fuming: I am downgrading my doctor from... - Pernicious Anaemi...

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PlatypusProfit8077 profile image

I am downgrading my doctor from unicorn status.

I’ve had the most frustrating appointment to date where she has (un)helpfully told me that she doesn’t know how safe EOD injections for “such a long period of time” is and that she wants me to start exploring other avenues for treating my symptoms. When I asked what she meant by that, she said counselling.

So frustrating, when I’ve had crashes from both physical stressors AND emotional stressors. I could maybe understand the psych avenue if there were only emotional stressors impacting my symptoms. But the physical stressors are all things that, up until this year, I’ve been able to enjoy.

I should have offered to do a bloody mental health assessment there and then. Do I get stressed? Yes of course. Do symptoms coming back make me anxious? Yes of course. But I am still managing my life and not feeling completely overwhelmed by all of this (except when I have dumb appointments). Also, I have already engaged with a counsellor earlier this year and she ended up discharging me (with an invitation to come and chat if needed but didn’t feel like I needed more regular appointments). I told Dr F this and she was a bit startled.

And then the report from my scopes came back picture perfect (which is amazing news) but now she’s saying that obviously there’s nothing impeding your B12 absorption so I want you to trial oral to see if you can avoid injections.

I’m so glad I manage my own injections because I don’t feel like she would’ve given me a choice about it otherwise!

Can you have PA without damage to the stomach?? Is that a thing? Clear endoscopy/gastroscopy?

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oh and she also said that because I’ve done so many injections for such a long period of time (EOD since June), then I should be fine to keep those levels up with oral.

AND if I get symptoms returning on the oral tablets, I should just go back to injections “since you’ll probably do that anyway”.

She implied that only oral B12 gets excess peed out and that all of the injections get stored in the liver.

ClaireWF1346 profile image
ClaireWF1346 in reply toPlatypusProfit8077

Sorry to hear you are also experiencing this kind of poor care and understanding about the condition from your GP.

PlatypusProfit8077 profile image
PlatypusProfit8077 in reply toClaireWF1346

I think I need a good cry and then I’ll be back to fuming mad but ready to research and be my own advocate again.

I just thought she was in my corner, you know?

ClaireWF1346 profile image
ClaireWF1346 in reply toPlatypusProfit8077

I fully understand - my GP hasn't been 'in my corner' at all but when I paid to see a specialist I could have cried as he confirmed what I knew was wrong with me. Just to be listened to and know help was coming! In the UK it seems to be the norm to be dismissed in relation to B12 deficiency.

Around the time I saw the specialist I would be sitting at my work desk and suddenly be in tears, for no reason. The emotional impact of all this is not to be ignored but you know yourself better than anyone. You certainly don't want to be experimenting with oral B12 when you've come so far! Some of the 'facts' your GP stated are plain wrong. You know that you have an army of supporters on here 😊

PlatypusProfit8077 profile image
PlatypusProfit8077 in reply toClaireWF1346

Thank you! I told her “surely I’m not the only one that has needed more B12 than the ‘standard practice’!” But apparently I am the only one she’s come across 🙄

“All my other B12 patients come in every 3 months for their jab.”

So I tried Cherylclaire ’s line of “well how would you know if they were doing it at home on their own?” And she was a bit taken aback but still kept to her “let’s try oral” stance.

tuchwood profile image
tuchwood in reply toPlatypusProfit8077

More to the point. Are those patients thriving or just surviving. There is a big difference as many if not most of the people using this forum know.

PlatypusProfit8077 profile image
PlatypusProfit8077 in reply totuchwood

Yes that’s a fair point too. Are they still investigating or resigned themselves to a “mysterious illness” because the B12 is said to be sufficient

Nackapan profile image
Nackapan in reply toPlatypusProfit8077

I had that . Did an oral trial ( for the record) by my G.p at the time 2anted to see if I coujd cope on fewer b12 In jections .Not stop them.

Oral B12 did noting for me .

I really was disappointed as fewr injections would've been nice .

