I’ve had the most frustrating appointment to date where she has (un)helpfully told me that she doesn’t know how safe EOD injections for “such a long period of time” is and that she wants me to start exploring other avenues for treating my symptoms. When I asked what she meant by that, she said counselling.
So frustrating, when I’ve had crashes from both physical stressors AND emotional stressors. I could maybe understand the psych avenue if there were only emotional stressors impacting my symptoms. But the physical stressors are all things that, up until this year, I’ve been able to enjoy.
I should have offered to do a bloody mental health assessment there and then. Do I get stressed? Yes of course. Do symptoms coming back make me anxious? Yes of course. But I am still managing my life and not feeling completely overwhelmed by all of this (except when I have dumb appointments). Also, I have already engaged with a counsellor earlier this year and she ended up discharging me (with an invitation to come and chat if needed but didn’t feel like I needed more regular appointments). I told Dr F this and she was a bit startled.
And then the report from my scopes came back picture perfect (which is amazing news) but now she’s saying that obviously there’s nothing impeding your B12 absorption so I want you to trial oral to see if you can avoid injections.
I’m so glad I manage my own injections because I don’t feel like she would’ve given me a choice about it otherwise!
Can you have PA without damage to the stomach?? Is that a thing? Clear endoscopy/gastroscopy?
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oh and she also said that because I’ve done so many injections for such a long period of time (EOD since June), then I should be fine to keep those levels up with oral.
AND if I get symptoms returning on the oral tablets, I should just go back to injections “since you’ll probably do that anyway”.
She implied that only oral B12 gets excess peed out and that all of the injections get stored in the liver.
I fully understand - my GP hasn't been 'in my corner' at all but when I paid to see a specialist I could have cried as he confirmed what I knew was wrong with me. Just to be listened to and know help was coming! In the UK it seems to be the norm to be dismissed in relation to B12 deficiency.
Around the time I saw the specialist I would be sitting at my work desk and suddenly be in tears, for no reason. The emotional impact of all this is not to be ignored but you know yourself better than anyone. You certainly don't want to be experimenting with oral B12 when you've come so far! Some of the 'facts' your GP stated are plain wrong. You know that you have an army of supporters on here 😊
Thank you! I told her “surely I’m not the only one that has needed more B12 than the ‘standard practice’!” But apparently I am the only one she’s come across 🙄
“All my other B12 patients come in every 3 months for their jab.”
So I tried Cherylclaire ’s line of “well how would you know if they were doing it at home on their own?” And she was a bit taken aback but still kept to her “let’s try oral” stance.
But you gave her food for thought - and she will return to that later, as a possibility not previously considered.
I was the only one given two injections a week for six months, I'm sure. The nurses seemed wary/suspicious/appalled - or, at best, concerned. My GP asked me if I wanted her to talk to them about treatment - but given they were doing the injections, I decided against GP intervention !
I think some doctors can see what is happening, but if it goes against what they have learned/ believe, difficult to justify in practice. The foreword to Martyn Hooper's book, from Dr Chris Steele (from This Morning, ITV) begins:
During my 45 years as a GP, I have often felt uneasy about the way in which pernicious anaemia is diagnosed and treated. This uneasiness has troubled me when initially investigating patients who complain of tiredness.
And continues:
.....I have felt a similar uneasiness when an affected patient has presented saying that he or she is still feeling tired despite receiving regular B12 injections, either self-administered or by way of the practice nurse.
My GP ended up being very supportive, having sent me to specialists to ensure there was nothing (else or other) missed. When I started self-injecting EOD, still trying to get a return to work, she continued to monitor all else except the B12; "Pointless."
Being singled out as different is fine, as long as that is an observation not a judgement. Pointing out that you might not be as different as they believe ? Worth considering.
If you have PERNICIOUS ANAEMIA. , B 12 that is stored in the liver is no use to you at all . It enters the stomach just like food does and will need the intrinsic factor to be absorbed, which you won’t have .
That’s the thing, I don’t have a diagnosis of PA - two IFAB tests came back negative. And now with the scopes coming back clear…?
Below you mentioned that you can’t have PA without stomach damage - so in order to have PA, my scopes should have come back with evidence of damage/gastritis?
None of the other B12 deficiency routes fit - not drugs, h.pylori, alcohol, weight loss surgery, PPIs. I don’t understand how I can have malabsorption otherwise.
