constant battles for B12: this article... - Pernicious Anaemi...

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constant battles for B12

LadyBothwell profile image
82 Replies

this article popped up on my phone while I was waiting in the Doctors surgery this morning for my B12 injection,

hellomagazine.com/travel/20...

I probably shouldn't have read it because i was annoyed by it!

after yet more patronising and condescending comments from the nurse and a lecture about why I shouldn't make an appointment two days early for my injection because she might "lose her job" I asked her if it was ok then for me to be verbally abused by her, be under treated to the point where I'm falling over and shaking and that I might lose my job, friends, social life, sanity just because I have pernicious anaemia and need my B12 injection regularly in order to even function.

she told me I was being difficult and that they couldn't just give out "drugs" all the time! Actually I think she said "give out drugs willy nilly" but at this point Id stopped listening to her. I pointed out it was a vitamin and she said it is still a drug. So Ive had a little cry and eaten some chocolate and posted here for some peer group sympathy 😀.

edited to add. Thank you to everyone who replied. I felt so down this morning with the latest battle but you all cheered me up and I felt supported. Weirdly, I have a mental picture of many of you based on your user names which I’ve become familiar with over the years which in itself is a comfort when I read your posts and updates,

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LadyBothwell profile image
LadyBothwell
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82 Replies
wedgewood profile image
wedgewood

Well it’s just that sort of article that prompts some doctors to think that we who need our B12 shots for genuine medical reasons ,are trying to emulate the likes of Simon Cowell and Victoria Beckham .

I’m sorry that the nurse was so rude and dismissive. That’s really shocking . Have you ever thought about self-injecting ? I felt that I had to after a three-monthly injection was very insufficient , but my GP would not relent , and was hinting that I was a hypochondriac. ( I had a positive Intrinsic Factor Antibody test so definitely had P.A.)

Self -injecting was the best thing I ever did . Give it some thought ,and come back to us f you would like all the information l Best wishes .

LadyBothwell profile image
LadyBothwell in reply to wedgewood

thanks Wedgewood, I self inject in between my prescribed 8 weekly injections, my haematologist knows and says I can inject what I want and when (B12 obviously lol) but my GP doesn't know and is very very negative and tells me I can have tablets in between even though I have a confirmed PA diagnosis. Your advice on here in particular helped me buy and SI a few years back. I'm currently getting B12 IM every 4 weeks with my own SI and the GPs. This was working well until recently but perhaps I should SI more for a while and see if I get back on track. My Haematologist wants a neurologist to check out some new symptoms I reported to him at my last check up (as I have iron deficiency as well) so I was going to wait for that first.

Yahaci profile image
Yahaci in reply to LadyBothwell

If you SI why did you go to the GP for an injection?

LadyBothwell profile image
LadyBothwell in reply to Yahaci

because I think it important that it is on my medical records and that the nhs and gp do their job and treat me for pernicious anaemia When eventually the guidelines change and we get proper treatment I want it recorded that they didn’t treat me properly before. And at the risk of sounding petty, we have a national health service - I’m entitled to treatment!

Yahaci profile image
Yahaci in reply to LadyBothwell

Have you told them you SI? I can understand where you're coming from. I was much the same, however, this past week has revealed to me the futility of battling the much cherished national horror service, or the medical cabal.

But power to you.. send the complaint and sue if necessary.

JaneChapple profile image
JaneChapple in reply to LadyBothwell

Sorry to hear this. Ive seen many thyroid patients on tje vsrious sites being diagnosed with FND (Functional Neurological Disorder) they visit a Neurologist. It seems they would rather use this label instead of giving them optimal meds whether it be levo, T3 or even B12. Because of this their waiting lists to see patients thst actually do need to see a Neurologist are very long, so you will probably not be seen very soon.

All they need to ro is treat you for your iron deficiency and give you enough B12 injections. Has the Haematologist not written to your dr re the iron.). As he is ok with you self injecting he could put that in writing also?

BW

Janexxx😒🤓❤

Yahaci profile image
Yahaci

I'm so sorry for your not uncommon experience with the National Horror Service.

This is typical of their behaviour, in fact typical from a range of ''public'' services. It makes my blood boil. She should count herself lucky to have a job, at which she no doubt ''works so hard'' . The NHS mantra.