On my medical record if when / if they try and stop injections 💉

I'm also told.

"Oh you are the one that seems to want more than everyone else "

That's nurses though and receptionists.

I always reply

I need not want!!!

Cherylclaire profile image
CherylclaireForum Support in reply toPlatypusProfit8077

But you gave her food for thought - and she will return to that later, as a possibility not previously considered.

I was the only one given two injections a week for six months, I'm sure. The nurses seemed wary/suspicious/appalled - or, at best, concerned. My GP asked me if I wanted her to talk to them about treatment - but given they were doing the injections, I decided against GP intervention !

I think some doctors can see what is happening, but if it goes against what they have learned/ believe, difficult to justify in practice. The foreword to Martyn Hooper's book, from Dr Chris Steele (from This Morning, ITV) begins:

During my 45 years as a GP, I have often felt uneasy about the way in which pernicious anaemia is diagnosed and treated. This uneasiness has troubled me when initially investigating patients who complain of tiredness.

And continues:

.....I have felt a similar uneasiness when an affected patient has presented saying that he or she is still feeling tired despite receiving regular B12 injections, either self-administered or by way of the practice nurse.

My GP ended up being very supportive, having sent me to specialists to ensure there was nothing (else or other) missed. When I started self-injecting EOD, still trying to get a return to work, she continued to monitor all else except the B12; "Pointless."

Being singled out as different is fine, as long as that is an observation not a judgement. Pointing out that you might not be as different as they believe ? Worth considering.

Nackapan profile image
Nackapan in reply toPlatypusProfit8077

She couldnt think of anything else .Don't despair.

Put that consult behind you

wedgewood profile image
wedgewood in reply toPlatypusProfit8077

If you have PERNICIOUS ANAEMIA. , B 12 that is stored in the liver is no use to you at all . It enters the stomach just like food does and will need the intrinsic factor to be absorbed, which you won’t have .

PlatypusProfit8077 profile image
PlatypusProfit8077 in reply towedgewood

That’s the thing, I don’t have a diagnosis of PA - two IFAB tests came back negative. And now with the scopes coming back clear…?

Below you mentioned that you can’t have PA without stomach damage - so in order to have PA, my scopes should have come back with evidence of damage/gastritis?

None of the other B12 deficiency routes fit - not drugs, h.pylori, alcohol, weight loss surgery, PPIs. I don’t understand how I can have malabsorption otherwise.

Nackapan profile image
Nackapan in reply toPlatypusProfit8077

Noone really knows .My daughter had megobolastic anaemia and a b12 of 82 ( 180-200)

IFAB test negative !!

'Assumed ' PA

Her endoscopy clear too.

Your age .

Her body couldnt digest food properly at the time.

There is also the factor of once on injections it seems to override any process of old./ normal process.

Same with insulin .

Pancreas kicked in a few times after my husbands diagnosis of type 1 .

Messing up blood sugars causing collapses.

Eventually the pancreas that wasn't working properly stopped the intermittent workings.

Same witb the process of absorbing B12 .

I can't remember the science or when I read this .

Was on here .

Makes sense though if gets used to an overflowing amount of B12 to access it at cell level.

Unless dietary cause once on B12 injections always the need for them .

Perhaps another member can remember .

They simply do not have thr research or know all thd answers .

Should be on

'Clinical response '

If nothing else found to treat until the science / explanation catches up.

MuppDog profile image
MuppDog in reply towedgewood

I have had to mentally broaden my definition of PA to “any potential impediment to the absorption or conversion process both from known medical causes…and those that are still undiscovered”. I too am clear on all scopes and blood tests…but alas…here we all are. My hematologist didn’t know that stored B12 presents the same issues. At least we all have each other 😊

tomdickharry profile image
tomdickharry in reply toPlatypusProfit8077

Please refer her to the document 'The enterohepatic circulation of vitamin B12'. I don't have a link to it and the full text is quite long.

helvella profile image
helvella in reply totomdickharry

b12info.com/wp-content/uplo...

tomdickharry profile image
tomdickharry in reply tohelvella

Many thanks, this time I'll not lose it!

helvella profile image
helvella in reply totomdickharry

I've added a link to my third party pages on my blog. Just another place to forget when next you want to find it. :-)

helvella.blogspot.com/p/hel...

