One GP at the group practice where I'm a patient (let's call her GP A) recently diagnosed me with and treated me for pernicious anaemia (PA). She described my B12 levels as 'undetectable'. I've just completed a course of 6 vitamin B12 loading doses.
Another GP (let's call her GP B) disagrees. Six months ago, reviewing the blood tests she'd requested I undergo, she told me my B12 was low but could be corrected through diet.
Today, I had occasion to speak to speak to GP B, because my blood pressure is causing me concern and I'd requested a telephone consultation with whichever GP was rostered to make patient calls. I brought the discrepancy in PA diagnosis to her attention. She looked again at my test results and reiterated that, in her view, I did not have PA.
A retired-GP friend has recommended I ask for a referral to a haematologist to settle the score! However, in the meantime, I'd appreciate input from those on this forum with lived experience and acquired expertise.
I note that the 2024 NICE guidance on B12 states: 'The clinically normal level for cobalamin is unclear, although it is thought that serum cobalamin of less than 200 nanograms/L (148 picomol/L) is sensitive enough to diagnose 97% of people with vitamin B12 deficiency.'
My test results are as follows:
02/09/24: Intrinsic factor antibody:
Laboratory comment: positive; possible pernicious anaemia as low B12; normal Hb
02/09/24: Serum vitamin B12
Laboratory comment: abnormal; 148 ng/L (normal range 182 to 692)
04/12/24: Serum vitamin B12
Laboratory comment: abnormal; 150 ng/L (normal range 182 to 692)
Many thanks.
Written by
GillLW
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What I don’t understand is that as your Intrinsic Factor Antibody test was POSITIVE , that the laboratory comment on that result could have been “ POSSIBLE Pernicious Anaemia”That result means DEFINITE Pernicious Anaemia . This means that now , after your 6 initial B12 injections , you should be in receipt of B12 injections FOR LIFE , as there is no cure for P.A. You should have received those 6 loading doses in September. You need B12 injections often enough to keep B12 deficiency symptoms at bay . And no more B12 testing. Ask GP B if she has seen the latest NICE guidelines on B12 deficiency, and read the references to Pernicious Anaemia ( which NICE now call Autoimmune Gastritis — it is explained why ) They were published in March 2024 .
With the positive result of a positive Intrinsic Factor Antibody test , there is just no argument possible . You have P.A. and must have life long B12 injections.
You do not mention that you have a vegan or strictly vegetarian diet , so GP B’s opinion that your b12 deficiency could be rectified by diet sounds ridiculous…….. I hope that you will now be receiving B12 injections regularly . Do get back to us and let us know how you get on. Best wishes .
Dear oh dear. If you have a positive IFAb test, then you have 'Pernicious Anaemia' [old term] and in your case you weren't anaemic, which could confuse the uninitiated. Autoimmune Gastritis is a better term. Of course if you'd been left long enough, you would have developed anaemia, and worse, but you've had some treatment. That should be life-long. You've been the victim of language-mangling! The comment is misleading, confusing, and quite possibly an automated comment that hasn't been seen by anyone until it turned up at the surgery.
I would take it up with the laboratory by whatever means possible, because my guess is you won't be the only one.
I do agree that Autoimmune Gastritis is probably the better term for P.A. . But I don’t want to see “Pernicious” disappear from the name . I vote for Pernicious Autoimmune Gastritis . It cannot be over emphasised that P.A. is a serious condition if it is untreated or even undertreated . “Pernicious” really does underline this fact , though I think some people don’t realise that it means deadly !
Can't argue with that. 'Proper' PA untreated will see you off. [A study in the early 1900s reckoned 3 years.] Some miraculous recoveries were probably folate deficient.
Thank you all for your very helpful replies, and to Wedgewood for the warm welcome!
In the interest of brevity, I didn't mention my symptoms in my opening post, but I can see that this would be useful to give a fuller picture, Cornwaller, so thanks for prompting me to explain further.
In August last year, I had a stomach complaint and, despite there being no change in my diet, unexplained weight loss. This prompted GP B to order blood tests in September and to repeat the B12 test in December.
From November to February, I was suffering from exhaustion, low mood and a succession of winter bugs (flu, then a chest infection, with a cough and a sore throat that persisted for months - I'd barely a day's let-up from one to the next).
