Hi, a quick recap as I've posted on here about this before,
I was told I had PA by a doctor at my local surgery, I went onto have B12 injections for over two & a half years,then ......the pandemic hit, I battled for my injections for a short while before I was told I didn't need them as I didn't have PA because I've never had stomach surgery or suffer with Crohn's, knowing that the Pernicious Anemia Society don't support that (yes I'm a member) I wrote to the doctor who diognosed me with it,no response,I also wrote to the practice manager who got a clinical pharmacist to talk to me on the phone, she said I could store B12 for up to a year & I could get oral b12 from the internet, I didn't agree with that & rang the surgery again hoping to get my injection, however the short story is the same clinical pharmacist said she was leaving me a prescription for oral b12 as a test I had back in2014 for PA was negative, again I'm being brief, I made a complaint to the NHS through an advacey, finally after 7+ mths I have their conclusion, that I don't have PA because the test in 2014 was negative & they say that if that test was repeated today! it would probably still say negative, as my medical records only say 'tired recommend B12 injections' & nothing else regarding PA it is deemed I was confused, no I wasn't I still clearly remember the day the doctor told me I had PA , he also said my children should get tested as it runs in families & that I should be ready for a lifetime of injections,
So,that's it I don't have PA I'm on oral b12 tablets from the doctor as it must? be down to my diet? & interestingly while my complaint was being investigated I have developed hypothyroidism, so I'm sat here at home wondering if I'm losing the plot.
Good luck everyone.
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Mewsmom
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Why is such a battle all the time, I really can’t understand it, it’s so frustrating and infuriating that we all have to fight a battle just to get such a simple injection that can help so many people to feel well again! Don’t give up!
Even for the everyday man/woman on the streets its a minefield trying to understand who and who doesn't need these injections, and I feel while the pandemic has been on, these doctors have been 'looking' for something to do perhaps.But if your symptoms come back or worsen are you then going to get these injections again?
As for various conditions to warrant the injections, medication can cause B12 issues, and I believe having to many general anesthetics can also contribute to having problems, so its not always down to diet alone, yes , stomach problems are a cause, and I don't know how far back it can affect you, I've had ulcerative colitis as a young man, but have had numerous other problems with my stomach since, and take omeprazole on a regular basis, and these can also cause recognised problems along the way, I feel perhaps it's a grey area to many doctors may not understand, and if the figures look okay on their screens, well , you're perfectly healthy then, hmm, that's when all of our symptoms come rattling through with a vengeance, not a good sign,what a nightmare 😬
I totally agree that PA is a grey area , to most of the doctors I've come across at least, I've quoted this on here before but when I told the clinical pharmacist that the Pernicious Anemia Society don't agree about stores in the liver can last a year or so she replied......who are they? a group of your friends.....
If the Pernicious Anaemia Test comes up negative, it is NOT proof that you don’t have P.A, . About 50% of P.A. patients test negative . Doctors should know this . If you do not respond to the tablets , you must get B12 injections . ( you can self-inject if it is impossible - you can find about it on here ) . Autoimmune conditions rarely come alone". Autoimmune thyroid conditions are a common “ companion “. to P.A.
Well i do hope that your doctor does get him/herself educated about P.A. Its outrageous how P.A. patients are treated( or not treated , as the case may be)
Pernicious Anaemia is the most common reason for B12 deficiency
An incurable autoimmune condition which needs life long B12 injections . Some patients are able to benefit from high dose tablets in between injections ( sub-lingual ) and from B12 nose spray . On this forum it seems that these patients are in the minority .
Followed by diet ( strict vegetarian or vegan diet without supplementation of B12 )
Certain medications for diabetes, e.g.Metformin is just one
Proton pump inhibitors e.g. Omeprazole .and other medications that neutralise stomach acid
Extended release Potassium products
Continual use of certain antibiotics eg neomycin and some others
Abuse of Nitrous Oxide( laughing gas )This gas is often used by dentists and in child-birth .
Some anti-convulsant medications ( to treat epilepsy )
Fish-tape worm ( raw fish ,Which has not been frozen ) inadequately smoked smoked - salmon )
Stomach surgery
I may have forgotten some reasons for B12 deficiency , but there’s lots of information on the internet !