PlatypusProfit8077 profile image
PlatypusProfit8077 in reply totomdickharry

Thank you, I have given her quite a few journal articles (Wolffenbuttel) and PAS articles to read but it currently doesn’t feel as if she has read them

tomdickharry profile image
tomdickharry in reply toPlatypusProfit8077

Probably not. My doctor's "too busy" to read anything I've shown her.

wedgewood profile image
wedgewood

Well the NHS. organisation called N.I.C.E. ( National Institute for Health and Care Excellence) guide lines issued in March 2024, now refers to Pernicious Anaemia as “Autoimmune Gastritis . “ Gastritis definitely causes damage to the stomach . So no you can’t have Pernicious Anaemia without stomach damage . ( Antibodies attack the parietal cells in the stomach , which produce The Intrinsic Factor , needed for B12 absorption, and also stomach acid for the same purpose - for all other vitamins, minerals and trace elements .

But with correct treatment , that damage can be allayed i.e. sufficient injection's to keep symptoms at bay , measures to treat the stomach with great respect and care . . — Probiotics ( in food or tablet form ) , smaller meals taken more often . Chewing well . Using acidic drinks with meals , or taking Betaine HCl . where appropriate.

Here in U.K. if we cannot get sufficient injections to keep symptoms at bay , we are obliged to obtain B12 ampoules from German Online pharmacies . In Germany B12 ampoules are an over the counter item , freely available , unlike here in U.K. .

We all have to find our own salvation , as doctors do not . We are all different and will need different measures to insure our good health and well - being . Best of luck to you in Australia .

Sleepybunny profile image
Sleepybunny in reply towedgewood

PAS article on new NICE B12 deficiency guideline

The section that starts "Our primary concern...." mentions people can have a positive IFA test for PA without obvious gastritis.

pernicious-anaemia-society....

wedgewood profile image
wedgewood in reply toSleepybunny

But they are calling Pernicious Anaemia. “ Autoimmune Gastritis” ! I

So that must be a different condition. Or is that a quirk or a strange anomaly like people can have P.A. but still get a negative. test for IFA.? ( in about 50 % of tests ) I suppose it can happen the other way round . ….

Nackapan profile image
Nackapan in reply towedgewood

Confusng.My daughter had megobolastic anaemia. Very low folate ,ferritin and ironand vit D.

A B12 of 82( 180-200)

Awful reflux.

Slept sitting up.

An array of debilitating symptoms

All in the 'criteria' of diagnosing PA .

Her endoscopy was deemed 'clear'

Unable to digest food at the time.

Many MRI s abd other investigations

Her one and only IFAB test negative .

So it's not clear at all.

So confusing still as so much more understanding/ research is needed.

wedgewood profile image
wedgewood in reply toNackapan

Pernicious Anaemia / B12 deficiency is so under-researched . . That’s why it’s such a struggle for us . You put out such useful information Thank you .

LadyBothwell profile image
LadyBothwell in reply towedgewood

The Pernicious Anaemia Society website has a couple of blog posts about the name, my understanding is that NICE got it wrong because pernicious anaemia is the term they used to describe the actual anaemia in the blood ie megalobastic anaemia where the blood cells are large due to severe b12 deficiency and that deficiency if untreated would be fatal ie pernicious. technically if you are no longer anaemic then their argument is you no longer have a state of pernicious (megoloblastic) anaemia. The problem is that in the U.K. and other countries we also call the autoimmune condition which attacks intrinsic factor “pernicious anaemia” as the cause of the b12 deficiency . So how I look at it, is that you still have the autoimmune condition which causes the underlying problem absorbing b12 which is called PA but you, if treated, don’t have the end state of the deficiency causing the actual anaemia.

Well that’s how I understood it in a less brain foggy day!

