Dear group
I had the results of endoscopy. Nothing at fault but confirmed atrophic gastritis pernicious anaemia-which I think is good news considering what it could be.
Question
- does AG cause PA. Or does PA cause AG ?
- does anyone have this type and if yes how is it for you coupled with PA ?
regards
AG CAUSES PA !
Thanks wedgewood. I thought this initially but gastroenterologist didn’t commit to saying this was the PA cause as people have AG without PA. But are you saying everyone with PA essentially has AG? I’m not so sure its as clear as that.
Atrophic Gastritis destroys the parietalcells in the stomach . These cells produce the Intrinsic Factor and stomach acid , both of which are needed to absorb B12 .
If you don't have intrinsic factor is that a sign that you definitively have atrophic gastritis? Thanks
Autoimmune atrophic Gastritis . Well yes , unless you have lost your parietal cells to surgical intervention, when you will still need to be treated as a Pernicious Anaemia patient with B12 injections . . But don’t forget that the test for intrinsic factor antibodies (IFAB test) can give a negative result , when in actual fact you do not have any Intrinsic factor , and do have Pernicious Anaemia .
Thank you. I was told I don't make intrinsic factor and that I have pernicious anemia. So tomorrow I have an endoscopy, I should probably expect to have AG?
I would say yes . You will also be lacking in stomach acid. Best of luck for tomorrow .
Hi,
I'm not a medic but I think they might be the same thing.
PAS link that mentions AMAG (Autoimmune Metaplastic Atrophic Gastritis)
pernicious-anaemia-society....
Keep a copy of the report as it's proof of PA diagnosis and may be useful in future especially if your treatment is stopped unexpectedly.
If you have a PA diagnosis, worth joining and talking to PAS.
PAS membership is separate to membership of this forum.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
PAS website has useful leaflets/articles and a page for health professionals that your GP might find useful.
pernicious-anaemia-society....
pernicious-anaemia-society....
Link about "What to do next" if B12 deficiency suspected or recently diagnosed.
b12deficiency.info/what-to-...
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
NHS Complaints
patients-association.org.uk...
Care Opinion website
Local MP may be worth talking to if struggling to get adequate treatment.
A few go the Press/other media if unhappy with treatment
Newspaper article about patient struggling to get B12 treatment in Scotland
eveningtelegraph.co.uk/fp/i...
And a positive follow up story
eveningtelegraph.co.uk/fp/b...
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Some of the info will be specific to UK.
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
I am not medically trained.
Thanks. Very useful !
If I had to give two pieces of advice to UK forum members, they would be
1) Always get copies of or access to all blood test results
2) Track down the local B12 deficiency guidelines for your CCG (Clinical Commissioning Group) or Health Board as these are likely to decide what treatment you get.
Each CCG (Clinical Commissioning Board/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency. Might be worth tracking down the local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links.
Some local guidelines have been posted on forum so try a search of forum posts using terms "local guidelines" or try an internet search using "name of CCG/Health Board B12 deficiency guidelines" or submit a FOI (Freedom of Information) request to CCG/Health board asking for a link to and copy of local B12 deficiency guidelines.
People can also submit FOI requests to GP surgery. Put FOI or Freedom of Information in search box on CCG/GP website and it will take you to a page explaining how to make a FOI request.
Read blog post below from B12 Deficiency Info website if you want to know why I urge UK forum members to find out what's in their local guidelines.
b12deficiency.info/gloucest...
Local guidelines get reviewed every few years, check the review date if you find your local guidelines.
Reviews are an opportunity for CCG/Health Board to change treatment and not necessarily in a good way.
If you have time, compare local B12 deficiency guidelines with BNF, BSH and NICE CKS links below.
UK B12 documents
NHS article about B12 deficiency (simply written, lacks detail in my opinion)
nhs.uk/conditions/vitamin-b...
BSH Cobalamin and Folate Guidelines (aimed at health professionals)
b-s-h.org.uk/guidelines/gui...
Summary of BSH Cobalamin and Folate Guidelines
pernicious-anaemia-society....
Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.
stichtingb12tekort.nl/engli...
BMJ B12 article
Emphasises need to treat patients who are symptomatic even if their B12 level is within range.
BNF Hydroxocobalamin
bnf.nice.org.uk/drug/hydrox...
NICE CKS B12 deficiency and folate deficiency
cks.nice.org.uk/topics/anae...
There are currently new NICE guidelines in development for Pernicious Anaemia and B12 deficiency. These should be published in 2023.
nice.org.uk/guidance/indeve...