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As we age , we produce less stomach acid which is needed to help absorb B12 . so supplementation may be necessary .
The usual test for B12 is the blood serum test , which includes inactive B12, which we can’t absorb - up to 80% !
So this test can’t be relied on to give the true picture .
B12 deficiency raises the level of Homocysteine in the blood ( can damage the lining of the arteries )
Folate ( in green vegetables ) called folic acid -Vitamin B9 - in tablets , is needed to work with B12 .
B12 single use ampoules are actually cheap to buy from German online pharmacies ( no prescription required in Germany) I’ve not seen a packet of 10
for more than £9.00 . So the NHS should be able to buy in bulk fir much less .
Pernicious Anaemia is not called
“ Pernicious “ for nothing . It is eventually fatal after many miserable , horrible years , if left totally untreated . Under-treating provides enough B12 to keep one alive , but not enough to allow one to feel well and lead a healthful life .
Sadly it's not just the doctor/s the NHS agreed that because I had a negative test result in 2014 I didn't have PA then ....or now.....it was actually 2018 when I was told I did have PA.....I'm just ....well dumbstruck with it all.
It's been a long time since the pandemic started so I assume it has been equally long since your jabs were stopped. What symptoms have you developed since the jabs were stopped? Write them down and present them to your GP, they should be investigating the cause of any symptoms, try a different route and ask to be referred to a specialist who deals with whatever your symptoms are.
This route may make take a while but it sounds like your fighting a losing battle with your GP, which is wasting valuable time.
They're just wrong! At some point my notes said that they offered me smoking cessation advice and treatment and I had refused to take it. I am probably the most anti-smoking person on the planet and have never smoked anything, ever!
They just write on your notes what suits them!
Good luck with taking them to task over it - at least you know you've got more brain cells and ethics and truth than they have!
Morning, I had that too I don't smoke it also said I'd had advice about my alcohol intake, I don't drink & never have, what I also found totally baffling was it was also said in the doctors response to my complaint, was the reason a clinical pharmacist spoke to me & not a doctor was because the surgery had brought more clinical care people in to take the load off doctors... .what load? since covid a doctor appointment is like finding gold..... highly unlikely.
Sounds like you have a very good case for claiming that all their records for you are wrong/inaccurate and being able to press for them and your care to be fully reviewed!
All this is very strange, all my medical records were altered. So say given advice on drinking and smoking.(when !) Tea total (no sorry coffee total)I had been on HRT, and was constantly being sick, it would last for days and then suddenly disappear, only to reappear. MY diet was good and eventually realised it was the HRT patches. on my next visit to the doctors I said I had found the cause HRT, which I stopped having.
Years later after getting my medical records it was recorded that THEY had stopped the HRT, All my records were altered .
I am appalled that the pandemic seems to be used as an excuse to stop b12 injections. I believe that too many medical professionals are not properly informed about PA and b12 . I also believe we need far more Endocrinologist skills, research and understanding.
Apologies for quick reply but I have visitors coming .
Links below are to forum threads where I left detailed replies with lots of B12 info which you may find useful eg more about causes of b12 deficiency, B12 books, B12 websites, B12 articles and a few hints on dealing with unhelpful GPs.
No, it's definitely not you that's mad Mewsmom ! I'm so sorry you've had to go through what I feel amounts to gas lighting, (not believing what you say, distorting and twisting the truth).
At the beginning of the pandemic last year, I was taken to hospital, (two doctors suspected Addison's Disease after a painful back injury, and constant nausea). Although initially treated kindly, my self treatment for PA, NDT for thyroid disease, Arnica/Rhus Tox for back injury was received with much eye rolling and scepticism. I was eventually given four long sessions of rehydration but, although scan, X ray, etc and other tests were carried out, no tests for AD were done !
When I later queried this and asked my surgery for a cortisol test, it was refused point blank....... It then became obvious they were undermining the initial symptoms and were only interested in going over past history in relation to thyroid levels, BP etc. I then wrote to the surgery, sending the link to PAS page for professionals and Dr Chandy's book, which explains the PA connection with AD in chapter 7 below ***.
I eventually received a reply offering to do the IF test but, in the meantime, had found profound relief from the terrible anxiety symptoms, hair loss, etc. with treatment from local highly qualified and experienced herbalist. By then the experience with the surgery was such that I will never go back.........