PlatypusProfit8077 profile image
PlatypusProfit8077 in reply toSleepybunny

Thank you. I’m so tired of being on this merry-go-round.

Nackapan profile image
Nackapan in reply toPlatypusProfit8077

Yes it's very wearing. I like answers .

6 years on I have a solution but not answers.

Weekly B12 injections 💉

So far nothing else found to treat .

On no other meds .

No othef conditions to date to muddy the waters

So far keep my NHS prescription of 2 weekly B12 .

Based on response to them.

No idea of IFAB status as never had thd test .

Parietal cell antibody test negative before the start of b12 injections.

I too didn't fit any of the reasons like stomach operations

Alcoholism

Chrohns

Medications.

I hope you find solutions for you

LadyBothwell profile image
LadyBothwell in reply toPlatypusProfit8077

It’s more like a roller coaster!

PlatypusProfit8077 profile image
PlatypusProfit8077 in reply toLadyBothwell

Yes, one of those crazy loop-the-loop ones I loved as a kid!

SunnyWorld profile image
SunnyWorld in reply towedgewood

So I don't have Pernicious Anaemia now I have Autoimmune Gastritis? 😂😂🙄

It’s appalling to see pernicious anemia (PA) now being reclassified as simply autoimmune gastritis. PA is a serious, complex condition—not just a stomach problem. It’s as if a broken leg were being downplayed as a mere scratch, with the “treatment” being a band-aid. This reclassification feels like a cost-saving move that undermines the real impact PA has on patients’ lives.

Doctors understandably follow the guidelines they’re provided with, trusting that the experts have given them the best course of action. But with limited appointment time, often just five minutes, there’s little opportunity for us to be heard. When we try to express our need for more B12, it can come across as hypochondriacal, as though our symptoms are “all in our head.” The truth is, we need our voices acknowledged and our condition properly understood—PA deserves the recognition and treatment that reflect its true nature.

wedgewood profile image
wedgewood in reply toSunnyWorld

I doubt. that doctors will know that NICE has “rechristened”Pernicious Anaemia to Autoimmune Gastritis , because most of them don’t read the guidelines . …

NOTI1 profile image
NOTI1 in reply towedgewood

'So no you can’t have Pernicious Anaemia without stomach damage'

A quick question - I have just had an endoscopy and biopsy; results all completely clear; no damage, no gastritis.

I had positive intrinsic factor result 7 years ago so diagnosed with PA and so with no damage what does that mean?

Nackapan profile image
Nackapan in reply toNOTI1

Maybe before damage occurred.?Endoscopy not refined enough ?

Who knows?

We can only go by if B12 works as it does indeed for my Mum

And good history taking

My daughter

And I!!

Mum and my daughter had many many investigations on stomach, bowel ,spine.

Different specialist apps.

Left with different damage.

Root cause B12 deficiency

I had the neurology route as my problems very different.

So brain Mri,s ect

Noone .

knows enough to explain it all.

A clear cut explanation let alone diagnosis would be good.

NOTI1 profile image
NOTI1 in reply toNackapan

I have just found and posted this:gpnotebook.com/en-GB/pages/...

It helps to explain the difference.

NOTI1 profile image
NOTI1 in reply toNackapan

I also had the mri, misdiagnosis, even by neurologists and gp's route and now confirmed no gastritis.

NOTI1 profile image
NOTI1 in reply towedgewood

'So no you can’t have Pernicious Anaemia without stomach damage'A quick question - I have just had an endoscopy and biopsy; results all completely clear; no damage, no gastritis.

I had positive intrinsic factor result 7 years ago so diagnosed with PA and so with no damage what does that mean?

wedgewood profile image
wedgewood in reply toNOTI1

I was going on the NICE guidelines which now call Pernicious Anaemia “ Autoimmune Gastritis “

NOTI1 profile image
NOTI1 in reply towedgewood

I have read these too and given them to my gp, but am now a little worried if not having gastritis overrides a positive intrinsic factor result.

wedgewood profile image
wedgewood in reply toNOTI1

I suppose it is another condition , with a different name , and is not called Pernicious Anaemia .

