letter just recieved : we are looking... - Pernicious Anaemi...

Pernicious Anaemia Society

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letter just recieved

Nackapan profile image
92 Replies

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 profile image
Nackapan
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92 Replies
wedgewood profile image
wedgewood

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 . …..

Cherylclaire profile image
CherylclaireForum Support in reply towedgewood

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

Good job you are experienced in this.

Nackapan profile image
Nackapan in reply to

I'm weary and upset by this.

The ignorance

The cruelty

I could go on .

Awful letter.

Will be speaking to one of thr partners that insisted on getting a neurologists advice.

He got it .

My b12 injections are to continue !!

I will contact PAS .

Oh missed helpline hours !!

Never used it before .

They shoukd know though

in reply toNackapan

I can imagine, why won't they let things be.

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).

wedgewood profile image
wedgewood in reply toNackapan

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 .

Nackapan profile image
Nackapan in reply towedgewood

Yes.

I'm furious AGAIN!!

Which is no good for me.

Everyone on B12 getting that letter.at our surgery.

Very worrying.

Only just got my mums to e monthly too.

Different surgery!

Hope not in soame group.

Vonnie-72 profile image
Vonnie-72

Unbelievable! Sending hugs.

Technoid profile image
Technoid

"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?

VellBlue profile image
VellBlue

Hugs, sympathy and strength to you. X x x

Pickle500 profile image
Pickle500

Sorry to hear this additional stress for you.

Perhaps you should write back to say 'Thanks for this. But it's very stressful to know that you may be stopping my injections.

Stress is a known factor in the depletion of B12. Therefore, it's important to reduce and manage stress as part of my recovery.

Since I've identified this as highly stressful, I urge you to kindly LEAVE ME ALONE!

Nackapan profile image
Nackapan in reply toPickle500

Yes.

I need to deal with it .

So weary of this ignorance and stress.

Why didn't they do an IFAB test at the start?

They know not convlusive and do know so many other causes for not reaching level.

I've given food diaries when they thought it was diet related.

Didn't even look at them.

J was very ill with a b12 reading on 106 ( 200-900)

Only thing found.

And found late !

As fobbed off.

Told b12 for life.

2 neurologists sanctioned them.

1 persuading them eventually to let me self inject sc.

Nearly 4 years on

The neurologist still wanted me on an 'aggressive regime going by clinical symptoms.

As for levels ;

Unless I'd not had for 6 months .

What's the point.???

in reply toNackapan

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.

FlipperTD profile image
FlipperTD in reply to

Scientist, not medic.

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?

Am I missing something?

in reply toFlipperTD

Hi FlipperTD

No your not missing anything .... as usual lol

But, If, Only !!!!!!

Life was so much easier for people suffering,

Having to fight to get a relatively cheap injection.

Then to have it being taken away for more suffering does not make sense.

Who am I ??? Just a women that was fobbed off by the Medical Profession that even admitted to me they Knew nothing about B12.

"Am I missing something" ...... No, but we've missed your input lately ..... hope your keeping well.

FlipperTD profile image
FlipperTD in reply to

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.

in reply toFlipperTD

I quite agree!Nurses have got the raw deal.

Do hope you are up and about, and back with us giving your scientific knowledge for along time to come.....

FlipperTD profile image
FlipperTD in reply to

Dear Sallyann

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.

in reply toFlipperTD

Love it !!!

Oedema .... awful ... mum had it in both legs, sister also got it. Don't want to go into details.

Reaction to the second booster .... go careful, very Very careful.

FlipperTD profile image
FlipperTD in reply to

I'll be avoiding any more boosters for a while!

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!

in reply toFlipperTD

Good to hear you are very lucky!I assume you inject B12 !!

FlipperTD profile image
FlipperTD in reply to

Ha ha ha...

No, I don't yet. I don't have B12 deficiency, or PA, or not yet anyway I don't.

I'll get through my current nightmares and then progress...

Nackapan profile image
Nackapan in reply toFlipperTD

B12 can be done subcutaneously at home.'Off licence

It take very little nurses time if they don't argure about giving the prescription from a doctor.

Most are having 5mins 6x a year for an IM one.

Flu jabs are readily done in sessions.

The difference is a money incentive to get x amoung done to hit a target.

Taking 'nurses time' is wearing thin with me .

HC A can be trained yo give them and in the past I've had many done by them.

They just do them

And in my experience very well.

It's the lack of knowledge

Thd lack of interest

Which amazes me.

Our family have cost ghd NHS alot of money.

Our family have paid tgd cost of little or late treatment.

As I'm in it thd injustice is terrible.

The waste of b12 levels done ect a waste if money

As for the IfAB test icking up 50% is better than nothing.

As long as not used to stop injections if negative or retested until negative.

In this area I find it incredible thers no interest.

If its assumed b1e deficiency/ PA by symptoms abd you are treated as I was promised tgee is a slight excuse .

The current faceless NHS who depend on test results.

