Hi everyone, I just want to ask.....have all of you that have been diognosed with PA had stomach surgery,bowel surgery or do you suffer from something like crohn's disease? 🤔
A question for all pernisious anemia ... - Pernicious Anaemi...
A question for all pernisious anemia sufferers .
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Mewsmom
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Pernicious Anaemia is, specifically, an autoimmune disease, where the immune system attacks certain cells in the stomach (parietal cells) that produce a protein called Intrinsic Factor (IF). The B12 molecule is too large to cross biological membranes unaided, so it binds to IF. There are receptors in the wall of the ileum (the last section of the small intestine) that grab hold of the IF and drag it, along with the B12 inside themselves. There the IF and B12 are separated and the B12 goes into the blood.
Stomach surgery can remove the parietal cells, thus preventing IF production and, hence, B12 absorption.
Bowel surgery can remove the ileum, preventing B12 absorption.
Crohn's disease can affect the ileum, preventing B12 absorption.
All with cause a B12 deficiency, but only the autoimmune disease is Pernicious Anaemia.
Hi, the reason I've asked that question is because my drs surgery are telling me... unless you have had stomach/bowel surgery or something like crohn's you do not .....not.....have pernisious anemia....what do you say? I'm very keen to get opinions about this from people like myself diognosed with PA ....but now being told. ..... unless surgery etc ....you don't have PA
Your doctors are talking complete and utter balderdash, with a sprinkling of tommyrot.
Here is what the British Medical Journal say (and they should know)...
What is pernicious anaemia?
Pernicious anaemia is an autoimmune disorder affecting the gastric mucosa with impaired absorption of dietary cobalamin (vitamin B12) resulting in B12 deficiency.
Thank you.....I'm totally fed up, I was diognosed two & a half years ago & have been getting b12 injections ever since (12 weekly) as soon as the pandemic hit I've had a battle with my surgery to get injections,I've been told all sorts of nonsense rubbish......the latest being as I've said...that because I've never had part of my stomach or bowel removed etc I've been told by my surgery I do not have & have never had PA, this has caused me so much anxiety....they have point blank refused me injections & put me on tablets......which I take because I'm so scared if going backwards to the place I was in before injections.... I am now (esspesially with your response tucked into my confidence) thinking of making an official complaint about the way I've been told ....you never even had PA.,...well I didn't diognose myself!
I’ve been doing my own injections since the pandemic started but did qualify as nurse many years ago. If surgery are being difficult because they are reducing appointments you could ask if you can do them yourself. Obviously shouldn’t have to do this but it is vital you get injections. Doing injection is easy and there are good videos showing which muscle to aim at! Or direct message be!
I already asked that question ....hence the clinical technician at my surgery has now said.... because I haven't had stomach surgery I don't have PA, I asked the question on here because so many suffer from PA & I know a lot of people have struggled to get their injections, I did for a while.....but now this new!!! reason to stop my injections , I did d check out the information my surgery had given me, & yes if you have had stomach surgery you will most likely develop PA , but as I understand (& if I'm wrong I apologize) you don't have to have had stomach surgery to develop PA..... 🤔
Quite right! Have you managed to get the injections as they’re vital?
There is no question of having an opinion about Pernicious Anaemia! There are just the FACTS about it that fbirder has explained in his. very clear answer . It’s really hard for me to believe that a doctor could say that you only have P.A. if you have Crohn’s disease or have had stomach surgery . That’s just nonsense . If a doctor really believes that , he must be investigated. He should not be practising medicine . Those conditions you mention can cause Vitamin B12 deficiency , not P.A. P.A. is the most common cause of B12 deficiency . It is incurable and needs treatment ( injections ) often enough to keep symptoms at bay , FOR LIFE .
Think my response went into cyber space.....but I said ,yes it's hard to believe but it's true....they even sent me a letter with that on to explain....why I've never had PA....I am seriously thinking of making an official complaint.....the whole thing has caused me so much stress.
Good that you have it in writing . This complete nonsense is dangerous ,and must be stopped . There is a higher authority to whom it must be reported . Get several copies of that letter. We will all want to know the outcome .Best wishes . .
Thank you, I will let you all know how this pans out....we shouldn't be treated this way....I've posted on here before about how unbelievable it is that so many people in the medical profession do not know much about PA .....I've also commented on here that when I mentioned to the clinical technician that I'm a member of the Pernisious Anemia Society....before I could say anything else she said ' who are they, a group of your friend's...........tut tut...
I was doing some unrelated reading through historic research documents and found this:
Pernicious Anemia and Related Anemias Treated with Vitamin B12
ncbi.nlm.nih.gov/pmc/articl...
