I was diagnosed with PA around 2018, I had the camera down which confirmed atrophic gastritis, I had positive tests for anti parietal cells and intrinsic factor; so classic PA. My B12 levels were around 300 at the time and not considered low but i was given loading doses and monthly injections. However, symptoms (fatigue, shortness of breath depression, insomnia,smelling 'phantom' odours) continued. I eventually started self injecting and the symptoms disappeared. If I try to space out the injections the first symptom to reappear is depression. My question is this: why don't I have other positive indicators (MMA /homocysteine)? Admittedly the only time my specialist ordered these tests was when I was self injecting and therefore symptom free. As the tests were not done at the right time I always have this nagging doubt that I self inject when I don't need to, and yest my body tells me otherwise . Any thoughts?
Am I really lacking B12?: I was... - Pernicious Anaemi...
Am I really lacking B12?
I say “listen to your body “ expatkerry . It’s no use sticking to rules and generalisations. PA/ B12 deficiency is a severely under - researched condition . We all have to find our own solution and salvation because the medical profession is totally in the dark about it . ( but we do have the hope that one day this condition will be properly researched and understood ) And we are all different . P.A. manifests itself in so many different ways . There can be no one treatment for all . Treatment has to be tailored to suit . We have to be our own tailors . But this forum is wonderful because it enables us to read of various possibilities . Thanking all who write in with their experiences. Best wishes .
Thank you Wedgewood, I am listening to my body as the alternative to self injecting is unbearable.
I’m so glad to hear that expatkerry ! It’s a huge comfort to know that one can’t overdose ( my GP told me that more than one B12 injection every 3 months was TOXIC !
Even though I was warned on this forum, it still came as a surprise to me, years ago when I was very ill and desperate, how little GPs and consultants know about B12 deficiency.
But what really shocked me was the refusal to listen to patients / their inability to notice them. Surely the amount of people they saw with B12 deficiency would, over time, alter their perception , would make them observe/ understand how severe the symptoms can be, and offer better help. Find out what works for the patient in front of them.
Preferably before the patient loses their job, becomes unemployable. becomes isolated, becomes housebound.
Loved your advice about being our own tailors - I was lucky to have a GP be my tailor initially. I acknowledge that that is rarely the case, but wanted to mention, especially today, that there are GPs who you can trust to support you through this.
expatkerry : I also had, among other symptoms, those you listed. Including the phantom odours. My brain has now, it seems, caught up with my nose and is correctly identifying smells. I no longer need to check with my partner on that.
After trying to treat me with antidepressants three times, my GP did believe me when I said that my low mood was just another symptom, did believe that all my symptoms were connected and that the regime that she had been using for decades was just not working for me - and from that point onward, was very supportive.
She gave me a diagnosis of functional B12 deficiency and put me on 2 injections a week. This was made possible for me because my MMA level was still raised, despite all the previous injections (6 loading, then 3-monthly maintenance injections) and because she got this test done at primary care level. She ruled out renal issues, later SIBO was also ruled out. That only left B12 as the problem - and the new treatment frequency worked well;, so well that she continued this for 6 months.
Yes, eventually I had to self inject, but she was able to see past the norm and was certainly swimming against the tide with her decision, which can't have been easy. Even the nurses were reluctant.
Later, a haematologist decided that my continually-raised MMA must be "my normal" - she was wrong. My MMA, which had remained raised for three years, dropped into mid-range on the 6th test.
Nothing, other than the frequent B12 injections, can explain that.
My folate and ferritin stabilised, with treatment my osteoporosis of the spine reduced to osteopenia, I no longer have poor healing, susceptibility to infections, my hair no longer falls out, after over a decade my angular cheilitis cleared up with ongoing treatment, and improvements continue for me. Lately, Pascoe seems to have made symptom return more predictable, which helps me ensure that I can second-guess for a better quality of life.
My homocysteine, when tested by the haematologist, was 7.2 - normal, but that doesn't mean I was !
