Just read from a post by Rexz , that in the U.S.A. a diagnosis of Pernicious Anaemia can be confirmed by examining the pathology of the parietal cells .( by endoscopic ultra-sound ) This seems an excellent method for confirming such a serious condition as P.A.Which can lead to serious health problems if untreated or undertreated . Why is it not used here ?
Very useful where a P.A. patient gets a negative result from an Intrinsic Factor Antibodies test , but has symptoms .
Considering how much B12 issues are overlooked in this country, it might be that nobody has thought to ask/do it. It might be just all part of PA not being taken seriously.
And yes, probably cost too.
Maybe there's a protocol here whereby the test for IF antibodies should be repeated to increase the accuracy of its outcome (as only +ves are valid) but this isn't adhered to?
To be honest, I haven’t come across anyone who is actively looking for it - it always feels like they'll grudgingly do the test to rule it out so they can get rid of you without having to do anything for you. 🙄
If it shows up positive then they grudgingly do the least they have to do - jabs no more often than 12 weeks if you ask for them!
Sorry if I'm being negative this morning but things do seem to be rather nonsensical.
Yes I agree ! I actually deleted my thought about it being too expensive for the NHS . I thought it might offend ! I have to be careful about my remarks because I am so outraged by how PA patients are treated . I can be offensive !
Ah ha - I saw your original post before you amended it! I'm afraid that if it's the case, no matter how polite we are, it doesn't change it - but equally don't want to offend.
Due to a deliberate choice by my surgery to block me having the cheap antibiotics I needed earlier in the year, I now have to have expensive ones for the SIBO I get. My consultant has written to them saying they should let me have them on free access. It's just taken from Thursday to Wednesday to get them this time because they don't want me to have them because they are expensive!
I have to have some digestive enzymes which are expensive too and they mess me about over those regularly, whereas I can readily get some cheap antivirals from them.
I know costs are important - as only someone who is self-employed with dodgy health can know - but as we've said on this group so many times, it is farcical to scrimp on something that can save thousands in the long run.
For example, I have a lousy immune system and so have repeatedly asked for antivirals if I get covid. No luck. So when I got it I was horribly ill and ended up with 3 months of migraines every day afterwards - for which they gave me eye-wateringly expensive migraine tablets! By far the best and cheapest option would have been to have given me the covid antivirals!
In my experience much of the NHS is not exactly consistent in it's economies - nearly all economies seem to bare down on the actual user, the raison detra, of the organisation rather the myriad inefficiencies every within it. It could be so much better than it is- if only it could see see the good bits and get the bad bits to copy them. But I'm not sure itcan.
Yes , right ! It must cost millions to eventually , down the line , have to deal with the many neglected , undertreated and untreated patients with B12 deficiency/ Pernicious Anaemia .
Ugh. Yep, I have regular flares of SIBO/SIAO.
A pharmacist once rang GP to ask whether cheaper ones. They said no. I’d already priced how much the antibiotics were. A private gut microbiome test is 3 times the cost.
I have purchased 4 microbiome tests.
I do love chatting to a particular friend. We talk about nature, the change of season and only a bit of work. What do they do again ? Oh yes, a tax inspector.
🐳
😂🤣 I’m only looking properly at this thread.
I immediately replied cost. wedgewood, yesterday I bought a new hat. It cost £2.00 that is a fact.
I have to take Solgar gentle iron 20 mg 90 capsules. Cost £12.99.
I keep a massive document of ALL of my medical EXPENSES. They are facts and figures.
In my reply to TMur1990, I just stated facts. Introverts when very angry, shut down for a minute or two then go onto ROBOT mode.
I can guarantee that your thoughts on the issue of why cheap, safe and highly effective treatments are not being fully used by NHS are nowhere near mine in terms of anger, disgust and derision! There was an estimation made by Hugo Minney Ph.D. (chief executive B12 Deficiency Support Group)in 2010, ‘that the failure to diagnose B12 deficiency is costing NHS a minimum of £894 million per year in medical care required, quite independently of the additional social care, the loss in economic output for British commerce, and the damage to people’s lives caused’. He joined with Dr Joseph Chandy to produce the book ‘Vitamin B12 Deficiency in Clinical Practice’ which explains the fight of a pro-active GP with total integrity and excellent record keeping (and over 40yrs working for NHS) of treating his patients for B12D and how he then had to fight to save his own career as he was told to stop or be struck off?! I bought this book from Amazon to read and it completely explained how and why my own mum’s death was brought about by the policies put in place in my district even though the evidence/science had been presented to government and governing bodies?! That is why I am EyesWideOpen- now!!!