I think it's called functional deficiency - beyond absorption into the blood, but furher on at cellulsar level. Often related to gene defects. So, unless your doctor is prepared to do a full genetic profile, looking for known (and yet to be discovered!) defects she has not investigated far enough. As getting tests such as MMA and Active B12 for Pernicious Anaemia is such a big deal, don't expect help re gene test!!
Very recently our wonderful Wizard posted a link regarding recent research on Adult Onset type C deficiency. It took flooding the system with 25,000 mcg injection every week to/get enough B12 absorbed at cellular level.
May be worth showing this doctor the conclusions of that research paper!!
I will put functional deficiency on the list of things for next time. It’s been on my mind but because my levels weren’t tested once we started injections (one of the few things the GP did know), there’s no way of proving that is there? Beyond symptoms? It really wasn’t until I pushed to go back to weekly that symptoms started easing more. The “loading” doses were once a week for three weeks and then I got moved to once a month. Funnily enough, it wasn’t sufficient. After going back to weekly, I asked (and she approved) for me to do them myself at home. That was when i trialled the EOD and found how much it helped.
To me, that doesn’t prove functional deficiency so much as insufficient treatment?
The probands of the study I referenced was specific to having a specific genetic condition. So it might not be a good idea to use it to sway a doctor.
In that study the probands were administered 25mg of hydroxocobalamin per day.
I found the study helpful in designing my trials. The study of genetic defects related to B12 is ongoing and are now no longer considered rare by those current of the results of that study.
The (.5mg/kg/day) of hydroxocobalamin aligns with the the most effective trial I have done to date although not equivalent.
I have had to mentally broaden my definition of PA to “any potential impediment to the absorption or conversion process both from known medical causes…and those that are still undiscovered”. I too am clear on all scopes and blood tests…but alas…here we all are. My hematologist didn’t know that stored B12 presents the same issues. At least we all have each other 😊
Yes , thank goodness that we have eachother . I thought that I would go mad when dealing with my doctors ignorance of PA ( when I didn’t know it was ignorance ! ) Just get really angry now when I read on this forum about what fellow members are experiencing.
You have evolved a very good definition of PA . ……. 👍
Thank you, I have given her quite a few journal articles (Wolffenbuttel) and PAS articles to read but it currently doesn’t feel as if she has read them
Well the NHS. organisation called N.I.C.E. ( National Institute for Health and Care Excellence) guide lines issued in March 2024, now refers to Pernicious Anaemia as “Autoimmune Gastritis . “ Gastritis definitely causes damage to the stomach . So no you can’t have Pernicious Anaemia without stomach damage . ( Antibodies attack the parietal cells in the stomach , which produce The Intrinsic Factor , needed for B12 absorption, and also stomach acid for the same purpose - for all other vitamins, minerals and trace elements .
But with correct treatment , that damage can be allayed i.e. sufficient injection's to keep symptoms at bay , measures to treat the stomach with great respect and care . . — Probiotics ( in food or tablet form ) , smaller meals taken more often . Chewing well . Using acidic drinks with meals , or taking Betaine HCl . where appropriate.
Here in U.K. if we cannot get sufficient injections to keep symptoms at bay , we are obliged to obtain B12 ampoules from German Online pharmacies . In Germany B12 ampoules are an over the counter item , freely available , unlike here in U.K. .
We all have to find our own salvation , as doctors do not . We are all different and will need different measures to insure our good health and well - being . Best of luck to you in Australia .
But they are calling Pernicious Anaemia. “ Autoimmune Gastritis” ! I
So that must be a different condition. Or is that a quirk or a strange anomaly like people can have P.A. but still get a negative. test for IFA.? ( in about 50 % of tests ) I suppose it can happen the other way round . ….
Pernicious Anaemia / B12 deficiency is so under-researched . . That’s why it’s such a struggle for us . You put out such useful information Thank you .
The Pernicious Anaemia Society website has a couple of blog posts about the name, my understanding is that NICE got it wrong because pernicious anaemia is the term they used to describe the actual anaemia in the blood ie megalobastic anaemia where the blood cells are large due to severe b12 deficiency and that deficiency if untreated would be fatal ie pernicious. technically if you are no longer anaemic then their argument is you no longer have a state of pernicious (megoloblastic) anaemia. The problem is that in the U.K. and other countries we also call the autoimmune condition which attacks intrinsic factor “pernicious anaemia” as the cause of the b12 deficiency . So how I look at it, is that you still have the autoimmune condition which causes the underlying problem absorbing b12 which is called PA but you, if treated, don’t have the end state of the deficiency causing the actual anaemia.
Well that’s how I understood it in a less brain foggy day!