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment (over 40 pages)
Autoimmune metaplastic atrophic gastritis —Leading to reduced or absent acid and pepsin production, and loss of intrinsic factor, which may progress to a severe form of vitamin B12-deficiency anemia known as pernicious anemia (PA).
The actual progression of this disease from beginning and what comes first the chicken, or the egg is not so well documented. At least in one place. If anyone has found something I would be interested in that.
But it seems to be clear that AMAG and PA have prevalence of 2 percent and 0.15 to 1 percent, respectively. This is an indicator that AMAG is a predecessor to PA.
I believe the progression looks like this:
1. Immune system goes “nuts” (not a scientific term just mine) and causes parietal cell and/or Intrinsic Factor Antibodies to destroy those calls.
2. This eventually progresses to AMAG in the upper part of the stomach
3. Once advanced enough B12 absorption is hindered, and Megaloblastic Anemia can occur (this is the only “Anemia” part of this disease. Also, Neurological symptoms.
4. Gastric acid is reduced or non-existent causing high levels of Gastrin to be continuously produced by the G-cell in the lower part of the stomach. Now causing AMAG in the Antrum.
What I have found it starts with Parietal Cell and/or Intrinsic Factor Antibodies destroying the parietal cells which are located in the Fundus and Cardia of the stomach or the upper part. This would begin to cause Gastritis within the Fundus and Cardia. Not really detectable at this point as there are still enough Parietal cells to continue producing IF and HCL for years to come as this disease has a very slow progression and is a decades long process. Once enough of the parietal cells are destroyed this causes AMAG to appear first in the upper portion of the stomach. Also, IF is no longer produced in enough quantity to allow for B12 absorption. At this point the Pernicious Anemia will present itself in Megaloblastic Anemia (enlarged deformed red blood cells) and/or neurological symptoms. Those are the B12 related symptoms. The other path is lack of Gastric Acid (Hydrochloric Acid) which is also produced by parietal cells. The low or no gastric acid now causes you to have very high gastrin levels. Gastrin is produced by the G-cells located in the gastric Antrum in the lower part of the stomach. This excess Gastrin now causes inflammation or AMAG in the lower part of the stomach.
Best wishes, Rex
Rex . This describes my situation exactly. Started with PA in the late eighties, Peripheral neuropathy (legs and feet) in 2000. Diagnosed with Severe Gastric Atrophy in 2011 . Annual Gastroscopy up to 2017 ,Now six monthly. Main areas are Fundus, Cardia and recently the lower body of the stomach. Awaiting histology report! I'm given monthly B12 jabs. Amitriptyline for the pain and discomfort and Gaviscon. Would be great to know What other treatments are available . Regards Jonlaur
Hi PAapr22
It might be an interesting thing to know, but what are you going to do with that information if you get it?
Rexz, above, says that AMAG and PA have a prevalence of 2 % and 0.15/1% respectively, and draws from that a causal relationship that I couldn’t draw without knowing how many people have both; but even if the whole of the people with PA have AMAG, that still leaves anything from 50% to 85% of the people with AMAG not progressing to PA. So even if AMAG causes all the PA there is, it leads to it in at most 50% of cases and possibly very much less. If I have read him aright, of course.
Personally, we think PPIs are in there somewhere as a cause.
Tracy Witty does sterling work, and we have suffered horribly at the hands of the Gloucestershire guidelines she describes; I have spoken to the consultant involved, and got the feeling that they were very proud of the fact that they were among the first to have guidelines at all. But times change, and it’s no longer 2005…
But you could go to the most NICE-compliant county in the UK, and the best you will get is a jab every two months. Our current frequency is weekly, thanks to those kind Germans we are in touch with.
Did somebody wonder ‘placebo’? Please don’t. This has been the result of a long process of going as far as possible between jabs, and trimming that down, looking for the optimum maintenance dose, and going beyond that weekly, to twice weekly, which gives no discernible improvement in our case, and then fastening on weekly for our normal activity routine. (But twice weekly on cruises).
By the way, ‘our’ refers to me and my partner; she has PA, I don’t.
But I am in the duprass, and I will fight like a tiger to get her what she needs and deserves; unlike someone with untreated or inadequately treated PA, the medical profession cannot fatigue me into giving up.
(You might well say that we have given up with the medical profession but not exactly; her doctor knows she has PA, knows she SIs, and having one jab in every 8 at the surgery is a figleaf we don’t need. But we are grateful for the folate, know that if the doctor hears anything new about PA that it will register. And perhaps most importantly, lets the doctor know that she’s not someone doing ‘remarkably well’ on a 2 month or 3 month frequency, which anyone SI-ing between the NICE jabs, but feeling unable to let their doctor know, looks as if they are, perhaps thus presenting something of a false picture).