I'm 59, a non-strict mainly pescatarian, and post-menopausal. I have a high-pressured editorial job in government. It was difficult to work out whether my health challenges were down to a combination of the season/my age/stressful ongoing family circumstances/my work/the fact I'd spent my brief Christmas break ill and in bed. I expected GP A to tell me the spring would bring relief and to send me on my way! However, having looked at my test results, she explained that I had PA and that this should have been noted and proactively dealt with in September. She said she would raise the discrepancy with GP B (in fact she hadn't to date, so I had to yesterday).
The loading dose of B12 certainly perked me up, Enuffisenuf - I feel less tired and my low mood has lifted. However, I injured myself on the day of the last injection two weeks ago, fracturing my rib cartilage, so I haven't exactly felt the full benefits yet!
The pain from the fracture and the drama and disruption of 2 arduous visits to A&E (plus the 8 visits to the surgery re the PA/B12 injections) while still working to meet tight publication deadlines seems to have sent my blood pressure rocketing! I'm hoping that, once I've recovered from the injury and seen the haematologist for a definitive diagnosis, I'll be in a much better place again. My next B12 injection is in May, which isn't in line with NICE guidelines, being three rather than two months after the last loading dose. I'll be querying this with my own doctor, with whom I've booked an appointment to discuss all of the above!
FlipperTD, would you mind explaining more about your view that 'in your case you weren't anaemic'? I'm not scientifically minded, so your input will be most useful. I shall definitely try to find out which laboratory assesses and likely automatically feeds back on the tests, as part of my ongoing enquiries!
Thanks again, everybody. This is such a helpful resource!
You might find it difficult to get your B12 injections often enough to keep symptoms completely at bay . This Forum was founded,amongst other reasons , to help PA patients to understand the difficulties of getting the correct treatment regularly enough , as we all differ as to how often we need the injections . All of us on this forum need to inject more often than our doctors will allow . Those patients for whom 2 or 3 monthly are sufficient don’t go looking for help on here . The injection ampoules , syringes and needles themselves are not expensive. It is the services of the nurses which is one of the expenses that the surgeries don’t want, as that cost has to be taken from the sum that is allotted by the NHS to the surgeries . What is left over is divied up between the GPs ……… Now GPs are trying to get patients to buy B12 tablets , which are not a viable proposition for PA patients . Don’t get fobbed off with that for goodness sake . You have P.A. and need injections . Your GP B can do such a lot of harm to P.A. patients with her ignorance. She needs enlightening ,and her colleagues should be doing it .
END OF RANT !
We get our supplies of B12 ampoules from German Online Pharmacies , as they are an over the counter item in Germany ( as they should be here!) Needles, syringes etc we can get from UK medical suppliers . This means that an injection will cost about £2.00 ,everything included , self-administered by either an Intra-muscular ( I.M. ) 1 inch needle or a sub-cutaneous 1/2 inch or less needle .You can get instructions if you ever need them , which I hope you won’t need.
IMPORTANT TO KNOW You cannot overdose on B12 — Something else that many doctors don’t know . My GP told me that overdosing was toxic . But couldn’t refer me to any scientific evidence for that, or knew how much was toxic .
You will be amazed how much you can learn by just reading posts on this forum . I really treasure this forum , and I’m so pleased that you are a member .
P.S. You cannot rely on a Haematologist having good knowledge of P,A. Believe it or not I consulted one who told me that he wasn’t really interested in Pernicious Anaemia! I couldn’t believe my ears . I was more or less told that I was wasting his time . but he still took my money ( too long to wait for a NHS appointment )
A Gastroenterologist I consulted had much better knowledge and told me that P.A. patients had either Achlorhydria or Hypochlorhydria . No stomach acid or low stomach acid . This gave me the gastric problems that I was having . All gone due to getting enough B12 injections and taking pro- biotics .
You aren't anemic yet, means your red blood cells are not yet megaloblastic (too big) and can still carry oxygen. You tend to go a bit yellow when this happens and get very breathless, with a high heart rate. Your blood tests should show platelet size. (Though this can be squewd if you are taking folate, which shrinks blood cell size.) This is a late stage, dangerous symptom, it's good yours has been caught early. Vitamin B12 is needed for healthy:
Blood cell production
Accurate DNA replication
Brain and nerve myelin
Protein breakdown and recycling in the liver, high toxic homocysteine results without it
Immune system T cell production
Energy release in mitochondria
Plus many other body processes.