Rather than clinical picture they need to come up with more research ad to why we are being failed tine sbd time again.

My husband says if a higher % were men Tey might just sit up and take notice.

The male neurologist said the same.

He wax b12 deficient himself and could not nsnage on 2- 3 monthly.

I agree with you it's shocking.

Hooe your ankle healed okay.

FlipperTD profile image
FlipperTD in reply toNackapan

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.

shaws profile image
shaws

I always thought that people who had Pernicious Anaemia was due to having a B12 deficiency due to changes in stomach.

Therefore if B12 supplements are given they wouldn't be absorbed so the person would have regular B12 injections to keep good B12 levels for life.

My mother had Pernicious Anaemia and got regular B12 injections until GP told her - your bloods are fine now and you no longer need B12 injections.

My sister and I thought that was 'good' - little did we even think that medical professionals could/should make mistakes.

My mother - due to doctor's advice to stop B12 injections - developed stomach cancer !! and I will finish now.

FlipperTD profile image
FlipperTD in reply toshaws

Scientist, not medic.

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.

Marz profile image
Marz in reply toFlipperTD

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 !

Nackapan profile image
Nackapan in reply toMarz

Yes so many at risk nor being tested.I still think it should be on the blood form to tick!

Prevention or early detection saved billions .

in reply toMarz

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.

Nackapan profile image
Nackapan in reply to

I remember Never got s dementia test either or heard of it adxs reason nog tk give b12!!

Marz profile image
Marz in reply to

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 😪

in reply toMarz

Try reading (sorry no good at computers)Https://nimds.nih.gov transverse Myelitis

Everything applies to other half.

B12 Deficiency ... autoimmune

Marz profile image
Marz in reply to

Sorry - link not working !

in reply toMarz

OK google Transverse Myelitis then scroll down and you will see nimds.nih.gov website.

Interestingly if you can remember Oxford vaccine had to stop the trial due to one taken I'll.

She had this, further investigations revealed she had MS ..... which again is linked to B12

FlipperTD profile image
FlipperTD in reply toMarz

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.

Marz profile image
Marz in reply toFlipperTD

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 !!

jade_s profile image
jade_s

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 🙏

Litatamon profile image
Litatamon

Big fat sigh.

I am so very sorry Nackapan, that you continue to go through this stress.

Parlay profile image
Parlay

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.

Nackapan profile image
Nackapan in reply toParlay

Something needs to be done.Hoping PAs working with the new guidelines will help.

Yes I also self inject.

A mix of prescribed B12 and bought from Germany.

It's not in Mt mature to let this lie.

I do get your point of not making me more ill.

I'm as far as b12 go in a good position.

Just collected 15 prescription ampoules.

Devastating for those totally reliant on the surgery.

I vowed never to be in that position again.

This must be 5th or 6th tine now

' threatened '

The letter so flawed gives alot of amo .

I have time as plenty of B12 .

Also documented trial on tablets failed.

I made sure of that.

But did 'comply ' as was a trail to reduce injections I hoped would work !

At the tine aiming fir monthly b12 Injectiions.

Thunder storm welcome start to the day .

Marz profile image
Marz in reply toNackapan

So pleased to read you now have a good supply to give you piece of mind. So sorry you are having to battle ... 🌻

Scott-rock profile image
Scott-rock

That’s terrible, My intrinsic factor test came back non detected,

Physician diagnosed PA from that , said there’s no antibodies as I don’t make intrinsic factor.

Steph0077 profile image
Steph0077 in reply toScott-rock

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?

Scott-rock profile image
Scott-rock in reply toSteph0077

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.

bookish profile image
bookish in reply toScott-rock

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?

Scott-rock profile image
Scott-rock in reply tobookish

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.

Steph0077 profile image
Steph0077

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 🤬

FlipperTD profile image
FlipperTD

Scientist, not medic.

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 gain and 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.

Cherylclaire profile image
CherylclaireForum Support in reply toFlipperTD

Sounds more like "We are short of nurses" to me !

FlipperTD profile image
FlipperTD in reply toCherylclaire

That as well. And scientists. And doctors. And [you name it!]

Cherylclaire profile image
CherylclaireForum Support in reply toFlipperTD

...hospitals ?

FlipperTD profile image
FlipperTD in reply toCherylclaire

Them as well!

Marz profile image
Marz in reply toCherylclaire

In that case surely its time to ensure patients can self-inject .... Diabetics ??

Cherylclaire profile image
CherylclaireForum Support in reply toMarz

Yes. But without the risk of having B12 injections stopped suddenly because some "new research" has apparently appeared to justify removing access to treatment .

Marz profile image
Marz in reply toCherylclaire

AGREE !

Cherylclaire profile image
CherylclaireForum Support in reply toMarz

Well, don't we always, Marz ?Glad to know you are still dropping by !

Sleepybunny profile image
Sleepybunny in reply toFlipperTD

"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."

Good point, FlipperTD.