I'm afraid it's more important than ever to read the research, be assertive with your GP, and take charge of your own health if symptoms ignored,which is happening even more frequently now with T3 for thyroid disease and life saving B12 injections being denied 😱). Good advice to ask PAS to be involved.
It has taken me four years of self injecting e.o.d. to be able to lead a more normal life, which the medical profession deprived my close family member (also with thyroid disease and PA) through their refusal to read and believe research evidence.
Don't give up Mewsmum.
Very best wishes for better treatment soon......
...............................
PS For those interested in the adrenal connection with PA:
(Dr Chandy's book is available, chapter by chapter on line) 🤓😍
*** Chapter 7 -"Autoimmune glandular disorders with special reference to APS and hypoadrenalism (Addison's)", :
"Addison noticed that the adrenal glands were damaged in all the eleven cases of pernicious anaemia (PA) on which autopsies were performed at that time (Graner,1985, Pearce 2004). In other words, he had spotted a connection between vitamin B12 deficiency (manifested in the form of PA) and glandular damage."
Hi, yes I have in the past contacted Martyn Hooper, I sent an update to the PA office yesterday, I just don't understand why we are dismissed & in my own case told I got confused with B12 deficiency & PA...... patronizing or what.... 🤔
Hi Mewsmom I feel your pain. I have blood test that prove I have gastric parietal cells and IF abs but as B12, folate etc are in range GP says I have not got PA despite my documented symptoms. I was reffered to the hospital gastro team and given an appointment. Through PALS I asked if the gastro would consider contacting my GP to advise him to instigate B12 injections whilst I awaited my appointment in November. The gastro called my GP to discuss following which I have received a letter from the hospital affirming the GPSs diagnosis, stating that the B12 tests should be repeated every 3 months, if levels fall to repeat IFab and if positive then its possibly PA so no need for injections now and btw we have cancelled your gastro appointment as we don't need to see you, your GP can take from here. Complaint to GP and practice manager remains unanswered. NHS ombudsman says they allow a GP 6 months to respond to a complaint, that if I disagree with the reply, I must request a review which could take another 6 months and its only after that, that you can go to the ombudsman who btw have a backlog of 6-9 months. NHS England cannot look into it as I have already complained to the GP.My only hope is a private consult which I can hardly afford and even then, I am worried that they may say the same so I may remain undiagnosed and skint on top. The GP has also underlined that they are not obliged to accept any private diagnosis. The HDA is taking no more queries at this time. I wrote to my MP, no reply.
Does anybody know a PA sensitive private GP? Any where else we can turn?
Unfortunately, what is said verbally in the surgery or hospital appointment is often different to what is written on the records, is what I've found. Also I've just seen a relative's blood test result from hospital - says 'abnormal', but GP has put 'normal' in their record for the same test result.
Legally, you are entitled (or were: it may have changed) to add your comments to the record. I have done this when at a smaller more sympathetic surgery. So if you go back to your record for when you had your PA diagnosis you could ask them to add your version of events. Which could include the statistics on the inaccuracy of PA diagnostic tests which means you can test negative but still have PA (as Wedgewood explains). I believe Martyn Hooper tested several times negative before finally getting a positive result. So one test result is both inaccurate and inconclusive. And yes if tested again you might still be negative, but this doesn't mean you don't have PA.
It's very hard to know or understand what on earth goes on with GPs in primary care that causes this kind of behaviour from them. If we knew that, it might be easier to manage and understand. Increasingly they don't seem to have the autonomy to make decisions and prescribe/refer/test as they would wish, but as instructed by the Govt, who as we know for a long time have been quietly privatising our NHS.
I'm quite deflated at the moment, I recall practicly every word the doctor said to me the day he said I had PA , well you don't forget being told you have a condition that will require injections for the rest of your life, I'm waiting now for a response from the advacey to what they think could be the next step! But without a full record of what I was told that day 🤷....it's a battle we could all do without.
Absolutely, it's hard enough having a medical issue without being gaslighted about it as well by those whose job it is to help you. Good that you have support here so you know it's not just you it's happening to.
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Hello glad I have found this site...
B12 Levels How quick can they fall?
End of the NHS road - I need to inject myself
Where do I go to?