It's a sliding scale as to how much B12 you actually absorb, which is possibly why Dr. B said take tablet form for now. Some of us just drop off a cliff, some slowly decline. But at least you have had a positive intrinsic factor antibody test. Injections are the only way to guarantee it's getting in, that's why they should go by symptoms. If you want to try tablets Igennus do a Super B12-Complex, containing the best 3 forms of cobalamin.
As you've had an injury, you'll need more B12 to mend.
What you do need to do is make sure you are getting plenty of the co-factors that make vitamin B12 work well. Your blood tests should flag up if you are deficient in folate B9, iron - ferritin, magnesium, maybe a few more.
Vitamins D, B1,B6,B9, DHA Omega 3 fatty acid found in fish oil, zinc, magnesium are all ones to top up on. Again, Igennus do supplements in the best absorbed forms.
High homocysteine is worth understanding, as it causes non alcoholic fatty liver disease and it's now being discovered to be at the root of type 2 diabetes, weight gain, arterial plaque, ++. B12 deficiency is probably factor in all forms of dementia. To clear homocysteine B12 works with B9 and B6.
Keep us posted. This forum has made all the difference to me.
Oneash, I overlooked your comment earlier, but wanted to say a big thank you for all of this. I have much to digest. PS Dr B didn't even suggest B12 tablets - just dietary adjustments!
Oneash, I've had an outbreak of cystic acne as a result of the loading injections, and I can see that others on this forum have experienced that too, some for shorter and others for longer periods of time. Would my skin react the same way to the Super B12-Complex tablets you recommend as an alternative, do you think?
My skin has been absolutely dreadful for 3 weeks, since the 5th injection - loads of sore spots under the skin (even in my ears) that come to nothing and take ages to subside. A crop of blackheads on my temples, between my eyebrows, at the sides of my nose and all over my chin that then become pimples. I awake to a new batch every day! 😟
I think your skin, like every other bit of you, will react to B12 in any form. B12 is so important to the functioning of 'dustmen' in our system, clearing away debris of damaged cells, and mending cells where DNA has gone awry. Just have faith that it will pass, and in a while your skin will look way better than it has in ages.
Wow! What an eye-opener, Wedgewood. Many thanks for the info re self-administering injections, if I find I require this.
Yes, I've been reading broadly across the forum and see that many have suffered for much longer and much more severely than I have. I'm not sure what prompted my PA onset - Age-weakened immunity? Reducing my meat and poultry consumption back in 2020? Perhaps I was 'lucky' that blood tests were ordered (though not acted on) relatively early?
My nephew/son (born by my donor egg via my sister) has ulcerative colitis (UC). Might there be a connection between my autoimmune atrophic gastritis (AAG) and his his own autoimmune condition? I see the 2024 NICE guidelines on B12 mention co-morbidity with Crohn's disease, which is similar to UC. I'll need to ask my sister about his B12 levels, if so.
I've read that inflammation in the gut can be a risk factor for developing B12 deficiency especially if terminal ileum is affected. Terminal ileum is where B12 is absorbed.
I don't know about connections between UC and AAG.
It is possible for children to develop AAG.
B12info.com and Pernicious Anaemia Society have some info on childfren.
I don’t know if there is a connection between Autoimmune atrophic Gastritis which is the same thing as Autoimmune Gastritis which are other ways of describing Pernicious Anaemia , and Ulcerative Gastritis , which is also an autoimmune condition . I’ve never heard that mentioned on this forum. Pernicious Anaemia only affects the upper stomach where the parietal cells are situated . They produce The intrinsic Factor needed to absorb B12 and Stomach acid also needed to absorb B12 and other vitamins , minerals etc . These cells are destroyed by the Intrinsic Factor Antibodies.
Ulcerative Gastritis can be caused by Helicobacter Pylori bacteria , which can cause B12 deficiency , but not Pernicious Anaemia b12 deficiency.
This information doesn’t help you really with your question . Sorry can’t help you .
Just a word of warning — Autoimmune conditions seldom come alone. I’ve acquired 3 over the years . First Rheumatoid Arthritis, then Pernicious Anaemia,then Vitiligo ( on my legs , and as I’m a white person, it hardly shows at all ) .. You may be lucky of course and just have 1 - I hope so !