NOTI1 profile image
NOTI1 in reply towedgewood

And so does this mean that a diagnosis of PA without damage to the stomach is incorrect; I am quite confused by this?

wedgewood profile image
wedgewood in reply toNOTI1

I can’t answer that . I wonder if a doctor could .

NOTI1 profile image
NOTI1 in reply towedgewood

I would not want to risk asking my gp as I am only just only an appropriate injection regime after 7 years.

NOTI1 profile image
NOTI1 in reply towedgewood

I have just found this which helps to explain the difference; it also shows why some of us with PA do not have anaemia at diagnosis:gpnotebook.com/en-GB/pages/...

helvella profile image
helvella

It might be of no direct relevance, but autoimmune gastritis is not the only cause of low/non-existent intrinsic factor. The original poster has asked Can you have PA without damage to the stomach? - this is my attempt to provide some fragments of an answer.

Imerslund–Gräsbeck syndrome

en.wikipedia.org/wiki/Imers...

or

Hereditary intrinsic factor deficiency in China caused by a novel mutation in the intrinsic factor gene-a case report.

europepmc.org/article/MED/3...

Why on earth the focus shifted from the inappropriate term Pernicious Anaemia to Autoimmune Gastritis, I cannot fathom. Surely the key issue is inability to absorb B12 - probably due to inadequate intrinsic factor - however it comes about?

PlatypusProfit8077 profile image
PlatypusProfit8077 in reply tohelvella

Thanks helvella!

I think I’ve been more startled/thrown by the shift in support from the GP. Previously she had been so helpful. And I thought she was reading the scientific journal articles I’d given her (she said she would!) but given what she said yesterday, it certainly didn’t sound as if she’d read The Many Faces of Cobalamin Deficiency!

I’ve only heard very briefly about Imerslund-Gräsbeck syndrome. I suppose genetic testing could be a way forward, despite the solution/treatment remaining the same 🤔 I think the main reason I’m determined/hopeful for a diagnosis is for future support and medical assistance. Without a diagnosis, what happens if I’m in an accident and in hospital for a length of time or when I’m unable to care for myself at an older age?

helvella profile image
helvella in reply toPlatypusProfit8077

I more than understand - and I don't (so far as I know) have a real B12 issue.

Nackapan profile image
Nackapan in reply toPlatypusProfit8077

I stuck to one G.p after going through 6 at the surgery .She too got exasperated and had alot of peer pressure fit not following 'guidelines ' but following me.

She hit alot of brick walls.

I had alof of tricky consults.

Statements lije she coyjdnt hrlk me if I refused drugs ( antidepressants)

Oral b12 trials ( to reduce injections it replace ) agreed .

She also said .

"You will get yourself better "

So good and bad .

Try not to be tok disappointed by one bad one .

Move on.

They were mostly face to face .

Over a period of about 3 years.

I stuck with her though as others were awful.

Most convinced I was a menopausal neurotic women.

Totally dismissing how ill I was .

Bloods apart from very low b12 showed nothing.

So once b12 repeat j must be mentally ill.

They just didn't have the knowledge.

The chosen one despite difficulties was trying.

Most G.ps want their backs covered if prescribing is 'off licence '

Done all of the time.

However not accepted / done with B12 by many doctors .

Even when a consultant has requested a more aggressive b12 regime.

It's not 'common ' practice.

Madness but heavy drugs covered by all the research and vigorous testing .

Obviously needs change

Nackapan profile image
Nackapan

I'm sorry your doctor took thus view . Counselling as well as B12 .

Not remove B12 !!! Maybe.

I was once told yoga or perhaos a zjmba class woujd lower my anxiety .

I was dumbfounded ( rare) I coukd hardly walk. Fatigue so bad i could barely digesting nausea and reflux bad.

Moved on to next G.p.

As that one clearly had not listened .

Exploring other avenues good .

Need to be realistic though

PlatypusProfit8077 profile image
PlatypusProfit8077 in reply toNackapan

Thanks Nackapan - your kind words and wisdom always help!