Is employing more nurses for injections a reason for denying patients their B12 injections?
How are practice nurses paid, I wonder ? Are they paid out of the sum that the surgery is given which is according to the number of patients on their list ? Are surgeries limited according to the number of registered patients ? I’m trying to figure it out .
I’m 100 % convinced that my mother died from Pernicious Anaemia. I know so much about it now , it’s various symptoms etc . It’s a very slow horrible death , and at the end, a kind of dementia .
Consider the savings made by patients not progressing further into the myriad of other diseases that B12 prevents and the further cost in treatment and appointment time to a surgery? Ask the right questions of yourself and others but be prepared for unsavoury answers 🙏🥴
I think it is something higher up than NHS! Ever the cynic-if something doesn’t make sense then follow the thought-who would lose out if we were treated and healthy? 🥴
I would say more than nonsensical, more medically negligent.
Yup! But, like wedgewood I was trying to be delicate! 😁
Exactly deniseinmilden, Cost.
Very interesting and very important. It is a step on the way, as you say, to PA being regarded as the serious condition that it is.
Thank you so much for posting this! It just made things much clearer for me. Yesterday when pre registering for my appointment today, I saw that they had listed Pernicious anemia with "parietal cell antibodies" and autoimmune atrophic gastritis as one of my conditions. I had never seen that before. This is a brand new entry! It was always just B12d. They refused to believe I had PA since they found B12D two years ago.
So I looked up to see if I had had a PCA test in mychart, and one was done august of 2022. Yet they still denied my PA until literally now!.
My PCA results were 22 and the range is: Normal value: <=20.0 (Negative) U. Not real high but still high. So I had PC antibodies back then but they still refused to believe I had PA, so I was put through a second IFAB test to try and prove it. which meant I had to starve myself of B12 and degrade my condition. Even after two IFAB tests - One POS and one undeterminable, they still refused to put PA in my chart. UNTIL NOW!
Recently, I had 238 tests ran from 32 vials of blood and now suddenly because of IGG, IGM and Panca and Canca etc, finally they have agreed that I have PA and have put it in my charts as such!! And it includes "due to parietal cell antibodies"!! so I believe they finally connected the dots!!!
Now I am just waiting for cognitive tests and an MRI to see what kind of damage I have in my spine and brain etc. I believe, the pulmonary doc (of all docs) might have seen the PCA test when he decided to run all these other tests... I am so grateful to him. Finally, I am no longer struggling to crawl out of the cracks of the medical world after literally a lifetime of misdiagnosis. I feel finally I have a real diagnosis with proof and it is in my records as Pernicious Anemia due to autoimmune atrophic gastritis AND 'Parietal Cell antibodies'!!! It is in writing in my chart!! Until you posted this post, I had no idea. But now it all falls into place.
So perhaps we SHOULD ask for the Parietal Cell Antibody test instead, or besides the IFAB as well as ANA, P-anca and C-anca. IGG IGM tests. I don't know the proper way to write their names but I believe once I had all these tests, one of my many docs was able to finally connect the dots. They still had to rule out Lupus, Multiple Myeloma and some other scary things but once they ruled that out all that was left was PA!!!! Finally!!
EllaNore , I’m so pleased for you ! At long-last the diagnosis of the condition you had all along . But think what “THEY “ have put you through for so long . Hope that you are not left with any irreversible symptom.
Thank you Wedgewood, I feel a bit more at peace. I have some fairly bad symptoms but not as bad as many others. I am just starting to get out and take pics again and go for short walks in the woods. It is just a relief to know and have THEM believe me. Thanks to Rexz too for writing about this. He's one smart guy.