Jones E, Darby WJ, Totter JR. Pernicious Anemia and Related Anemias Treated with Vitamin B(12). Trans Am Clin Climatol Assoc. 1948;60:99-122.
They actually discuss individual subjects - which has its own interest.
Of course, as with all historic things, remember that it is over seventy years ago!
Hi fbirder, I think celiac disease may cause damage to the ileum too. When I had my appendectomy while unknowingly celiac I think I had a part of my ileum shortened during the operation. Since becoming gluten free my ileum has eventually recovered allowing me to consume dairy products due to the villi producing lactase now. I still need the B12 injections though.
Hi,
Apologies if I've given you these links in an older post.
"Think my response went into cyber space"
Might be better to write a letter and post it to them or perhaps post and email?
Unhappy with Treatment (UK info)
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.
Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.
When a letter is sent to GP, worth including a request that GP practice sends written confirmation to letter writer that they have received letter.
I included a request in letters that a copy of letter was filed with medical notes.
My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so are therefore a record that an issue has been raised.
Useful to have a paper trail in case there is a need for a formal complaint over treatment in future.
Letters could contain relevant test results, date of diagnosis, brief family and personal medical history, extracts from UK B12 documents, requests for referrals to relevant specialists eg neurologists, haematologists, gastro enterologists.
Keep copies of any letters sent or received.
Retention of UK medical records
bma.org.uk/advice-and-suppo...
Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.
If you get proof of diagnosis eg positive test result/letter from specialist confirming diagnosis etc keep a copy in a safe place.
CAB NHS Complaints
citizensadvice.org.uk/healt...
Advocacy Services that can help people with NHS Complaints
citizensadvice.org.uk/healt...
Have you considered joining PAS who can offer support and pass on useful info on PA?
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
PAS support groups in UK
pernicious-anaemia-society....
No face to face meetings at moment.
PAS have a leaflet "Treatment is for Life".
pernicious-anaemia-society....
PAS news items
pernicious-anaemia-society....
There is a PAS news item about contacting NHSE about treatment concerns during pandemic.
pernicious-anaemia-society....
I've written some very detailed replies with more B12 info eg causes of b12 deficiency, symptoms, B12 books, B12 articles, hints about how to deal with unhelpful GPs etc that you may find of interest.
See links below.
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
I am not medically trained.
Hi, I'm ahead of you there, when they! first tried to stop my injections due to the pandemic I wrote to the Dr who diognosed my PA, no response , then I wrote to the practice manager she had a doctor ring me, at first he tried telling me a test done in 2014 was negative however he relented & I got my next! injection, when 12weeks later I tried to book my b12 the receptionist put me on to a clinical technician who told me I could store b12 for a year so wouldn't get my injection, I objected & tried ringing the surgery the next day but was again put on to a doctor who told me the same thing you can go 12mths etc, I got my injection after a lengthy discussion , & at this point I wrote to the patient liaison officer, who just told me in a letter that as I hadn't had stomach surgery........this brought me to February this year, again when I tried to book my b12 I was put on to the clinical technician who has stopped my injections telling me as I've said , that as I don't have a history of stomach surgery etc I've never had PA, she has prescribed b12 tablets.........phew
Hi,
Have you drawn their attention to the risk of permanent neurological damage if under treated?
Neurological Consequences of B12 Deficiency
PAS news item
pernicious-anaemia-society....
PAS article about SACD, sub acute combined degeneration of the spinal cord
pernicious-anaemia-society....
Blog post from Martyn Hooper's blog, mentions SACD
martynhooper.com/2010/09/21...
B12 article from Mayo Clinic
ncbi.nlm.nih.gov/pmc/articl...
Table 1 in above article is about frequent misconceptions about B12 deficiency.
Article suggests ....
1) No proof that oral b12 is a good at treating B12 deficiency as B12 injections
2) Many current tests eg serum b12, active B12, MMA, Homocysteine, are not totally effective as diagnostic tests for B12 deficiency.
3) Successful treatment should not be stopped
Another article about SACD
hindawi.com/journals/crinm/...
Some links about oral B12 treatment
The evidence that oral treatment is as effective as IM injections is poor in my opinion.
See links below.
cochrane.org/CD004655/ENDOC...
pubmed.ncbi.nlm.nih.gov/295...
smw.ch/article/doi/smw.2017...
PAS news item on Oral Tablets
pernicious-anaemia-society....
Link aimed at health professionals about oral B12 available in UK.
sps.nhs.uk/wp-content/uploa...
Mentions a 1mg oral cyanocobalamin tablet available to prescribe in UK from May/June 2020.