Tanitha profile image
Tanitha

Your vitamin d is very low and that in itself has the potential to make you feel most unwell.

DiSews profile image
DiSews

Oh! I am crying with you! What a savage disappointment 😞 When you have had your cry, try to remember that you are not alone - evidence of which is right here on this forum xo

Well done for entering into the discussion and asking tough questions of her! Maybe she will get unsettled and curious, and start questioning what she understands ( or doesn't understand as the case may be).

My gastroenterologist has requested cardiac, respiratory and neurologist referrals for me for the same reason- because my stomach showed no sign of PA. I'm going with it in case there is something else going on as well, but I fully expect the psych referral to be imminent.

Someone on this forum suggested that the stomach needs B12 to repair the damage so of course if you are bypassing the malabsoption then your stomach will repair and hence appear healthier. I am going with that, but at the end of the day, you know you have a deficiency and how to treat it so keep going. Thrive, don't just survive!

I do understand your concerns about when you may have to rely on others to administer the jabs. We need our NOKs to be well informed to intervene on our behalves if it comes to that.

Stay strong and focus on being well for yourself and your loved ones 🫂

PlatypusProfit8077 profile image
PlatypusProfit8077 in reply toDiSews

Thank you! I really appreciate your kind words and support. Definitely want to thrive and not just survive

I also accepted all the other tests and referrals because of course let’s check and rule other things out! The neurologist even put in a blood test for syphillis because of its propensity to cause lesions in the brain. I emailed him and requested he give me a heads up about test requests like that because when I saw the code on the form I nearly choked.

Wwwdot profile image
Wwwdot

Hi PlatypusProfit

I fully understand how you must feel. Please cry it out and then get up and carry on fighting. You must and we must all do that. We are all with you.

I had a gastroscopy yesterday and apart from finding a hiatus hernia (I never knew I had!) and their disbelief that I have never suffered heartburn - apart from in late pregnancy - my stomach looked “normal” but the biopsy results will take up to 4 weeks.

I am braced for a battle as PPIs were mooted to deal with the hiatus hernia and yet I told them I can only eat without getting severe IBS symptoms if I take Betaine and Pepsin with a meal to artificially raise my stomach acid level.

So whilst I was told no visual signs of stomach cancer which has been my worry for the last couple of years, I do wonder whether the results will be a double edged sword?

What is normal anyway? All I know as a fact is that to have a functional enjoyable life I like you and many others on here need B12 far far more frequently than the medics seem to think we “should”.

You did exceptionally well in your replies to your GP - I have banked some should I need them too - well done and lots of hugs.

🤗🤗🤗

PlatypusProfit8077 profile image
PlatypusProfit8077 in reply toWwwdot

Thanks Wwwdot - health is so fragile isn’t it? I’ve taken it for granted all these years!

I hope your treatment for the hiatus hernia is helpful and not harmful to what else you’ve got going on. A delicate balancing job!

Thank you for your lovely encouragement! (I need a quote book to take into appointments. I often jot notes on my phone but panic at confrontation and think of all wonderful things to say afterwards!)

Wwwdot profile image
Wwwdot in reply toPlatypusProfit8077

Hi PP

Yes I think I need a notebook too as I often find my tongue deserts me when I need it most!

I am not planning to accept any”treatment” for the hiatus hernia because I have no symptoms of it at all so it can just remain - my view is that it has never bothered me so clearly does not need to be “fixed”! It could have been there from birth as I have always had low stomach acid I suspect looking back at what I could and can still eat without any high stomach acid symptoms.

Health is indeed fragile and I did take it for granted but I now know it was a case of ignorance is bliss. But now I know what’s wrong and at least I can live my best life as a result.

Great post and glad you are bouncing back after that below the belt blow!

🤗🤗🤗

PlatypusProfit8077 profile image
PlatypusProfit8077 in reply toWwwdot

Can I ask what your signs of low stomach acid are?