What does PCA mean how is that done? Doc says I’ve PA with parietal antibodies
Hi Berry007, I just abbreviated Parietal Cell Antibodies. Are you newly diagnosed? If so, and your doc says you have PA then they will want to put you on b12 injections. Has that happened for you? Someone else can explain parietal cells better than I can. I just know they are rogue cells that take the place of the real ones and then things stop working correctly in our gut.
Parietal cells , found in the upper part of the stomach , are the cells that produce stomach acid and The Intrinsic Factor , both needed to absorb B12 and stomach acid needed for us to eventually absorb other vitamins and minerals . They are destroyed by the Intrinsic Factor Antibodies which Pernicious Anaemia patients produce . Therefore PA patients are either low in stomach acid ( Hypochlorhydria) or have no stomach acid ( Achlorhydria)
As parietal cells are gradually destroyed would it follow that there are less detectable antibodies as there are less cells to react against? Ie. could long established PA be harder to diagnose than a recently developed case?
I had a look at your bio so you have been on b12 for a little while. If found early enough, one can get ahead of any irreversible symptoms that PA causes, but usually it is misdiagnosed for decades before being found so by that time many have irreversible neuropathy and other things. I am not sure I can explain the difference between B12 deficiency and Pernicious Anemia. One can have B12 D due to being a vegan or vegetarian, but someone with PA has an autoimmune condition that is causing it. For whatever reason, some of us can't absorb b12 due to lack of intrinsic factor, which is why we take an IFAB test (intrinsic factor antibody test) Which tells if we have the protein that B12 needs to bind to to be absorbed in our lower ilium (intestines). Now I also think, but if I am not correct someone please correct me, but often times when we have a gastric scope done and they see that the lining of the stomach is eaten away that one has atrophic gastritis. And I believe that the parietal cells are responsible for creating the acid needed to digest our food and make IF that excretes vitamins from the food we eat. Here is a quote:
Parietal cells are epithelial cells in the stomach that secrete hydrochloric acid (HCl) and intrinsic factor. They are located in the gastric glands found in the lining of the fundus and body regions of the stomach.
Parietal cells are responsible for:
Gastric acid secretion, which aids in the digestion of food, absorption of minerals, and control of harmful bacteria
Producing the vital component of the gastric juice, HCl
Secreting the intrinsic factor, which is a vitamin B12-binding protein
Parietal cells originate from immature progenitor cells in the gland isthmus and then migrate upward toward the pit region and downward toward the base of the gland. They are the largest cells in these glands.
Yes been diagnosed a year now, started SI last January, yes I know about parietal cells I just didn’t get the abbreviation 🤦🏼♀️ PA has made me very stupid, awful symptoms! My parietal cells were 169
Oh OK. OMgoodness that seems very high. I don't know your range as all labs are different but that seems high. Going by my range. PA does make you feel stupid. I have a lot of duhh! moments. 😜So glad you are SI'ing. I hope that is helping you.
yes definitely feeling better, so upsetting when I think about how ill I was this time last year just to be fobbed off!
I'm so sorry. I can relate as many can. Well, I am so glad they FINALLY found it and that you can treat yourself. That is the only control we really have with this. Do you think you had it for decades and didn't know?
I believe so, I been to doc in 2019 telling him how bad things were, eg I’d walk out to the kitchen to prepare food for kids, standing out there not remembering why I was there, putting stuff on the cooker forgetting it was on, driving had to stop as I was forgetting where I was going, ran a red light..I was dangerous! Forgetting words, people, faces…that’s just memory there were/are so many and was going on year before that too, always had low iron needing infusions etc they no nothing about b12 it’s very sad
I'm so sorry Berry007. I believe some of that could get better and you might be able to drive again. 🤞It is very sad. They know nothing of B12 is right. I can't believe in all these years we are still in caveman days with this. I think we have all suffered similar symptoms. We are not alone. Although it feels like it a lot of the time. We have our fellow friends here.
What does that mean, how?
If treatment of B12 deficiency / Pernicious Anaemia is delayed for too long ( “too long “can be various lengths of time . as we are all different ) the patients can be left with an irreversible symptom ( or symptoms ) I know because it happened to me .
I'm curious wedgewood, what symptoms remain?
For me it is brain fog. I've never 100% cleared that up.