Sleepybunny, I really appreciate the time you've taken in collating all the useful links for me, and for following up on specific queries - what a mine of information you are! I was tested for H pylori and the results were negative.
I never had any problem with high blood pressure until I developed PA. Now my blood pressure goes up to quite high levels whenever I'm under stress. So I avoid it as much as possible. Which is the reason I treat myself. The stress of having to deal with an ignorant yet arrogant GP isn't worth it.
Wow! Make sure you keep getting regular B12 injections. You should get them often enough to keep all symptoms at bay. I don't see where the dr. who says you do not have PA is coming from.
Apologies for such a quick reply...I'm about to go out.
I left very detailed replies on these threads with info I think you might find useful eg symptoms/causes/UK documents to read/links to help those struggling to get treatment/diagnosis.
I post a lot of info so maybe read a bit every day over a couple of weeks so it's not overwhelming.
Some links may have details that could be upsetting.
Search for "Wolffenbuttel B12 deficiency" to find other articles he's written, including one for Mayo Clinic in US and one for BMJ (British Medical Journal).
His most recent article is an overview of B12 deficiency treatment.
Search for "Wolffenbuttel 2024 overview B12 deficiency" to find it.
In my personal opinion he's one of the few doctors who understands B12 deficiency.
4) B12d.org have online talks about B12 deficiency.
I'm going through similar issues. I thought if Intrinsic Factor was positive, that means PA, but I just had a hematologist yell at me that I do NOT have PA and B12 shots would NOT help the neurological damage in my head and it was not, despite how I feel it is, helping the neuropathy in my feet. So I asked this hematologist's Nurse Practitioner to please order MMA, Intrinsic Factor Antibodies, Parietal Cell Antibodies, Homocysteine. So Intrinsic Factor and Parietal Cell Antibodies came back positive, but homocysteine and MMA were normal, but I know I have PA. I've been self injecting since the end of January bc I had a B12 shot and the next day the neuropathy in my feet was gone, but only for a day. So I knew.
Because I was taking methylated oral b12 and folate for 4 years, my B12 labs have been normal or high. Obviously this oral b12 is not being metabolized for use. I'nm self injecting with cofactors and high potassium in my diet.
I am grateful I don't have to count all these doctors who did not have the wherewithal to figure out that my b12 deficiency is killing me, and it should be interesting the next time I see the hematologist when I him, "I told you so." If it were me, I would ignore Doctor B.
Yes, that would be really useful to know, Galeflower! Thanks for your reply.
Sleepybunny, this weekend, I'm going to read through all the info you've shared. I'll be sure to report back with questions and updates! I have a telephone consultation with the excellent GP I consider to be my 'own' doctor at the group practice - it'll be interesting to see which side of the PA/no PA divide she comes down on!
I had already began self injecting b12 before my appt with him. He repeated over and over that serum b12 lab is all we have to test b12. I was shocked that he was unwilling to consider that my labs had been normal or high for almost 4 years because I was taking an oral methylated B12 and folate, but that my neurological symptoms were worsening, thus indicating that the oral b12 was not being metabolized. I still see him because last spring I was anemic and had to have an iron infusion. He said I did not have PA and that b12 would not help my neurological issues. This was BEFORE the tests for Intrinsic Factor Antibody and Parietal Cell Antibody came back positive. He is clearly wrong.
My B12 was high in labs the week before, at 2000, but that is because I am self injecting. His reasoning is illogical. I think simply is one of those people who cannot admit to being wrong. The sad thing is he could have figured this out last year, when I was 3 years in with ongoing neurological damage.
I go back for labs with hematologist April 14th, but I do not see him again until the fall. If I had listened to him, I would have no hope.
I see my PC doctor on Monday. She failed me too. She should have tested me for PA when I found out I was MFTHR. I fear the neurological damage in my head is irreversible. Only time will tell....
Some people find it helpful to keep a symptoms diary. Maybe track up to ten symptoms and score severity daily or weekly. Note any treatment given and any relevant blood test results.
Could be useful evidence of improvement or deterioration in symptoms to show doctors.
It can be hard to see improvement day to day or week to week when treatment starts but perhaps easier if you compare month to month or year to year.
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