we are looking at all our patients on B12 Injections; hence it is necessary that we check your current B12 levels and check for for Pernicious Aneamia which (is inability to absorb from your stomach)and
So that we can continue to adminoster injections to those that have positive antibodies and advised to switch to oral B12 supplements to those whose antibodies ard negative.
Excessive B12 can cause agitztion and anxiety;hence doing more harm than good if you ate on injections for he wrong reasons.
awesome will be sending you a blood form to do Intrinsic factor antibodies and current B12 levels.
Thank you for your cooperation in this matter.
signed bh my ' chosen'Gp
I'm so tired of this
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Nackapan
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Truly outrageous ! It’s a well known fact that about 50% of PA patients test negative to Intrinsic Factor Antibodies ! No amount of B12 causes agitation and anxiety . This surgery should be asked to read some facts about Pernicious Anaemia. They should be referred to a higher authority , who can correct their terrible errors . Ask them where they found this erroneous information ,and ask to see it . …..
I think it is fairly clear to all of us what would be the main cause of agitation and anxiety in situations like this !
No evidence for this being related to B12 at all. Just as there is no evidence for agitation and anxiety being related to B12 addiction (yes, I have been told that it is "highly addictive" - by a haematologist !) - and for the same reason : it isn't true. Another two symptoms of B12 deficiency being erroneously attributed to B12 "side effects".
Nackapan - This incessant requirement to justify your need for B12, particularly when you have three generations of women in your family with this need, and when your practice has failed to help you to find (or rule out) any alternative answers, should they still believe one can be found.
Your practice has lately made enquiries from a neurologist that you had never seen regarding continuation of injections, despite a previous neurologist's advice to administer B12. This did not produce the result they wanted.
How much money do they want to waste, trying to get someone, anyone in secondary care to take the responsibility of saying "no" to you ?
They have seen you enough times to know you have a set of problems that has never entirely gone away despite all your efforts. They have even said that your's is a "complex case" : a case of what exactly ????
They cannot possibly rule out PA by IFab testing. 40-60% of those with known PA will not test positive for intrinsic factor antibodies. I know you know that. There is plenty of proof of this. Martyn Hooper himself is proof of this !
It's like going to Silverstone, going around in circles.What they are doing to you is causing stress and further anxiety.
I could write more, but I will refrain from doing so.
PS don't for get your crash helmet when you go again. Lol
We are having trouble with our surgery too, twice turned up to be told all appointments cancelled, Now tried to telephone them and they are closed told to go to nearest surgery!! (Suspected things were not right for a while now).
Yes PAS should know about this and be able to correct their erroneous and ridiculous assumptions about PA It’s in the guide lines that B12 levels need not be checked once treatment starts FOR LIFE . Levels have to be kept high . and it is also acknowledged that I.F. antibodies do not show up in about 50 % of PA patients . They have made up the whole letter without any reference to any scientific guidelines .
"Excessive B12 can cause agitztion and anxiety". Maybe with methylcobalamin for some.... but I've not heard of this happening with either hydroxo or cyano, which are the standard treatments. Such nonsense. Is this more penny-pinching at the cost of people's health?
Nackapan, just posted leahasophiagrace has just printed blood tests results and it says NO IFA results done as they are not reliable. Perhaps this might help.
What I suspect Leah's report actually means is 'We don't do this test any more because it only finds 50% of PA patients and costs money to perform.' This isn't quite the same as 'not reliable' in my book.
If we can put a handle on 50% of PA patients because they have positive IFAb results then surely that gives us more time to concentrate on the other 50% as the 'Positive IFAb' group can simply be prescribed B12 injections?
It's shocking. We know the ease with which B12 injections can be given. The 'training' needed too. It's virtually the old 'see one, do one, teach one' approach. When I broke my ankle last year, I was put on Subcutaneous Low Molecular Weight Heparin, one injection per day, for the duration that I had the pot on. The 'training' was having the first one injected, the prescription to go and collect, and a mini sharps bin. IM B12 is a bit more technical, like reasonably sterile technique, how to get the stuff into the syringe and how to get it out again [ouch] but it's not that difficult. However, nurses are getting more and more stuff loaded onto them, and there's only so many hours in a day...