I self inject with a three-day gap. If I accidentally leave a four-day gap, invariably I will need the next injection a day early, just to get back on track. This is not just my opinion - my partner notices the difference too.
Hi, thanks for your reply, it's really helpful to see that there are so many similarities (and you don't feel like a complete weirdo every time you ask 'what's that smell?' ) funny you should mention SIBO as I have a severe case which has given me malabsorption, I can't eat carbs at all not to mention multiple other food intolerances including meat. I've had this from childhood and Ibelieve this is the ground zero of my health issues .
Poor you.
Small Intestine Bacterial Overgrowth (SIBO to you !) difficult to get rid of - these bacteria will steal your vitamins, including B12. The others, I believe, are the fat-soluble ones: A, D, E, K. Which is a bit of a blow to your wellbeing !
An attempt by a haematologist to explain my raised MMA (despite B12 injections) led to requesting I be tested for SIBO. My GP trialled me on antibiotics after having an "inconclusive" SIBO breath test series - and all I found was that I had a reaction to the antibiotics: severe vertigo and constant headache. I persisted with the course to see if it made a difference: none. GP was already sure that I had functional B12 deficiency as the cause for raised MMA - so ruled out SIBO.
My GP had explained that treating SIBO was difficult - that the bacteria often became immune to the type of antibiotic being used to treat it, meaning that if/when there was a return of SIBO, the next course would need to be different. Some antibiotics also deplete B12 - adding to a deficiency. So we were both quite relieved that, given the adverse reaction, SIBO was not my problem.
Exactly the same adverse reaction later happened again with a different antibiotic, given for a gum infection, causing loss of teeth. This had never happened with antibiotics prior to B12 deficiency, although I'd rarely had need of them.
Luckily, with time and frequent B12 injections, my susceptibility to infection and inability to fight it off disappeared. Healing has improved.
What treatment programme are you given for your SIBO ? Is it just varying courses of antibiotics when suffering flare-ups or is there more on offer ? Do you get all these vitamin levels regularly monitored ? I wonder if there is a SIBO specialist that can help you improve your long-term vitamin intake, and up your "good bacteria" count ?
Weird things happening to you doesn't make you a "weirdo", expatkerry - not here at least, where strange stories abound !
Given your severe SIBO, it would be a huge surprise if your B12 wasn't being depleted by the bacteria. B12 is their absolute favourite.
Yes SIBO is hard to treat, I know what you mean about antibiotics I've had several courses of antibiotics including the most expensive antibiotics (rifaximine) twice!! But no joy. I was also given Ciprofloxacine which provoked toxic psychosis and left me 12 kilos lighter, I've never managed to put the weight back on and lost my job as a result I won't be taking antibiotics again Probiotics, even targetted ones haven't worked either. My gastroenterologist would like me to have a fecal transplant, but nobody is doing it here in France. I looked into a DIY transplant but it is risky, I get vitamin D injections as i can't take them orally.
I had a fecal transplant done in Slovakia for other gut issues. It felt professional and they were kind. It does cost a lot tho.. but at least I gained some foods back in my diet now .
Thanks for replying, this is interesting, I'm going to look into this.
Was that an endoscopy? I had one done a few weeks ago and they found nothing, so can I assume that I don't have atrophic gastritis?
Yes, it was
If they didn't see anything, then you don't have atrophic gastritis.
what I will say to your question is that undoubtedly you are b12 deficient and with SIBO probably will need injections for life.
You can't inject too much.
Injections took me from 200 where I was bed ridden from fatigue. Had shortness of breath, heart issues, high resting heart rate, brain fog, severe back pain, sciatica, numbness of hand and feet to now mostly free from all those symptoms.
This is because of daily if not eod injections for the last 2.5 years. I continue to frequently inject as it allows me to exercise. I have come a long way and so can you. Get supplies and self inject.
Also supplementing with a b multivitamin helps.
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