Informed Consent
My understanding is that GPs cannot impose a major change in treatment unless a patient has given informed consent for the change.
As I understand it (I'm not a scientist or medical professional or legally trained)this means that GP should have discussed the pros and cons of changing to oral treatment with you, made sure you understood the issues with enough time to consider them and got your agreement before they changed your treatment.
If unhappy with a change to oral treatment, might be worth pointing out in any letter to GP that informed consent for the change in treatment has not been given.
I suppose GPs might argue that changing from IM injection to oral tablets is not a major change.
If the change to oral treatment is part of a study the GP surgery or CCG/Health Board for the area is taking part in, has this study got "ethical approval"?
You might want to ask if you are part of a study and if you are, you might want to ask further questions about whether the study has "ethical approval" from an ethics committee.
Most studies involving patients need ethical approval.
BMJ article on ethical approval from 2009
Responses to recent BMJ article- some show the attitude of some GPs to changing patients to oral B12 treatment
bmj.com/content/369/bmj.m13...
The UK area in next link has guidelines that seem to put most people onto oral B12.
b12deficiency.info/blog/202...
For anyone else reading this thread from UK who feels pandemic is affecting their treatment. See links below.
clivealiveForum Support
Personally I had two thirds of my stomach removed at the age of 17 in 1959 due to a burst ulcer but it was not until 13 years later in 1972 that I was tested for (by a Schilling test) and diagnosed with P.A.
Good morning, I'm thinking that although your operation was quite a few years ago, it wasn't thought to be the reason you got PA,given the years that passed after your operation to being diognosed,though I know from experience it can take years to get diognosed, the clinical technician is telling me that new medical science proves (?) the connection between stomach surgery and PA & if you have never had stomach/bowel surgery you can't have PA....just! a deficiency, & to be honest the way she said my PA was really a deficiency due to dietary reasons was quite derogatory.....or is that just st my imagination....like how I imagined I had PA. Thank you for your input into this question I'm seriously asking.
I just keep thinking about the preposterous stuff that you have told us . Do send a copy of your letter to our Chairman — Martyn Hooper , Level 4,Brackla House , Brackla Street , BRIDGEND, Wales . CF31 1BZ . Tell him what’s happened to you . This will go down in the PAS archives as to what can happen to P.A. patients because of the ignorance of so many doctors about Pernicious Anaemia. He can probably help you too , especially as you are a member of the society .
Good morning, Yes I have already sent a copy to Martyn, as you say it helps! to show just how indifferent PA patients are treated......
It’s not just indifference that is so terrible . IGNORANCE is really DANGEROUS . P.A. is not called PERNICIOUS for nothing .
..which is probably why one of the responses on Sleepybunny 's second BMJ link above calls for patients not to be told they have pernicious anaemia at all !
Great also that 156 appointments with nurses over two practices were saved over the course of a year, though- by putting patients onto tablets for "failing" the anti-intrinsic factor antibody test . The real cost to the NHS by doing so will no doubt be massive: for neurology, haematology, gastroenterology and others some way down the line.
Health cost to the patients clearly not factored in at all - instead, talk of clearing the decks for other (more worthy ?) patients to get the additional annual 13 hours* of appointments with a nurse over two surgeries !
Honestly, sometimes I don't know whether to laugh or cry about all this - got a feeling that if I started doing either, I might never stop.
* based on the five minutes it takes a nurse to inject B12.
Irritable bowel here, colitis twice, diverticulitis-one even ruptured
What is it with ...the majority it seems...of the medical profession that they don't understand why the b12 injections are so important. .....& why are we often made to feel a nuisance when we try to get them 🤔
Hi,I was diagnosed with P.A. in 2000 using the Schilling test at Addenbrookes hospital. I have never had any surgery or crohn's. My Dr said to me that I no longer had P A and wanted to stop my injections having had a b12 test and a negative IF test. However I dug into my records and found the letter from Addenbrookes stating that I had PA and needed injections "for life" and that b12 tests were no longer needed as they would give false results. The doctor then reinstated my injections!
However at the start of the pandemic, they insisted on giving me the b12 test and again said that I did not need an injection.
I then thought it was better to save the fight for later and I told them that I was not prepared for my levels to drop below the limit before they would give me the injection. So I told them I would self inject. They asked me how, and I said I would get supplies from Germany and just do it my self!
I have not heard anything from them since last Easter.
Do come back to this forum and let us all know what happens.