I'm neither defending nor attacking anyone, but as I said, it's shocking.
I'm certainly up & about, and my broken ankle is now better than the other one! [that's another story, but I suspect I got a reaction to the second covid booster, but the oedema is now largely sorted.]
I don't think I missed a single opportunity to put my two penn'orth in, even with a backslab, pot, or walking boot.
Yes, nurses get a bum deal. Someone told me a long time ago that surgeons do the cutting bit, anaesthetists put you out, and nurses stop the other two from killing you.
The worst thing being 'what's causing it?' and then your flight of fancy knows no limits. Heart failure, DVT, secondary deposits in lymph nodes, etc etc. Then stop to think 'But I'm feeling fine' and a few days or weeks later, the oedema subsides, the ultrasound was normal, the echo was normal and so on. Thank goodness, that seems to be the way with me!
Hi. Thank you, ankle is fine. [Anyone want to take a walking boot off me?]
You're right, the injection takes very little time [or skill?] but it takes longer to argue why not, than simply get on and to do it.
If we had bus shelters, I'd be happy to take over one and set up 'Anything with a hypodermic needle! Come on down!' but I suspect I'd be locked up before tea time.
You're right. PA is due to changes in the stomach.
There is however little doubt that some patients CAN absorb oral B12 despite the changes in the stomach, providing that the B12 dose is sufficient, and that's far more than you'd find in multivits or a normal diet. It doesn't work for everyone, and I don't know why that should be either.
One of the problems we face is the use of terminology. Pernicious Anaemia is a specific condition due to changes in the stomach. Megaloblastic Anaemia due to B12 deficiency will include many PA patients, but some may be due to a simple dietary deficiency. A strict vegan diet without B12 supplementation may lead to B12 deficiency, and that deficiency may lead to a megaloblastic anaemia, but that's not the same as PA.
Or due to surgery ? I had Ileo-caecal TB resulting in a hemi-colectomy - so no Terminal Ileum where B12 is metabolized. That was back in 1973. My B12 knowledge was only gained much later - 😕
It often concerns me that with so many gut disorders - IBS/Colitis/Crohns etc that B12 is not high on the agenda as a routine test.
Then the cynic in me realises that there is money to be made in prescribing lots of pills and potions. Similarly with diagnosing and treating the thyroid. Better to prescribe blood pressure pills/statins/anti-depressants rather than diagnose a thyroid issue to be treated with an inexpensive pill.
I have Hashimotos/Crohns/B12 issue - all self treated !
Our friend J had crohns, classic symptoms of B12 deficiency, not given B12 after passing dementia test. Passed away due to stroke and bloods clots everywhere in her body !!!
I posted here on the forum of her struggles.
I am angry what happened to her and still miss her.
So very sad to read about your friend. Doing my best to avoid both - especially having bought/read the White Paper produced in May 2020 by the Alliance of Natural Health - discussing auto-immunity and the v@xxine 😪
Spot-on. Remove the terminal ileum, there's nowhere to absorb the B12 from! You've been sensible and lucky to have done your own research, and here you are, decades later. Well done.
It was a long journey ! I had 6 monthly check ups with Crohn's Clinics for years - not once was B12 mentioned. I was diagnosed with Hashimotos in 2005 on moving to Crete and joined Thyroid UK in 2011. Only then did my journey of discovery begin - which in turn lead me to this forum. As I hurtle onwards I am hoping I can still navigate my on-line purchases - if allowed !!
I'm soooooo sorry they're doing this to you. I agree, totally outrageous!!! And in total contradiction to the neurologist. I weep for their other patients.
I can't add anything to the already excellent advice. Good ideas to contact PAS. Sending you many many best wishes 🙏
I am so sorry you are going through this. When it happened to me 3 years ago the anger frustration and pure disbelief in the professional ignorance made me so I’ll. i wrote letters as advised on here to the practise manager etc and got no where so I have been self injecting ever since without the gp monitoring. You can’t educate stupid.