It's gotten worse, now the GP's have had a pay hike for doing nothing. They forget the NHS was supposed to be for patient care, not just their unwarranted salaries.

Do write a ''formal complaint'' that way its on her record. Ask them to specify how you were being ''difficult'', and since when has b12 become a drug? Or is that only known by those with superior intellect. Ask them if she knows what ''pernious'' means. It's deadly!

The only next logical step for individuals is to seek legal advice and compel the ccg's or whatever they're now called to ensure to give injections according to YOUR need not their arbitrary schedule.

Pickle500 profile image
Pickle500

It beggars belief when they say 'we can't just give out drugs willy nilly' when, in fact, that's exactly what they do 😂. You will easily be prescribed anti-depressants (drugs), PPIs' (drugs), or beta blockers (drugs) without much thought or care.

But B12 is NOT A DRUG. It is a vitamin which is essential to the body.

These Doctors are smart people. They're not silly, they know what they're doing and saying. The catchphrase today, I understand, is 'Gaslighting'.

I suspect the reason they are being quite off with you is that more injections results in more burden on NHS nurses and resources. It is not the B12, it's the time and administration to give it to you.

More and more of us should try to get behind the urgent need for Over the Counter B12 in pharmacies. The pharmacists could show us how to inject and be culpable for any misuse. This relieves the NHS Doctors and allows B12 to be monetized. Sure, it may be more expensive than in Germany as a result, but I would gladly pay whatever is needed to get the B12 needed and inject as needed.

I heard that (dark) chocolate is FULL of magnesium and zinc, both beneficial vitamins for PA sufferers. So don't hold back!

We're here for you 😀

Technoid profile image
Technoid in reply to Pickle500

Dangerous stuff that dark chocolate!!!! clearly a drug! 😆

LadyBothwell profile image
LadyBothwell in reply to Technoid

thank you for making me laugh, I love dark chocolate and that's exactly what I ate when I got back from the surgery. Addict!

Nackapan profile image
Nackapan in reply to LadyBothwell

Yes we all need a laugh.

Im deemed 'difficult too'

Perhaps its a new word for ill?

Sounds like a trial of a higher frequency worth s try when youbare ready.

Write a letter requesting a higher frequency from your gp .

Ive written do many letters .

They are scamned on notes

Can give positive results .

Just dont expect a reply..

Short and to the point

Wd really do not need this 😒 this treatmeny.

Try and rise above it.

EiCa profile image
EiCa in reply to Technoid

I am literally savoring a tiny piece of dark chocolate as I read this. I am definitely an addict. I “dose” myself tiny nibbles through the day. Attempts to go cold turkey have been futile but I do worry it may be aggravating something. Seriously though I eat less than .5 oz/day. I eat very dark chocolate so no sugar (and I actually need calories. Sure wish it had B vitamins in it!

LadyBothwell, I think going to the surgery IS important so it is on record that you are supplementing and need it, especially since you haven’t disclosed that you SI..

Sorry you were treated so shabbily. Here in the US, we have a dire shortage of medical personnel. I imagine it is the same there. They feel over-worked and underpaid. Doesn’t justify their behavior! I was a kindergarten teacher. They should try teaching 28 five year olds at once…giving injections would be a walk in the park for me. There were countless times I couldn’t even use the restroom as I got no break and had no one to watch the kids. I imagine I used up my B12 early on in my career from stress.

in reply to Pickle500

If it wasn't for doctors giving out pharmaceutical drugs that deplete B12 ( some anti depressants, HRT PPI and diclofenac the pill the list goes on). Its the drugs that cause alot of harm not the B12.

Pickle500 profile image
Pickle500 in reply to

Exactly! It's a shame none of them are taught this in medical school.

Marz profile image
Marz in reply to Pickle500

Medical Schools funded by Big Pharma I believe - so there's a pill for everything without nutrient studies 😢

Ritchie1268 profile image
Ritchie1268 in reply to Marz

You're 100% correct Marz!

Pre lockdown I was invited to speak on a webinar for the Westmister forum.