So I don't have Pernicious Anaemia now I have Autoimmune Gastritis? 😂😂🙄
It’s appalling to see pernicious anemia (PA) now being reclassified as simply autoimmune gastritis. PA is a serious, complex condition—not just a stomach problem. It’s as if a broken leg were being downplayed as a mere scratch, with the “treatment” being a band-aid. This reclassification feels like a cost-saving move that undermines the real impact PA has on patients’ lives.
Doctors understandably follow the guidelines they’re provided with, trusting that the experts have given them the best course of action. But with limited appointment time, often just five minutes, there’s little opportunity for us to be heard. When we try to express our need for more B12, it can come across as hypochondriacal, as though our symptoms are “all in our head.” The truth is, we need our voices acknowledged and our condition properly understood—PA deserves the recognition and treatment that reflect its true nature.
I doubt. that doctors will know that NICE has “rechristened”Pernicious Anaemia to Autoimmune Gastritis , because most of them don’t read the guidelines . …
'So no you can’t have Pernicious Anaemia without stomach damage'A quick question - I have just had an endoscopy and biopsy; results all completely clear; no damage, no gastritis.
I had positive intrinsic factor result 7 years ago so diagnosed with PA and so with no damage what does that mean?
I have just found this which helps to explain the difference; it also shows why some of us with PA do not have anaemia at diagnosis:gpnotebook.com/en-GB/pages/...
It might be of no direct relevance, but autoimmune gastritis is not the only cause of low/non-existent intrinsic factor. The original poster has asked Can you have PA without damage to the stomach? - this is my attempt to provide some fragments of an answer.
Why on earth the focus shifted from the inappropriate term Pernicious Anaemia to Autoimmune Gastritis, I cannot fathom. Surely the key issue is inability to absorb B12 - probably due to inadequate intrinsic factor - however it comes about?
I think I’ve been more startled/thrown by the shift in support from the GP. Previously she had been so helpful. And I thought she was reading the scientific journal articles I’d given her (she said she would!) but given what she said yesterday, it certainly didn’t sound as if she’d read The Many Faces of Cobalamin Deficiency!
I’ve only heard very briefly about Imerslund-Gräsbeck syndrome. I suppose genetic testing could be a way forward, despite the solution/treatment remaining the same 🤔 I think the main reason I’m determined/hopeful for a diagnosis is for future support and medical assistance. Without a diagnosis, what happens if I’m in an accident and in hospital for a length of time or when I’m unable to care for myself at an older age?
I stuck to one G.p after going through 6 at the surgery .She too got exasperated and had alot of peer pressure fit not following 'guidelines ' but following me.
She hit alot of brick walls.
I had alof of tricky consults.
Statements lije she coyjdnt hrlk me if I refused drugs ( antidepressants)
Oral b12 trials ( to reduce injections it replace ) agreed .
She also said .
"You will get yourself better "
So good and bad .
Try not to be tok disappointed by one bad one .
Move on.
They were mostly face to face .
Over a period of about 3 years.
I stuck with her though as others were awful.
Most convinced I was a menopausal neurotic women.
Totally dismissing how ill I was .
Bloods apart from very low b12 showed nothing.
So once b12 repeat j must be mentally ill.
They just didn't have the knowledge.
The chosen one despite difficulties was trying.
Most G.ps want their backs covered if prescribing is 'off licence '
Done all of the time.
However not accepted / done with B12 by many doctors .
Even when a consultant has requested a more aggressive b12 regime.
It's not 'common ' practice.
Madness but heavy drugs covered by all the research and vigorous testing .
Oh! I am crying with you! What a savage disappointment 😞 When you have had your cry, try to remember that you are not alone - evidence of which is right here on this forum xo
Well done for entering into the discussion and asking tough questions of her! Maybe she will get unsettled and curious, and start questioning what she understands ( or doesn't understand as the case may be).
My gastroenterologist has requested cardiac, respiratory and neurologist referrals for me for the same reason- because my stomach showed no sign of PA. I'm going with it in case there is something else going on as well, but I fully expect the psych referral to be imminent.
Someone on this forum suggested that the stomach needs B12 to repair the damage so of course if you are bypassing the malabsoption then your stomach will repair and hence appear healthier. I am going with that, but at the end of the day, you know you have a deficiency and how to treat it so keep going. Thrive, don't just survive!
I do understand your concerns about when you may have to rely on others to administer the jabs. We need our NOKs to be well informed to intervene on our behalves if it comes to that.