Wow, see I never knew that! This is why I like this site you learn something new everyday, they told me my partial antibody test was negative so I do not have PA learnt that’s absolutely incorrect as well, I’m glad you got your diagnosis, did they give you treatment straight away?
He said Gp would know what to do!Then saw my endocrinologist who said to go by the numbers as usual! He’s not a symptom believer.
Gp did three injections over three weeks then stopped for a month and then prescribed another three over six weeks. At that point I started following the guidelines for symptomatic PA myself, 4 months on and things are changing and slowly improving.
That seems logical to me, but I've never heard it said. If GPC are no longer functioning, or GPC Ab present, then surely there will be little or no IF so why would they find IF Ab?
That’s exactly what the physician said, no intrinsic factor so no way it could produce antibodies. He said healthy people will always have some antibodies in a blood test. That’s why there is a “normal”range.
Unbelievable seriously, the whole system is corrupt, they do what the hell they like when they like, we should organise a March a massive awareness campaign!! file law suits against the buggers, failure to treat, failure to diagnose, psychological distress, etc etc! It’s the only way to get them to listen hit ‘em where it hurts MAYBE just MAYBE they might think twice about pulling this Sh;t again! Something has to change, “ it causes agitation and anxiety” Total BS! They are confused it’s all the unnecessary antipsychotics antidepressants needless angina pills etc they give out like smarties that causes that! They are deluded! And talk absolute 💩sorry for rant but as you know I’m in the middle of this 💩 show myself, it’s an establishment, they close ranks if you dare to stand up to them or complain, we need to get a movement going a March, demonstration anything to balance some of this disturbing power they think they hold over our health 🤬
Oh dear oh dear oh dear. Or do I mean 'Hell Fire'? Please bear with me before you start firing off missiles at me...
Reading between the lines, "we are looking at all our patients on B12 Injections"
[Which might mean we have just realized quite how many of you are on B12 injections!];
"hence it is necessary that we check your current B12 levels"
[No it isn't! If you're on B12 injections then the level will be raised. If it isn't raised then where's it going?]
"the injectionand check for for Pernicious Aneamia which (is inability to absorb from your stomach)and So that we can continue to adminoster injections to those that have positive antibodies and advised to switch to oral B12 supplements to those whose antibodies ard negative."
[This looks like the ramblings of someone who doesn't understand, because we all know that only around 50% of PA patients have IFAbs, however by doing this they'll get a short term gainand a massive reduction in B12 injections. There is little doubt that some patients on B12 injections could manage on oral therapy but the truth is that there isn't an easy way to identify these. Of course, once you stop their injections, the ones who need them will become increasingly ill and will need to be re-started.]
It might be worth asking 'Is this a recognised, supervised clinical trial that has been approved by the Ethics Committee?' or words to that effect. If the answer is 'Yes, of course it is' then I'm sure the surgery will be happy to share the documentation with you. If, of course, they go all coy and start dodging the question, or being rude and dismissive, you've got your answer.
Yes. But without the risk of having B12 injections stopped suddenly because some "new research" has apparently appeared to justify removing access to treatment .
Whilst being a humble scientist and therefore unable to comment about such things, I wonder who is behind it, who wrote it, and what they'd do with the results! But I can't even think those things.
Simple answer Cost Cutting, forcing people to purchase there own.
Which is acceptable if 1. You could buy B12 Ampoules over the counter in the UK. 2. You are in the know. 3. You can afford it. 4. You have access to the internet.
What about all the old folk who are surviving on a pension, choosing between eating and heating.
As with with the results it is probably about ha we've saved X amount of pounds over the year let's have a christmas Party.
Has anyone ever recovered from Pernicious Anaemia? I think not.
If people have been diagnosed with PA they have PA. Or the diagnosis was wrong. Are they really saying that ALL their diagnoses were so poorly controlled they think a significant number were wrong? (Or, for patients who have moved into the practice, they don't trust the previous doctors.)