Speaking before me was the former drug policy advisor for President Barack Obama. When he was asked how we stop the Opioid epidemic in the US becoming as big of a problem here in the UK his reply was: "Simple, stop medical schools being funded by Big Pharma" Speaks volumes!

Marz profile image
Marz in reply to Ritchie1268

Also incentivising the prescribing of certain pills and potions is not helpful. Thanks for sharing your experience 🌻

Yahaci profile image
Yahaci in reply to

My nightmare began because of Metformin. The manifold symptoms of b12 deficiency are life destroying. That's why i asked how undiagnosed people lived before treatment. I only existed.

lolajone profile image
lolajone in reply to

HRT? Does it deplete B12? Didn’t know that

in reply to lolajone

I am afraid so !

Sleepybunny profile image
Sleepybunny in reply to Pickle500

Link to recent thread on forum about a petition to stop "gaslighting" of patients with auto immune conditions and b12 deficiency.

healthunlocked.com/pasoc/po...

Litatamon profile image
Litatamon in reply to Pickle500

"It beggars belief when they say 'we can't just give out drugs willy nilly' when, in fact, that's exactly what they do 😂. "

So flippin' funny. The best.

EllaNore profile image
EllaNore in reply to Litatamon

Right!!!!! Here, take this opioid! Take this antidepressant!!

cheriton22 profile image
cheriton22 in reply to Pickle500

I totally agree

Technoid profile image
Technoid

It's tragic that I can go to a beauty or "wellness" clinic, pay 25-30 euro and get a B12 shot no questions asked but the medical profession kicks and screams about it or tries to convince people to reduce their frequency or dosage due to the terrifying effects of this "drug". It's absolutely criminal.

EllaNore profile image
EllaNore in reply to Technoid

Exactly!

EllaNore profile image
EllaNore in reply to Technoid

What kind of license does a beautician need to buy unlimited B12 for their clients? And from where? Maybe i will file for the same license and buy unlimited b12 legally like they do.

EllaNore profile image
EllaNore in reply to Technoid

This is a very interesting blog. About how beauticians can administer B12.

MHRA Double standards on vitamin B12 injections

by Tracey Witty | Dec 31, 2020 | Petition

b12deficiency.info/mhra-dou...

Sleepybunny profile image
Sleepybunny

Hi,

I'm sorry to read about the nurse's unkind behaviour.

Dealing with B12 deficiency is bad enough but dealing with rudeness on top of it is too much.

A few links you may find helpful if you choose to complain formally or informally.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

NHS Complaints

patients-association.org.uk...

Care Opinion website

careopinion.org.uk/

NICE guidelines - Patients' experience of healthcare (has some useful quotes)

Adults

nice.org.uk/guidance/cg138

Look on ICB or Health Board website at their values/mission statements as should be something about how patients should be dealt with.

List ICBs in England

nhs.uk/nhs-services/find-yo...

NHS Complaints Advocacy

voiceability.org/about-advo...

pohwer.net/nhs-complaints-a...

advocacyproject.org.uk/what...

There are other advocacy groups in UK besides these.

Search online for "NHS Complaints Advocacy".

Parliamentary and Health Service Ombudsman - England

ombudsman.org.uk/

There are ombudsmen in Wales/Scotland/NI

MPs

It's possible that your local MP or devolved representative may be able to help in some way.

MP's website should have details of advice surgeries and an online contact form/tel number.

Going to the Press/other media

Have you considered going to the Press eg local newspaper etc?

It's likely to affect GP/patient relationship but can be effective.

Newspaper article about patient struggling to get B12 treatment in Scotland

eveningtelegraph.co.uk/fp/i...

And a positive follow up story

eveningtelegraph.co.uk/fp/b...

Have you talked to PAS? They might be able to pass on useful info.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring. PAS membership is separate to membership of this forum.

Some forum members have been supported by the person who runs B12 Deficiency Info website.

b12deficiency.info/

I may add more to this post so check back later.

Sleepybunny profile image
Sleepybunny in reply to Sleepybunny

Link to a thread about patient safety I started recently, discusses appointment of a Patient Safety Commissioner.

healthunlocked.com/pasoc/po...

I feel that constantly having to battle GP surgeries for adequate treatment is risking our safety.

Hopefully should be more useful links in above thread.