Stay strong and focus on being well for yourself and your loved ones 🫂
Thank you! I really appreciate your kind words and support. Definitely want to thrive and not just survive
I also accepted all the other tests and referrals because of course let’s check and rule other things out! The neurologist even put in a blood test for syphillis because of its propensity to cause lesions in the brain. I emailed him and requested he give me a heads up about test requests like that because when I saw the code on the form I nearly choked.
I fully understand how you must feel. Please cry it out and then get up and carry on fighting. You must and we must all do that. We are all with you.
I had a gastroscopy yesterday and apart from finding a hiatus hernia (I never knew I had!) and their disbelief that I have never suffered heartburn - apart from in late pregnancy - my stomach looked “normal” but the biopsy results will take up to 4 weeks.
I am braced for a battle as PPIs were mooted to deal with the hiatus hernia and yet I told them I can only eat without getting severe IBS symptoms if I take Betaine and Pepsin with a meal to artificially raise my stomach acid level.
So whilst I was told no visual signs of stomach cancer which has been my worry for the last couple of years, I do wonder whether the results will be a double edged sword?
What is normal anyway? All I know as a fact is that to have a functional enjoyable life I like you and many others on here need B12 far far more frequently than the medics seem to think we “should”.
You did exceptionally well in your replies to your GP - I have banked some should I need them too - well done and lots of hugs.
Thanks Wwwdot - health is so fragile isn’t it? I’ve taken it for granted all these years!
I hope your treatment for the hiatus hernia is helpful and not harmful to what else you’ve got going on. A delicate balancing job!
Thank you for your lovely encouragement! (I need a quote book to take into appointments. I often jot notes on my phone but panic at confrontation and think of all wonderful things to say afterwards!)
Yes I think I need a notebook too as I often find my tongue deserts me when I need it most!
I am not planning to accept any”treatment” for the hiatus hernia because I have no symptoms of it at all so it can just remain - my view is that it has never bothered me so clearly does not need to be “fixed”! It could have been there from birth as I have always had low stomach acid I suspect looking back at what I could and can still eat without any high stomach acid symptoms.
Health is indeed fragile and I did take it for granted but I now know it was a case of ignorance is bliss. But now I know what’s wrong and at least I can live my best life as a result.
Great post and glad you are bouncing back after that below the belt blow!
I have always been able to eat lots of acidic food like fruit juices, fruit puddings and once older cider (!) with no heartburn at all u like the rest of my family. but I have always found it hard to eat protein without getting stomach discomfort. Vegetables were always easiest for me to eat.
I also rarely felt hungry and. Ohms not over eat - apparently stomach acid stimulates you feeling hunger from your gut. I always had hunger symptoms as lightheaded feeling due to low blood sugar. So I have always eaten daily because I had to but even as a young child I struggled to eat breakfast or lunch - now I am older I know why and I still generally only eat one meal a day.
Oh wow….I've never gotten heartburn, even with acidic foods. Do you burp? I think I can count on one hand the amount of times that I’ve burped in the last two years (it’s been a thing since at least adolescence and I’ve suffered with iron deficient anaemia since then too).
I havent had iron deficiency as such but my serum ferritin is hard to change it’s around 90 ng/l (think that’s the unit) regardless of what I eat or supplement.
I did a home test for low stomach acid -taking 1/2 tsp bicarb in some water first thing in the morning on an empty stomach- apparently with reasonable levels of stomach acid you should burp in 2-4 minutes - it took 14 minutes before I burped.
I really feel for you. I tested negative for Intrinsic Factor twice. Not had a scope test. My b12 levels dropped to bottom of the range. I had lots of neurological symptoms which had me shaking head to toe, could varely walk.......my b12 jabs are daily self administered and my neurological symptoms are now mild after 4yrs. My new GP surgery stopped my b12 jabs claiming insufficient clinical evidence.....not sure what they meant. My nhs neurologist got them reinstated.B12 uptake and recycling is a complex system and the mechanism to diagnose what's gone wrong where in that system is limited. It involves far more than thr starting point of absorption from the tummy. PA is one consequence but not the only cause of b12d ......this seems to be something your GP is oblivious of. I thought the new guidelines mentions this and doesn't just focus on PA. Have I misunderstood.
Even so both ny thyoid neds for hypothyroidism and my b12 injections were stopped....by a new GP Practise. B12 jabs I got back.....thyroid meds an on going battle. .....so moved again.
I have very little faith in the nhs anymore and feel it's increasingly designed to make me ill rather than well.....but that's just me.
You are not alone. Keep fighting. Is there another GP who might be supportive??? Or was she the only one?
