, so use them too!
The problem with PCA is that they're found in a large number of conditions, so it's not specific for PA. But guessing about 'what does a negative result mean?' is not something I would be happy doing. Sorry if this seems evasive!
I have discussed it with my doctor over 20 months.
I fled her outright what the cause was. She said dietary. .so why dont tablets work?
Alot of us ask away but dont get answers.
So thanks for smythe science
I understand 5o% of people get a diagnosis from IFAB test which is better than no test. As a positive test is very accurate.
For those of us that rely on b12 injections it turns out to be more precarious as some doctors as is happening now in some surgeries have stopped b12 injections for those without PA .
I agree it's far more important to get treated.
I had to fight for my treatment.
So just wondered if yiy had a better u understanding what a neg. Result field PCA test means.
Is it possible you can still have PA ? Is it 50% the same as IFAB
I'm just interested . My gps know little about it.
I'm not sure that Martyn Hooper would agree that on the first 2 occasions, he was not yet producing antibodies, but by the third time, this had altered.
It also doesn't make sense that a haematologist would have told him that the test results are nearly always negative - since only those with low B12 in the first instance will be tested, this is surely not the expected result.
Patients with sub-normal B12 results of course need adequate treatment, whether IFab positive or not, but it would not be surprising if those patients would like to know the cause of their condition - especially if this could provide proof of pernicious anaemia. Their families might also have an interest in the result.
Reduction of cost, time and increased automation might well be a good thing. Improvement on accuracy of results would be preferable.
Please bear in mind this is a scientist's answer, and does not purport to be clinical advice!
Without knowing more of the facts about this it's not possible to comment.
It's established that Intrinsic Factor Antibodies are detectable in approximately 50% of PA patients, and this has been shown in numerous studies. [Sorry, I no longer have references or data to hand to support this]. This is clearly at variance with the haematologist's opinion.
You are correct in your supposition that those with a low B12 would be tested for IF Antibodies. In general, it is unlikely that the test would be requested on patients with no demonstrable deficiency or history. Whilst the test is considerably cheaper to perform than the Schilling test, it's not 'free', and the NHS is under enough cost pressure already.
The test is specialised, and certainly was not performed [in my time] in all laboratories that measured Serum B12; in many cases, it would be referred to another laboratory for analysis.
Sorry to harp on about this, but it's really not a question of 'accuracy of results'. When the antibody response is not demonstrated in the test, then it's negative.
It would be interesting to know what time elapsed between Martyn Hooper's second and third IFab tests. How long it took him to become positive from negative.
Most people would not get more than one test, since many GPs would see one negative result as conclusive. Plus, as you say, tests are not "free".
It would also be interesting to find out what the haematologist meant exactly when he said that tests are "nearlyalways negative"- 70%, 80% ?
Certainly unlikely to be 50%.
All experiences are valid: your's, the haematologist's, the founder of the Pernicious Anaemia Society's.
Those with pernicious anaemia either do not produce intrinsic factor or their intrinsic factor is destroyed by antibody production (autoimmune pernicious anaemia). What percentage of those with PA have which (also unlikely to be a 50-50 split) - that is a question that warrants an answer - but if you don't test enough, you don't ever find out.
I agree it would be interesting to know what time lapsed between the tests. If when he was first diagnosed and 'it had only just happened' then the appearance of antibodies can be a moveable feast, and the production of antibodies must start somewhere, and at a low titre. The problem with the IFAb antibody test is that, unlike many tests, there isn't a purified substrate to test against. Likewise, there are different antibody types; so-called 'type 1' and 'type 2'. Sometimes broad-spectrum rises in antibodies can be seen due to a generalised reaction to something else too.
I wonder if the haematologist was simply reporting his own experience?
I agree that there's always scope for more research, and it would be interesting to know quite how many patients there are with antibodies, and, of those, what sort, and how much' although it will be argued that it's more important to get patients treated, regardless.
There is a school of thought that says 'if you start them on injections from the nurse, then you've sorted it out, and compliance is assured, whereas if you give them tablets [if they work] how do you know they're taking them?' Certainly in the past, if someone had been written up for B12 injections, it was unlikely that anyone would ever review them.
That seems to be changing for whatever reason, but if things are changed then they should be changed for the right reason!
As for testing, the current Covid 19 situation and arguments for and against population screening are never-ending, and there's no simple answer.
I cannot imagine how anyone needing B12 could either forget to have injections/ decide against them, how they could cope at all without them. For many, the need is for more than they are getting, not less.
Tablets however might well be ditched, as useless- and self injection the only remaining option.
It seems that most reviews lately are serum tests for B12 levels ( not recommended after treatment is started but performed anyway) and then treatment stopped because it has "worked" (ie serum B12 level very high).
Again, leaving self injection as the only remaining option.
Especially lately, when the excuse is used that you cannot test folate without testing for B12. This may have originated in order that a B12 deficiency doesn't go unnoticed - but now seems to be used as a reason to stop giving B12 injections when high levels detected, long after treatment has started.
It is also not true, since my GP manages to test for folate, ferritin, vitamin D and thyroid, which do need monitoring, without bothering with B12, which doesn't.
"Don't test without patient's knowledge or consent, except in emergency situations" would also be on my list. For the sake of transparency and trust.
At his point I'm going to sound very old. I go back far enough to the point where B12 was measured on [frozen serum] samples one day, and folate measured on another day. What was requested was performed, in the days of completely manual methods. Results would be issued eventually; typically one to two weeks after requesting, and inevitably, if the result hasn't come back, the requester sends another one in, so we may have had two, or three, from the same patient, potentially in the same batch. Likewise for folate. However, as technology changed, then combined B12&Folate simultaneous assays 'Simultrac S' was one, then you automatically got both regardless. From the discriminating point of view, a previously unsuspected macrocytic anaemia could equally be either, so it was logical, and straightforward to perform. Then time moved on, and the assays changed again, and once more, they were for individual analytes, but 'B12 & Folate' was a standard request regardless. By now, the workload had expanded massively, and it was all on to get the samples tested. Of course, most of the results were completely normal! I agree that intelligent requesting, and informed consent, should be absolutely mandatory. [It still if for some investigations.] Most laboratories would nowadays find it easy to perform individual assays, but there would still be some cases where only one test was done and found to be normal, and another that could have been done, was missed.
There's no simple answer, but I agree with you! Performing an unneccesary test [post-treatment B12] and then acting totally inappropriately on the result, is inexcuseable.
If your B12 is that low then it doesn’t matter what the cause is, you need to have injections as soon as possible. Get them arranged tomorrow. Delay will cause nerve damage.
If you aren’t vegan then you almost certainly have PA. However, there is no guaranteed test for it.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies.
I wrote some very detailed replies on another forum thread with links to B12 deficiency symptoms lists, causes of b12 deficiency, info about tests for PA, more B12 books, more B12 websites, UK B12 documents, letters to GP about B12 deficiency and other B12 info which you might find helpful.
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