Do not let your levels get low
Tony
Hi, that is a very interesting post, a lot is similar to the issues I'm having with my doctor's surgery......just like you I have been told I don't have PA firstly they said it was because of a test I had in 2014.....I did point out that I wasn't diognosed until 2018....fell on deaf ears ...they! then say my last b12 result was good, I say well it will be after two & a half years of receiving b12 injections, so then the real mind blower.....she tells me I've never even had PA......It's atrocious how we can be treated like this.....& If I've never had PA why did the doctor at the time tell me I had...& why have I had injections for it etc.....& by the way, when they first tried stopping my injections I too said I would self inject they then quickly told me I would still get my injections,
I'm speaking to someone later today about whether to make a complaint ....I will definitely post what happens.
"I'm speaking to someone later today about whether to make a complaint"
Good luck with whatever you decide to do.
If it's PALS, I hope they are helpful, I found them ineffective.
nhs.uk/nhs-services/hospita...
Some people on here have had assistance from PAS and B12 Deficiency Info.
CAB (Citizens Advice Bureau) have a lot of useful advice on their website about making NHS complaints.
One thing I would suggest is that you get copies of any medical records/test results you think will be useful before starting the complaints process.
Have you ever considered going to the press?
This is likely to upset GPs and sour the doctor/patient relationship but it has worked for some people.
See links below.
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...
Story about MP in Scotland who raised concerns about treatment of patients with PA
douglasross.org.uk/news/mor...
Have you considered talking to your MP?
".It's atrocious how we can be treated like this."
I agree...the Blogs listed below have many similar stories.
UK B12 Blogs
Martyn Hooper's blog about PA
B12 Deficiency Info blog
There is no P.A. test . What is thought of as such, isn’t a P.A. test ( intrinsic factor antibody test ) Thats all it tests —- -the I.F. antibodies . They do not always appear in P.A. patients . We were both lucky enough to have them ! .They couldn’t care less about us . They want to get rid of the bother of giving us that very cheap injection. Yes of course there is the 5 minutes of the very expensive? nurses’ time as well . If there were a very expensive drug available from a big Pharma company for dealing with Pernicious Anaemia, that would be given us without a problem .Why? — I leave you to work that one out .
"My doctor said to me that I no longer had PA" :Amazing/ appalling that your GP believes there is a cure for pernicious anaemia, or that it can just go away !
The only surgery on the stomach I have had are removal of my gall bladder and my appendix.
I too have had my gall bladder removed it was many years ago now, but I've looked up & read as much information I can find about whether that has any impact on b12 deficiency/ PA, it seems a lot of British medical articles says it can cause loss of B12 absorption, but any american medical information I read says no...it doesn't affect B12 etc (this often pops up even when you don't search for it) 🤔
Hi Coxbox,
There is a PAS support group in Gloucestershire. No face to face meetings at moment.
I know that the anaesthesia can reduce B12 levels, and I’d had a few investigative procedures before the gall bladder was identified as the problem. Then within two years I needed my appendix removed. So yet more anaesthetic! The PA only appeared within a few years of the last surgery, and must have been coming on gradually as my levels were falling.
General anaesthetic shouldn’t be a problem with B12. It’s only nitrous oxide (gas and air) that can cause problems as it inactivates B12.
Some of the diagnostic procedures prior to each operation used gas & air.
A few links about Nitrous Oxide
Nitrous Oxide
gov.uk/drug-safety-update/n...
NICE guidelines Nitrous Oxide ( see side effects section)
bnf.nice.org.uk/drug/nitrou...
Nitrous Oxide induced SACD
jneuro.com/neurology-neuros...
I have PA i also have stomach cancer and bowel problems my cancer was diagnosed 10 years ago and is managed by yearly removal of polpys
Good to hear you cancer is being managed 👍
My question arose because I'm being told by my doctor's surgery that you can't have PA unless! you have had stomach surgery......
Yes I fit precisely into that category I experienced bowel surgery with resulted in two temporary stoma's latter reversed with plastic surgery included.....Couple of years later I was diagnosed with PA...Now for some years after the surgery I was prescribed proton pump inhibitors (Omeprazole) to help control my bowel condition, now these drugs are over the counter in the USA and there is some research in the USA that indicates a link between extended use and PA
I've never had any kind of surgery, but in my case it's likely genetic as my grandma also had PA from a relatively young age. I'm pretty sure she also didn't have any stomach related surgeries etc either, so you could count two of us!
Yes, my doctor at the time, told me PA can be genetic, I asked the question on here about who had stomach surgery or Crohn's type of condition, because a clinical technician at my surgery told me I've never had PA simply! because I've never had stomach surgery etc ......my injections were stopped after 2 1/2 yrs , I'm awaiting answers to my questions as to why they say PA can only exist in patients with stomach surgery history, I've asked those questions via an advacey person as my doctor's surgery just keep repeating the same thing without answering my questions....... 🤔
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