You definitely haven’t misunderstood - we should all have MD after our names with the amount of research performed in here!
I’ve had brief run ins with other doctors at this surgery and she’s one of the better ones. I’ll keep my ears open but she’s been treating me since the start of my messy year and it would probably be more frustrating to start fresh and have to explain all the tests/symptoms to a new doc rather than have them witness it. I was a mess and she’s seen the results of the intensive B12 I advocated for so this just felt like a real left of field appointment/discussion!
Thankyou wwwdot. 😍 Must admit after 8months of no thyroid meds I feel broken & emotionally I'm like a roller coaster.....all over the shop! Anyway new GP surgery app to.orrow....they seem really nice. fingers crossed. 🤞🤞🤞🤞 Could do with a change in luck!!
We went through similar with my hubby - he was struggling but NHS GP was totally disinterested so we had to go private and within 3 months I had sight of my hubby again. It’s shocking that both me and my hubby find ourselves needing health care that the NHS refuses to give us. C’est la Vie!
I sincerely hope that you find support as there are gems out there - we just have to kiss a lot of frogs to find them !
Yes it's totally bonkers! I feel angry that a treatment that works well & have been on for now 17yrs could just be removed just like that! That with a straight no from a GP practise!! With nothing else that works in place. Just deliberately causing harm.....fully aware of what they were doing.
They stopped my thyroid treatment for hypothyroidism that I've been on for 17rs. The b12 jabs they also stopped (at the same time). I've been on them for over 4years. Moved GPs.....b12 back and negotiating funding to be resumed for my thyroid.
That's not being a good doctor. The aggravation & stress I went through to go from 3 monthly to 6 weekly was terrible. Then everytime I went about something else b12 was brought up. Did you know b12 is stored in your liver and can last a long time bla bla bla. Moved abroad I can have weekly if I wish as "it's just a vitamin and good for you" whole different view on it!! Luckily found a few decent doctors.
Here in the UK their main goal is to try and eliminate all injections. Those who have gastritis PA they cannot get away with stopping their injections, but everyone else they manipulate and gaslight into taking tablets. They stopped my injections and the only way they could do that was to say I did not have PA after all and original diagnosis must have been wrong. I do not seem to have stomach problems. 3 years later all symptoms back again. I requested a test the result of which they had to admit, was that I DO have PA. However it seems nowadays 12 weekly has turned into 3 monthly (yes there is a difference), I think that is the fault of the new guidelines, but then if the whole idea is to try and eliminate giving injections the guidelines would have to match as far as they dare. A full blood count does not include B12 as a matter of routine.
It must have caught you off guard with a GP you felt listened to and cared for. That's extra painful! And will add to your feeling of 'I'm not safe/cared for anywhere.' I know I have these thoughts of what will happen when I need to go into hospital or when I'm old and need care.
Good on you , you were able to see a therapist. You know it's not in 'your head', you're not crazy. Sounds like you handled that appointment with your GP really well. Have some cake and be proud of yourself.
I'm so sorry to bear what you've been going through !
I tell people I have pernicious anaemia because it's easier than trying to explain that I have all the symptoms of it, yet my blood levels of B12 are normal.
I have no gastric symptoms at all but I was very ill with symptoms of anaemia and neurological problems.
As all my signs and symptoms resolved with B12 injections, it would seem that I absorb B12 into my bloodstream, but it doesn't reach my cells.
I would never mention that to my GP as I had a difficult enough time getting a diagnosis !
Ah I’ve said the same thing to curious friends, or that it’s a disease similar to MS but due to the deficiency. It’s made quite a few of them go and get their levels checked!
You guys are all amazing, thank you! I’ve had my cry, had some brownie (love having teenage daughters who love baking!) and now I’m back in the good mindset again.
I’ll keep researching, reading, taking my B12 and finding my normal again.
I am sooo sorry. That is ludacris. Keep up your self care. It's very disheartening when we think we finally found a doc and they let us down. Sending empathetic hugs. Hang in there. Your know what's what. I don't know about the damage to the stomach and if you can have PA without damage. But if the way you've been treating yourself is working, just continue doing what you're doing.🫂🫂🫂
In the New UK guidelines it acknowledges that PA is a small percentage of b12d and that if b12 supplements don't work it should move to b12 injections. That the frequency should be increased until the levels is found that diminishes symptoms. This just needs to translate to doctors out there! Lol....
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B12 advice for a friend 
Not to easy....
FIRST HYDROXOCOBALAMIN INJECTION - feel even worse
Mislaid information