That "hence" in the first sentence is a non sequitur. They can look all they like at B12 patients without it being a logical consequence.
The "So we can" is also a non sequitur. They can continue without doing any testing. It is their decision - not a logical consequence.
I searched PubMed for "B12 agitation" and found 12 papers - not one of which supports the claim of causation - some referred to B12 deficiency. Not excess.
I searched PubMed for "B12 anxiety" and found 122 papers. Of those I looked at (was rather boring!) - several referred to B12 deficiency. Not excess.
It's a bit like calling in all one-legged patients. And checking that they really need prosthetic legs. If they stand against the wall, they get their legs taken away.
Very nicely put, Helvella! Any who had recovered must have been misdiagnosed.
The 'raw liver' therapy held it at bay and earned Nobel Prizes. Interestingly, the 'Raw Liver' is likely to have been the equivalent of mega-dose, oral B12 without IF. This has always fascinated me.
'Informed consent' is always worth stressing, with 'am I doing this for you, or are you doing it for me?'
Your one-legged study is good.
My 'Horse diet is another'. How much does a horse actually need to eat to stay alive?' So, start measuring the input into the horse, and every two weeks, halve it, until you find that the horse can survive on nothing. Unfortunately, however many times we tried, something always happened and the horse died before the end of the study.
Very sorry to hear this Nackapan!I had similar a few weeks ago but mine was a phone call to ask me to come in for a test to check my levels.
I know which GP asked that I be tested, but on my face to face to discuss the results with a different, better educated GP, I got mine changed to 2 monthly from 3.
As others have suggested, contact the PAS so they can try to educate your surgery and to help alleviate what is a very stressful time for you. Good luck and I hope you get this resolved ASAP.
Nackapan, So sorry you are having to deal with the ignorance of these healthcare professionals who are "professional" only in the sense that they are being paid. I've read the responses to your post and don't have a lot to add other than to provide this report published by the Mayo Clinic in 2019 you may find interesting. You may want to reply to your GP with a letter and include this reference and asking them for the source of their data. Also ask them to include that letter in your medical records file.
The Many Faces of Cobalamin (Vitamin B12) Deficiency
There are numerous NHS pages (centrally and for individual institutions) which explain about the need for B12 injections after stomach surgery (almost entirely bariatric - but the principle is the same). Lose a large part of your stomach and you need injections.
Yet, from the letter, it appears those same people will be tested for antibodies and told they can take tablets.
I know of someone who has had this surgery and is also without a thyroid. About to be diagnosed with ADHD. Please could you point me in the direction of the information you have mentioned above - about needing injections after stomach surgery. Thank you. Happy to receive a PM.
I’m sorry to hear this Nackapan. Absolutely sickening. I’ve only been tested once for IFAB and the results were negative. My PA was finally diagnosed after I discontinued shots and went on sublingual methyl. I became the sickest I’ve ever been in my life and nearly ended up in a psych hospital without any prior psych history not to mention the physical symptoms—I was clearly anemic.. I got better with B12 injections. Based on that fact and the severity of my symptoms, my doctor diagnosed me with PA. It’s really not rocket science. B12 shots aren’t going to help anything other than a deficiency! It’s pretty simple. My anxiety and agitation eventually disappeared with ADEQUATE injections. The higher the b12 levels I have in my blood, the lower my anxiety and agitation. There is absolutely a direct correlation between b12 and anxiety but it is the opposite of what they are telling you and we all know it. Reducing the number of injections for me causes the anxiety to creep back in. I wish you the best of luck.
I've left some info on wedgewood 's thread"INTRINSIC FACTOR ANTIBODY TEST" that might be helpful.
I posted the info below on forum threads in the past.
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) this means that the GP should have discussed the pros and cons of changing to oral treatment with you, made sure you understood the issues and got your agreement before they changed your treatment.
I'm assuming you have not given informed consent to the change to oral treatment previously.
If you are unhappy with a change to oral treatment, it might be worth pointing out in any letter you write to GP that you have not given your informed consent for the change in treatment.