LadyBothwell profile image
LadyBothwell in reply to Sleepybunny

thank you Sleepybunny for your constant stream of useful information and links. I’m a member of PAS and have written countless letters to my surgery explaining where they are incorrect about tablets, toxicity, treatment frequency etc etc, I’ve even given them a copy of Martin Hoopers book. This is probably why I’m considered “difficult “. I won’t give up though. Actually I’ve had some success with GPS over the years who at least (some of them) will listen or take note of links to papers and guidelines, It’s the nurses attitude I have constant trouble with. I’ve asked in writing to self inject to save them money and time. Im trained to inject animals so thought after 20 years of having PA and being a responsible professional person they’d say yes but they had a practice meeting and wrote back and said no that it was not allowed in any circumstances even though I know other surgeries do allow it with training and occasional supervision.

Sleepybunny profile image
Sleepybunny in reply to LadyBothwell

If you have time, try to do a bit of digging about B12 treatment during Covid in your area.

ICBs (Integrated Care Boards) have replaced CCGs in July this year so if you can't find info on your ICB website, try to find CCG info.

Some CCGs/Health boards allowed self injection during the height of pandemic.

If your area did, you could point this out and argue that you should be allowed to now.

EllaNore profile image
EllaNore in reply to LadyBothwell

Good job giving them Martyns book. Keep up the fight. I love what you told that nurse too. I will never shut my mouth about this. Even if I lose every doctor I have. And I'm close to that.

Cherylclaire profile image
CherylclaireForum Support in reply to EllaNore

Our local surgery has lost two of its best and most experienced GPs recently - both of whom now seem to be working at hospitals in rapid diagnostics. Something they are both very good at.

I wonder, since there is no mention of either of them having left on the surgery website, whether this is part of a redeployment scheme to clear backlogs (?)

- So you can end up losing your doctor anyway !

EllaNore profile image
EllaNore in reply to Cherylclaire

Gosh, I don't know. I never even thought about that. What i thought was that they didn't want the liability of me self injecting. There was suddenly a lot of movement in my online records. I can see everything and i get notices when there are updates. So I asked if anything was wrong and they said just ignore it, they were just updating all my latest tests. I felt as though they were dotting their i's and crossing T's. Soon after, they said they took me as far as they can and they wanted to send me to a specialist. I took that as they couldn't help me anymore. That went no where. The specialist was not helpful. I'm still looking on my own for a new doc. As we all know, I'm not sure one exists. I can't afford the Mayo Clinic. So I'm stuck with our version of your NHS. Very limited.

Cherylclaire profile image
CherylclaireForum Support in reply to EllaNore

Mine was very helpful - but now gone I think.

EllaNore profile image
EllaNore in reply to Cherylclaire

I liked mine too. He found my PA. But he doesn't want to learn about b12 and is choosing not to be my doctor. He's admitted he just doesn't know about it. But why not just learn with me? I can't see how a doctor wouldn't want to educate themselves. He's in a town of less than 1300 people. So it's not like he's in some big city metropolis with no time to learn. His clients are mostly older and in care homes here in town. They probably have PA. He could help so many, but he's choosing to pass his problem (me) onto someone else. That means being scrutinized again and I'm just not up to it anymore. I can treat myself.

EllaNore profile image
EllaNore in reply to Cherylclaire

I just tried to log into my health records and they have been deactivated. I think I've been kicked out of my health care provider. Not just my GP. The entire network. They have all my records.

Cherylclaire profile image
CherylclaireForum Support in reply to EllaNore

EllaNore - please can you repeat this, but start it as a separate post ?

The reason being that no-one will notice it down here at the tail-end of Lady Bothwell's post, and I'm sure that those in the know will be able to help you. This is too important an issue to go unnoticed and unanswered.

EllaNore profile image
EllaNore in reply to Cherylclaire

Cherylclaire, They reactivated my account this morning. They don't know why it got deactivated. So at least I have my records. And I'm still in the system. Sorry i jumped to conclusions but things have been strange with my records lately. All is well. Thank you.

Cherylclaire profile image
CherylclaireForum Support in reply to EllaNore

Very stressful for you, EllaNore - don't apologise. Glad you are still in the system.