Nackapan profile image
Nackapan in reply toFlipperTD

Yes the whole letter is wrong.Reviews okay as individually seen .

Blanket scare mongering letters are not okay

Everything is wrong zbouf that letter.

FlipperTD profile image
FlipperTD in reply toNackapan

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.

in reply toFlipperTD

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.

Same with all businesses today.

FlipperTD profile image
FlipperTD in reply to

I couldn't have put it better. It has that feel to it.

helvella profile image
helvella

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.

FlipperTD profile image
FlipperTD in reply tohelvella

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.

in reply toFlipperTD

Then when things go wrong, inquest costing thousands of pounds !The forty fifty years for contaminated blood plasma, which they knew about . Ummmmmmm

Ritchie1268 profile image
Ritchie1268

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.

Lunario profile image
Lunario

When I read about such ignorance and stupidity, I get furious, whether it's about PA or Hashimoto's Syndrome.

I hope you will be in a position to ignore this bullshit and that you can change your doctor's office.

I wish you all the best!

Rexz profile image
Rexz

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

ncbi.nlm.nih.gov/pmc/articl...

Wishing you the very best! Rex

helvella profile image
helvella

Been thinking about this some more.

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.

Marz profile image
Marz in reply tohelvella

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.

helvella profile image
helvella in reply toMarz

This is about gastrectomy - full and (sometimes) partial:

nhs.uk/conditions/gastrecto...

This is expressly about bariatric surgery:

thebariatricgroup.co.uk/201...

There are at least scores more, possibly hundreds. I started searching for:

bariatric surgery b12 site:.nhs.uk

Marz profile image
Marz in reply tohelvella

Thank you. Am hoping this will help rather than my suggestions - sigh !

Nackapan profile image
Nackapan in reply tohelvella

Yrs whole letter wrong ag every level.

mcg-woo profile image
mcg-woo

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.

Nackapan profile image
Nackapan in reply tomcg-woo

Yrs I am not going to play thus dangerous game of who gets sick first taken off b12 I junctions

I will stay well full of b12 to fight this

Sleepybunny profile image
Sleepybunny

Hi,

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.

BMJ article on ethical approval from 2009

bmj.com/content/338/bmj.b450

helvella profile image
helvella in reply toSleepybunny

( GPs may argue that changing injections to oral tablets is not a major change in treatment)

In which case, it would not be a major change in treatment going from tablets to injections. Therefore, let it be available in ampoules for injection.

(Yes - of course that is a deliberate misinterpretation. :-) )

jade_s profile image
jade_s in reply tohelvella

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. $!@^%&@$#!

Sleepybunny profile image
Sleepybunny

"Excessive B12 can cause agitztion and anxiety"

Might be worth pointing out that lack of adequate treatment for B12 deficiency may lead to a deterioration in mental health.

b12deficiency.info/mental-h...

stichtingb12tekort.nl/engli...

b12-institute.nl/en/symptom...

Showgem profile image
Showgem

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 🥰

Sleepybunny profile image
Sleepybunny

"hence it is necessary that we check your current B12 levels"

PAS article "Testing B12 during treatment"

(has some useful quotes)

pernicious-anaemia-society....

Testing B12 during treatment (from Dutch b12 website)

stichtingb12tekort.nl/engli...

Sleepybunny profile image
Sleepybunny

Note on oral treatment - B12 Institute (Netherlands)

b12-institute.nl/caution-no...

B12 article from Mayo Clinic, US.

(Oral B12 treatment is mentioned)

The Many Faces of Cobalamin (Vitamin B12) Deficiency

ncbi.nlm.nih.gov/pmc/articl...

Pickle500 profile image
Pickle500

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.

Marz profile image
Marz in reply toPickle500

I had many a B12 injection done in Pharmacies in Greece bought OTC - 3 phials and 3 syringes for less than 5 euro. This was before I self treated !

EiCa profile image
EiCa

This is the first time I have read here that excessive B12 can do harm.

EiCa profile image
EiCa

Oh, I think I mis-interpreted this post. That was a quote from a doctor? (Excessive B12 can do harm)

jade_s profile image
jade_s in reply toEiCa

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.

So do not worry :)

Nackapan profile image
Nackapan in reply toEiCa

Yes!!!

EiCa profile image
EiCa

I am sorry this is happening to you Nackapan. It’s so atrocious and disheartening. You should not have the added burden of fighting like this.

Sleepybunny profile image
Sleepybunny

Hi,

Apologies if I've asked you before but have you considered going to the Press with your story?

EiCa profile image
EiCa in reply toSleepybunny

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.

newlandvale profile image
newlandvale

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.

Sleepybunny profile image
Sleepybunny in reply tonewlandvale

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.

PAS article about SACD

pernicious-anaemia-society....

SACD is mentioned in BSH Cobalamin and Folate guidelines and NICE CKS guidance on B12 deficiency and folate deficiency.

cks.nice.org.uk/topics/anae...

b-s-h.org.uk/guidelines/gui...

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