( GPs may argue that changing injections to oral tablets is not a major change in treatment)
Keep a copy of the letter the GP sent to you, in a safe place.
It might be useful in case there is a need for formal complaint in future.
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.
Auuuuurgh EXACTLY. As I keep saying, all we are arguing about is ** MODE OF DELIVERY **
It kills me that they talk about how it's bad to overdose on B12 injections but they will readily suggest you take several 1000mcg tablets a day. $!@^%&@$#!
I am so sorry to hear that you are having this completely unnecessary battle with your surgery once again!I had blood tests taken for possible inflammation markers a few weeks ago as I have suspected Sjögren’s. Despite me asking the GP previously to not keep testing my b12 as I have proven PA they tested once again without asking me. I had self injected a couple of days previously so of course it was high, although not as high as I expected.
I’m expecting this to be brought up by the GP but so far haven’t heard from them so I’m hoping that maybe they have overlooked it.
Hoping that you’ll be one of the 50% or so that has a positive antibody test 🥰
I believe there are two ideal scenarios that would change things for the better.
1) Injectable B12 is made available OTC in pharmacies like Boots. When it's given, instructions on how to inject should also be given. Perhaps an instructional video.
I do understand that this has been lobbied in parliament to no effect. Or seen as 'a woman's problem'. Whilst we cannot re-educate Doctors, we can shame our medical system into recognising how backward we are compared to Canada, Germany, many other countries with progressive views that trust people to inject themselves sensibly, when given instructions.
This then saves the nurses time and the NHS cost.
2) We rebrand 'Pernicious Anemia' and call it autoimmune gastritis. We need to let the term Pernicious Anemia fade away and die, I'm afraid. It is not Pernicious if you have treatment. Sure, some people will die but we are not living in those times. We need to move on from the term since medics REGULARLY confuse it with B12 and folate deficiency anemia and/or megaloblasting anemia.
Pernicious Anemia is not a fit for purpose term. Automimmune gastritis makes it clear that there is an autoimmune problem in the stomach. And the solution is injectable B12 over the counter, like they do in civilized commonwealth countries.
We are the 6th richest nation and the 6th stupidest when it comes to healthcare. What happened to the UK? State of this country gets me down.
Yes, correct. The doctor is claiming excessive B12 can do harm.
To be clear, there is ZERO evidence - on the entire planet for as long as B12 has been investigated - that large amounts of B12 - whether injected or ingested - is harmful.
I LOVE this idea! B12 needs to be put on peoples' radar as it certainly isn't on doctors' radar. For Pete's sake, how many of us suffered needlessly for years (and went through years of tests and a ton of expense) only to find out it was B12 deficiency? I try not to be angry about it, as the anger is not productive for me, but I am trying to spread the word. My sister recently visited and complained multiple times about "burning feet". She was very dismissive when I told her she should be checked for deficiency or at the very least, start oral supplementation.
Looking at the number of replies - you've opened a can of worms!
The only thing I can add is the letter I would be inclined to send to the doctors. I wouldn't be filling in that form. (I'd probably tweak it after some thought but this is the jist)
Dear chosen doctor
I am so pleased that you have sent this information in writing as it will make the court case so much easier not to mention cheaper for the tax-payer when you lose.
In fact I suspect a class action would be possible as this will affect at least 2% of your patients.
Why am I so sure of winning a court action? Your letter explains your reasoning for your proposed action. Those reasons go against NICE Guidelines which are referenced. Added to these references are many others freely avaliable on Pubmed etc.
You mention agitation and anxiety. Letters like this guarentee patients will suffer these symptoms - it won't be caused by too much B12
I suggest you quietly drop this proposal which is full of inaccuracies.
I'd be thinking about adding a PS saying I will hold them responsible if I suffer SACD, sub acute combined degeneration of the spinal cord and include quotes from UK B12 documents and PAS articles about SACD.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
)
I wrote a letter, and this is what I got back. 
PPI's and Nitrous Oxide....can anyone help!?
Reference for not testing once b12 injections started? Threatening to stop injections due to high b12 levels in blood test.
B12 frequency & levels