I had totally numb feet . when i was able to self inject , I managed to get rid of the numbness , but was left with burning feet . Not hot to the touch , I just have the sensation . Quite painful , but better than numbness . Yes I have a bit of brain fog , but that might be old age !
Thanks EllaNore . It’s not too terrible . I can cope with it . But it’s maddening when you know it need not have happened !
Agreed!! It is indeed maddening! We all keep trying to tell someone but no one listens. It is infuriating!! Especially when we have to PAY our life savings to them for NOT doing a good job, we medicate ourselves and doctor ourselves and pay for our own medicine. When they should be compensating us for decades of malpractice, bullying, gaslighting and breaking us, physically and mentally! But it is never going to happen, so I am not going to let them take any more of me.
I am not going to let them take any more of me.
There is nothing you cannot conquer because of your journey. We made it. People can think what they like if I have music on my headphones and am doing a little dance in a queue or at traffic lights.
Yesterday, I saw 3 people I knew. One of them, I was utterly thrilled, we hugged, we roared with laughter, they have their own health journey. They were part of my tribe in my 20’s. Best still we exchanged digits.
Whilst chatting, a woman who I went to school with caught my eye. Me, being me, let out an exclamation and swore. This is the problem, doctors see I have a female name, a female body but nope, I am a tomboy. I think like a man, my best friends are men.
One evening, my sister, a consultant, rang me to see if I was ok as my relationship had broken down. I was drilling, putting up shelving and cabinets.
Rexz is a man. How many of us on this thread are female please ?
Yes, I am a man!
You’re stunning.
Oi, that’s my tusk you’re holding onto. 😂
I always maintain that there's no such thing as an 'ordinary ' person. Everyone is interesting in their own way, but Narwhal, you are a particularly interesting person ! 🙂 I love your style 👍🤩 Keep being you ! Xx
Hi Ghound, I emphatically agree on your comment regarding normal peeps. Narwhal10 is especially interesting with her long tusk and big eyes both of which I lack! 😆😂
There is a good book by Gabor Mate called the "Myth of Normal" I'm not too far into it yet but I find it a very interesting take on this and so very true.
drgabormate.com/book/the-my...
you can also find it on Amazon.
Sending well wishes, Rexz
Why thanks, (blush),
Nobody is ordinary or average.
Genghis, my imaginary cat, keeps me in check by clawing me. Notes taken, narwhals cannot take over the world. Being on dry land poses a serious health problem. Very much like P.A/B12D.
I'm female ( last time I looked in the mirror) However I was lucky to have parents who would never have dissuaded me from doing anything in life, whether it be a traditionally male career, hobby, pursuit ,or not.
Dad even, in a crazy fit of optimism, once asked if I fancied following him into civil engineering!
This from the man who toiled many an evening in the vain attempt to instil the very basics of maths and physics into my brain !😳😢
I think he must have been running a temperature !!! 🤪🤣
Love that Narwhal10!! OMGosh, I would love to hang with you! I am a twice widowed female tomboy that rides a motorcycle and swears!! LOLOL Love your post! Have tools will travel!!! We would get along GREAT!
😜 I’m sure we would. I want your boots, clothes and motorcycle.
I’m afraid that my tools do not comprise of single balloon nor double balloon enteroscopes with video capsules to examine the pathology of the parietal cells. Wedgewood knows their stuff.
The diagnostic process can be rather lengthy. Clinicians will treat immediate illnesses/conditions which are emergencies. Then try to ascertain by referrals and/or investigations a clear diagnosis. Ideally, some head scratching and lots of collaboration.
One of the most challenging aspects is the environment. It includes the culture of an organisation.
Hi Wedgewood
It’s not only the NHS that doesn’t take PA seriously, it’s the private healthcare providers too.
Hubby has response and treatment authorised within days for heart related issues but I have been trying to get authorisation for a SIBO test since March and being sent from pillar to post.
Meanwhile I have to self treat as GP not interested and I don’t get any B12 prescriptions from them or vitamin D or anything as I am above minimum levels.
It’s costing a fortune in supplements and B12 but at least I am feeling better again now and I can start to approach normal function. Neither the NHS or private health care appear to be about health anymore.