Sorry the system has let you down.

Sleepybunny profile image
Sleepybunny in reply to EllaNore

Shocking, so sorry to read that EllaNore.

Cherylclaire profile image
CherylclaireForum Support

Sorry to hear that the nurse upset you today.

I just want to be me again, not Simon Cowell or Victoria Beckham or Madonna. Really not. But all this ridiculous "celebrity" emulation is certainly having a detrimental effect on our health.

Honestly, the amount of suspicion and panic surrounding B12 injections we have to face from medical professionals ! (don't you wish nurses would stop reading gossip magazines and start reading some research papers ?)

I had the cause of my B12 deficiency diagnosed as functional B12 deficiency, because I was unresponsive to their injections, worsening on their maintenance dose, and had continually raised MMA This meant that my GP requested 3 injections a week. One nurse, the one in charge, looked at me with that sharp headmistressy glare, and said, and I quote " Did you ask the doctor for this frequency - or did this come from a specialist ? "

I would have laughed if I'd had the energy. Can you imagine having that much sway with a GP that you could suggest your own B12 frequency ?

Since the nurses were too busy to fit all my injections into their schedule, I got two injections a week. Not complaining. It continued at that frequency for six whole months because finally, I was improving: friends, family and even the GP noticed .... that nurse must have been absolutely livid !

Well, I now self inject at that frequency - which, by and large, still works for me. The symptoms are controlled by this, not gone. Happy to be in charge of my own health and not bothered that my NHS injections were eventually stopped by a new GP. Three years later, my MMA dropped into range - so I must've been doing something right !

I was offered (and refused) antidepressants three times before it was discovered that my B12 was not reaching cell/tissue level. Imagine if I had accepted these drugs that I was offered willy-nilly ? I would never have had my MMA tested at all - and so would have continued deteriorating. Complacently.

So carry on being "difficult" - it may save your life.

VellBlue profile image
VellBlue in reply to Cherylclaire

So well written, thanks for sharing.

Marz profile image
Marz

I feel more and more we are going to be looking after ourselves in the future. Debi Evans - ex Nurse and now Nursing Correspondent on UK Column News - ( on-line news programme ) and website - has great insight into NHS developments. She also has a weekly Blog on the website. Programmes are archived so free to watch at anytime. I think we need to be prepared for changes ahead - the ones already visible and the ones to come. Maybe HU was set up as part of the new way - where we share information and support each other - known as good medicine 🤔

Pickle500 profile image
Pickle500 in reply to Marz

Yes I do wonder sometimes how much the HU forums are reviewed, since the marketing dept. at the NHS reveal this forum in a window on the 'B12 and folate deficiency' page.

Surely someone is reviewing the comments and recognising that there are issues to address?

You would think, but evidently not.

Thank goodness for the internet and freedom of speech to break down barriers.

Marz profile image
Marz in reply to Pickle500

Long may it last ?

in reply to Pickle500

I do believe they are reading comments, even patting themselves on thier back, thinking THEY have achieved progress. Why do you think the NHS print out Medical Conditions diagnosed with information on where to find websites ie Pernicous Anemia Society. The NHS know people will do what ever is neccessary to get back to healthy living therefore relieving them of the burden.

Pickle500 profile image
Pickle500 in reply to

There are perhaps many issues that are simply beyond the control of NHS systems - access to B12 being one of them. Many of those in the know such as neurologists may be aware of the flawed system and know that not much can be done.

But general lack of awareness on B12 is endemic with GP's. So there is clearly a void that no-one can really fill. So I guess if we can all help ourselves then yes it lightens the load.

No-one can re-educate Doctors or change constitutional laws without effort, so this is the best we can hope for. And thank goodness we can import B12 ampoules

in reply to Pickle500

On the otherhand if neurologists know this and others, why don't some take a stand. Surely it is better on NHS resources to have a healthy society than one being dragged down for the sake of a vitamin. More people in work, less disablement and less suffering. I agree that importing B12 is are only option. Dr Chandy and Dr Sarah Myhill under caution and could not prescribe B12 Injections. There is something drastically wrong in Society if one can obtain drugs, cocaine,heroin, even co codamol yet cannot obtain a vitamin injection. Absolutely shocking.