This is not to deprecate the SI-ers for whom keeping it secret is their best or only course of action, of course; we had a doctor like that. Just to let you know that we feel lucky that we now have one we can tell, without any comeback.
"I will fight like a tiger to get her what she needs"
I think many of us wish we had a tiger in our lives....sometimes it's so difficult to challenge GPs when your head is full of cotton wool.
Don't know about "tiger", but if you ever need the aid of "grumpy kitten", let me know !
Amen to that sleepy bunny. Fighting this alone is very difficult. But this forum sure helps
I personally think Doctors give PPI to people with undiagnosed AMAG. How many people go to the Doctors with what they think is Acid indigestion and Prescribed PPI. I was Prescribed PPI after AMAG confirmed and made me twice as bad !!!
FYI, I'm in the U.S., in Oregon.
Two brief mostly relevant doctor stories:
I don't have much luck communicating with gastroenterologists. After my first endoscopy in 2018, the gastroenterologist said I had no signs of inflammation. She then explained that she had tried to remove a 3mm inflammatory polyp, but couldn't get all of it.
At an appointment with my new gastroenterologist last week, immediately preceding my second upper endoscopy, I asked about my low stomach acid symptoms. The gastroenterologist said that if I could digest food, I might have low stomach acid, but that it wasn't affecting me. He then said that PPIs help alleviate symptoms of both high and low stomach acid and offered me a prescription for a PPI. I declined.
I honestly think he had never heard of pernicious anemia. When I asked if he'd ever had another patient with pernicious anemia, he didn't answer, just stared at me, looking confused. He then mentioned removing some scar tissue from my last endoscopy. I said I thought it was the remnants of an inflammatory polyp? Again the look of confusion and no answer except to say imflammatory polyps aren't a problem and he wouldn't remove the remnant. I found out after the procedure that he did decide to take a sample for biopsy. It was benign.
I'm kind of speechless. I mean what exactly do they learn in school?? I'm sorry you had such frustrating experiences.
One of the first of many times I was prescribed PPIs, I took it for a few weeks. It completely and totally stopped my digestion. I told the gastro and all he could say was "i've never heard of that." That was before I knew anything about PA/AMAG. I just ignored his advice & went on with my life. Same gastro that a few months ago prescribed high dose PPIs for 6 months and basically misdiagnosed every single finding at least according to the 2nd opinion I got. I just ... I dunno. Their lack of curiosity and inquisitiveness, and apparently even basic training... no wonder people have zero faith in doctors.
PPI line your stomach, protecting stomach lining from drugs such as anti inflammatory medication, So in theory if PPI s line your stomach for protection , they are also blocking the stomach from absorbing nutrients.
Short term they should be fine, it's long term use that's the problem.
We need stomach acid to breakdown food.
Do PPIs line the stomach?
I thought they interrupt the formation of hydrochloric acid?
Sucralfate can help an ulcer to heal. Gaviscon can help prevent reflux.
This is confusing !!!Doctors issue anti inflammatory drugs and PPI saying take PPI to protect the lining of your stomach two hours before the medication.
(Now I am not sure if this true for the younger generation, but certainly true for several of elderly people I Know)
When this first happened to me 3 months ago, my stomach was hurting so bad and I was very very and Bloated and my doctor gave me PPI omeprazole. I told him I'm afraid to take it because I heard it causes stomach cancer and that runs in my family. And because I have PA I was nervous about taking it. He told me it would be okay for a short time, because he needed my acid to calm down before my endoscopy. I took it for 2 weeks and the minute my acid got to where I could handle it, I stopped taking it out of fear. What really amazes me is why isn't there a doctor out there who suffers from this and has taken it upon themselves to do deep research about it?
Does this pertain to things like Tums?
One thought might be the levelling up system.Why should norfolk and waverley have such different treatment for b12 deficiency to Gloucestershire.
B12 treatment should not be down to Post Code !!
That is good news, compared. How often do you have to get another one to keep an eye on things? I have one in the morning. I'm anxious but hopeful. Did you have a lot of nausea and pain, bloating? Is that why you went in?
This article might be interesting. About ppis, antacids, hpylori and atrophic gastritis
Pernicious Anaemia
New to Pernicious Anaemia
Pernicious Anaemia Society - communications team
NOT Pernicious Anaemia?