🤗🤗🤗
Hi Wedgewood,
Just to clarify Although I did include endoscopic ultrasound in my post it is really the endo biopsies of the fundus oxyntic mucosal tissue that a pathologists looks at through microscope they can properly see the damaged parietal cells. This is the only 100% diagnostic of PA/AMAG.
I am one of the rare ones that have had gastric cancer as a result of PA...my cancer was in the guess where... Fundus. Thankfully it was removed early enough. But now I am considered very high risk for gastric cancer again and am screened endoscopically every 6 to 8 months. Part of this cancer screening uses endoscopic ultrasound where they ultrasound me from the inside out looking at the walls of my stomach for any signs of cancer.
As I read all the wonderful posts to this topic I keep reading cost, cost, cost. Yes, 100% its cost. In fact if you read most medical research papers on endoscopic or gastroscopy screening and surveillance periodicity there is most always a statement about "cost effectiveness" in there. That statement simply means (my interpretation) if you do not push for it and push for it hard they will ignore it.
Thanks for bringing this to light in your post it brought out so many great comments.
Best wishes, Rexz
Fundus and oxyntic. Oh shivers down my spine, you sly dog. 😉
Hmmm sounds like it'd make for a tasty stir fry... 😜
😂🤣 Great mates know that I do a great Antony Hopkins impression from his role in Silence of the Lambs. 👹
Yuk Liver!!! 🤮 😆
his other movie...Britain's Schindler's list. I think that's why we are here... although I'm not Jewish I do subscribe to this quote.
"Saving One Life Saving The World Entire"
🙏
Thank you so much Rexz. Your post has enlarged our knowledge. Knowledge is power , and we need that .
wedgewood, this illness has completely humbled me more than I can say. I have discovered that I'm the first in generations on my paternal side to survive this PA illness that I'd never heard of. So why am I still here if not to help others in any way I can. even my substack story I've people telling me I should charge subscription but I shall not as it's a story for everyone to hear I think anyway. It is still today a mighty struggle to get diagnosed and treated and therefore still deadly to many who go undiagnosed so as I say the "Pernicious" in Pernicious Anemia is alive and well even today.
Wishing you the very best, Rexz
I hope this is in some measure relevant.
I was really angry recently about blatant waste of money and medicine at my local medical group and pharmacies .I was prescribed Efudix for sun damaged skin. Instructions were to use as tiny an amount of this cream as possible. I was given a 40g tube. Looked up the price : £54 per tube.
I don't understand medical measures, but I did not use a quarter of an inch of cream from this tube. The tube is approximately 5 inches long, 3 inches around. My caveman reckoning says that my one tube could have supplied, a lot more than 20 people, still resulting in too much left over to rot (if indeed it does rot).
I asked around briefly, and spoke to at least 6 people in my road who were using this cream and they knew of others using it too. (More since) so unnecessary, such waste. Just the 6 neighbours I spoke to added up to £324. No one, or few, will use more than quarter of an inch out of each 40g tube.
Why is it not given out in small tubes at a much lesser price?
Where will the discarded, left over cream go?
Possibly dangerous to the environment. Irresponsible at least.
Crafty money making ruse?
I do apologise if there is a good reason for large amounts being doled out willy nilly to the public.
My gastroenterologist ran both Parietal cell antibody and IF antibody tests to confirm the PA diagnosis, along with a colonoscopy and endoscopy. Thought this was the standard protocol. My GP discovered the B12 deficiency after many, many years of IDA, and then finally macrocystic RBCs. Luckily she referred me to a very good gastroenterologist.
Everyone with AMAG, and no parietal cells must take HCL with pepsin when eating anything. It took me having SIBO twice and IMO once to finally take up to 800-1000mg HCL per meal to keep everything in balance. Also don't eat raw foods, and any green tinged cheeses (pretend you're pregnant again). You also have to take more more HCL than you think you need, and you may need other digestive enzymes. Also you must learn to self-inject - my GP taught me. It's pretty easy to get all the kit -- see other posts on supplies. Good luck to all.
parietal cell test positive then negative
parietal cell antibody lab results
Negative Intrinsic Factor & Parietal Cells
Intrinsic factor/parietal cell testing
Parietal Cell Antibody test refused by GP