Wwwdot profile image
Wwwdot in reply toPlatypusProfit8077

Hi PP

I have always been able to eat lots of acidic food like fruit juices, fruit puddings and once older cider (!) with no heartburn at all u like the rest of my family. but I have always found it hard to eat protein without getting stomach discomfort. Vegetables were always easiest for me to eat.

I also rarely felt hungry and. Ohms not over eat - apparently stomach acid stimulates you feeling hunger from your gut. I always had hunger symptoms as lightheaded feeling due to low blood sugar. So I have always eaten daily because I had to but even as a young child I struggled to eat breakfast or lunch - now I am older I know why and I still generally only eat one meal a day.

🤗🤗🤗

PlatypusProfit8077 profile image
PlatypusProfit8077 in reply toWwwdot

Oh wow….I've never gotten heartburn, even with acidic foods. Do you burp? I think I can count on one hand the amount of times that I’ve burped in the last two years (it’s been a thing since at least adolescence and I’ve suffered with iron deficient anaemia since then too).

Wwwdot profile image
Wwwdot in reply toPlatypusProfit8077

Hi PP

Rarely have I burped!

I havent had iron deficiency as such but my serum ferritin is hard to change it’s around 90 ng/l (think that’s the unit) regardless of what I eat or supplement.

I did a home test for low stomach acid -taking 1/2 tsp bicarb in some water first thing in the morning on an empty stomach- apparently with reasonable levels of stomach acid you should burp in 2-4 minutes - it took 14 minutes before I burped.

🤗🤗

waveylines profile image
waveylines

I really feel for you. I tested negative for Intrinsic Factor twice. Not had a scope test. My b12 levels dropped to bottom of the range. I had lots of neurological symptoms which had me shaking head to toe, could varely walk.......my b12 jabs are daily self administered and my neurological symptoms are now mild after 4yrs. My new GP surgery stopped my b12 jabs claiming insufficient clinical evidence.....not sure what they meant. My nhs neurologist got them reinstated.B12 uptake and recycling is a complex system and the mechanism to diagnose what's gone wrong where in that system is limited. It involves far more than thr starting point of absorption from the tummy. PA is one consequence but not the only cause of b12d ......this seems to be something your GP is oblivious of. I thought the new guidelines mentions this and doesn't just focus on PA. Have I misunderstood.

Even so both ny thyoid neds for hypothyroidism and my b12 injections were stopped....by a new GP Practise. B12 jabs I got back.....thyroid meds an on going battle. .....so moved again.

I have very little faith in the nhs anymore and feel it's increasingly designed to make me ill rather than well.....but that's just me.

You are not alone. Keep fighting. Is there another GP who might be supportive??? Or was she the only one?

PlatypusProfit8077 profile image
PlatypusProfit8077 in reply towaveylines

You definitely haven’t misunderstood - we should all have MD after our names with the amount of research performed in here!

I’ve had brief run ins with other doctors at this surgery and she’s one of the better ones. I’ll keep my ears open but she’s been treating me since the start of my messy year and it would probably be more frustrating to start fresh and have to explain all the tests/symptoms to a new doc rather than have them witness it. I was a mess and she’s seen the results of the intensive B12 I advocated for so this just felt like a real left of field appointment/discussion!

Wwwdot profile image
Wwwdot in reply towaveylines

Oh Wavylines

I feel for you. Two battles to fight - you humble me with your incredible resilience.

🤗🤗🤗

waveylines profile image
waveylines in reply toWwwdot

Thankyou wwwdot. 😍 Must admit after 8months of no thyroid meds I feel broken & emotionally I'm like a roller coaster.....all over the shop! Anyway new GP surgery app to.orrow....they seem really nice. fingers crossed. 🤞🤞🤞🤞 Could do with a change in luck!!

Wwwdot profile image
Wwwdot in reply towaveylines

Hi WL

We went through similar with my hubby - he was struggling but NHS GP was totally disinterested so we had to go private and within 3 months I had sight of my hubby again. It’s shocking that both me and my hubby find ourselves needing health care that the NHS refuses to give us. C’est la Vie!

I sincerely hope that you find support as there are gems out there - we just have to kiss a lot of frogs to find them !

🐸 🐸🐸

Lilian15 profile image
Lilian15

Here in the UK their main goal is to try and eliminate all injections. Those who have gastritis PA they cannot get away with stopping their injections, but everyone else they manipulate and gaslight into taking tablets. They stopped my injections and the only way they could do that was to say I did not have PA after all and original diagnosis must have been wrong. I do not seem to have stomach problems. 3 years later all symptoms back again. I requested a test the result of which they had to admit, was that I DO have PA. However it seems nowadays 12 weekly has turned into 3 monthly (yes there is a difference), I think that is the fault of the new guidelines, but then if the whole idea is to try and eliminate giving injections the guidelines would have to match as far as they dare. A full blood count does not include B12 as a matter of routine.

PlatypusProfit8077 profile image
PlatypusProfit8077 in reply toLilian15

Yeah it’s very messy. Our public health system in Australia is chaotic but functioning a bit better than the NHS I think.

Some days when you wish for something a bit more straightforward and understood, right?

Orchard33 profile image
Orchard33

What a shocker!!

PlatypusProfit8077 profile image
PlatypusProfit8077 in reply toOrchard33

Right? I’ve been horrified hearing of all you UK folk being pushed to oral and I didn’t expect it to happen here too.

Dandelions profile image
Dandelions

That's awful.

It must have caught you off guard with a GP you felt listened to and cared for. That's extra painful! And will add to your feeling of 'I'm not safe/cared for anywhere.' I know I have these thoughts of what will happen when I need to go into hospital or when I'm old and need care.

Good on you , you were able to see a therapist. You know it's not in 'your head', you're not crazy. Sounds like you handled that appointment with your GP really well. Have some cake and be proud of yourself.

PlatypusProfit8077 profile image
PlatypusProfit8077 in reply toDandelions

Yes I think you’ve nailed it. I wasn’t on my guard with her and wasn’t expecting things to go sour so it hit hard!

I’ve had a chat with hubby and some close friends who are in the know (as well as everyone here!) and feeling much more even-keeled today.

Thank you for your kindness

Ghound profile image
Ghound

I'm so sorry to bear what you've been going through !

I tell people I have pernicious anaemia because it's easier than trying to explain that I have all the symptoms of it, yet my blood levels of B12 are normal.

I have no gastric symptoms at all but I was very ill with symptoms of anaemia and neurological problems.

As all my signs and symptoms resolved with B12 injections, it would seem that I absorb B12 into my bloodstream, but it doesn't reach my cells.

I would never mention that to my GP as I had a difficult enough time getting a diagnosis !

Wishing you all the best xx

PlatypusProfit8077 profile image
PlatypusProfit8077 in reply toGhound

Ah I’ve said the same thing to curious friends, or that it’s a disease similar to MS but due to the deficiency. It’s made quite a few of them go and get their levels checked!

Thank you for your kind words!

PlatypusProfit8077 profile image
PlatypusProfit8077

You guys are all amazing, thank you! I’ve had my cry, had some brownie (love having teenage daughters who love baking!) and now I’m back in the good mindset again.

I’ll keep researching, reading, taking my B12 and finding my normal again.

EllaNore profile image
EllaNore

I am sooo sorry. That is ludacris. Keep up your self care. It's very disheartening when we think we finally found a doc and they let us down. Sending empathetic hugs. Hang in there. Your know what's what. I don't know about the damage to the stomach and if you can have PA without damage. But if the way you've been treating yourself is working, just continue doing what you're doing.🫂🫂🫂

waveylines profile image
waveylines in reply toEllaNore

In the New UK guidelines it acknowledges that PA is a small percentage of b12d and that if b12 supplements don't work it should move to b12 injections. That the frequency should be increased until the levels is found that diminishes symptoms. This just needs to translate to doctors out there! Lol....

PlatypusProfit8077 profile image
PlatypusProfit8077 in reply toEllaNore

Thank you!

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