Pickle500 profile image
Pickle500 in reply to

My personal belief is that it would completely subvert the system.

When I went for my blood test my GP wrote "Neuropathy?" at the top of the form. The lovely nurse who took my blood asked me "Are you diabetic", to which I replied no. She then said "Oh...?", as in 'what else could it possibly be then?'.

Knowledge of B12 is zero in the medical system. A few clever neurologists will know something about B12, but not a lot. It is incredibly complex. It's a bit like a whole new world that they haven't had any training in apart from how to treat it if levels are low, i.e. there is not a fundamental understanding of what B12 or other nutrients do in the body.

Vitamin deficiencies, GI problems, stomach problems, gut microbiome - none of it is known by medics. But these are the major illnesses we are all suffering from these days.

If they had a better or more uptodate understanding, they would NEVER prescribe drugs that erode the gut or stomach lining. But they do and there's money to be made from it.

It's almost like the insides of the body are never thought of - only the outside. If it can't be seen, it doesn't exist. And no-one can really see into your small intestine or your stomach, can they? Not fully.

So when the point comes that we start to understand the complexities of the gut, stomach, nervous system maybe B12 will step up and become more important. Until then, we have to all carry on pretending I think.

in reply to Pickle500

"it's almost like the insides of the body are never thought of - only the outside. If it can't be seen,it doesn't exist. And no-one can really see into your intestine or your stomach, can they, not fully.

This is an interesting point !

For instance in Hubby's case. The fact that he had an operation as a child, Pyloric Stenosis operation.

Unless the Doctor examined his tummy then how are they to know he had had an operation ?

So Clothes can hide a simple scar.

Pickle500 profile image
Pickle500 in reply to

Well yes indeed.

Also, how can we know if someone is depressed or doesn't have 'normal' levels of mental health? What about nervous system malfunctions that aren't picked up on rudimentary nerve conduction machines - like things out of the 70's?

FND diagnosed patients are told 'there is a problem between the hardware and software of your body'. This, to me, is the most stupid, dumb-ass statement I ever heard.

We are not robots? The brain is not a computer! Blood vessels and nerves are not software! We are complex beings with interconnected functions. The brain does not stand alone - it's wired into a million different functions. So if we are experiencing abnormal reactions, how could there possibly be a malfunction between brain and body? That simple doesn't make sense.

It's like taking your car to the garage and being told 'there's a problem between the engine and the wheels'. Right. So fix it then, mate.

Any Doctor with intelligence knows this. But since they cannot see inside the body, they cannot get evidence of illness. And therefore, science says it doesn't exist.

If there was only a more sophisticated way to measure internal processes we may just have some hope. But instead, all the money goes into Mars missions. I guess that's more sexy!

EllaNore profile image
EllaNore in reply to Pickle500

What amazes me, is our bodies are one unit. Everything inside is linked together to make our bodies function correctly. All it takes is one thing to be off and the dominoes fall. Why do doctors constantly act like one thing doesn't affect another? Everything in our bodies are linked eventually, it's one unit for Pete's sake. How can anyone think you're brain isn't connected to you gut, or the rest of your body and every organ in it?

And you're right about the mental issues this causes. It is one of my worst symptoms.

My brain isn't working right. I have a large patterned flowered rug and if my cat lays on it, i can't see him and I trip over him. I can really see him, but it doesn't register or something. I don't know how to explain it. I actually had to move the rug somewhere else. The large floral pattern is messing me up somehow. These things don't show on tests.

Pickle500 profile image
Pickle500 in reply to EllaNore

Absolutely. I recall a GP telling me as much, that 'everything is connected' so if you feel strange symptoms and heat in your body, it's probably stress.

So if they're using the framework of connection to diagnose stress, why can they not see it the other way - that stress, emotional exhaustion, burnout can lead to deficiencies and health problems that warrant investigation?

Perhaps you could fit your cat out with a new funky neon collar that makes them stand out! 🐈🐱

EllaNore profile image
EllaNore in reply to Pickle500

Exactly, Pickle500.

Haha, I don't know where my cats collars go but I buy new ones and never see them again. Lolol

Sleepybunny profile image
Sleepybunny in reply to EllaNore

Have you been investigated for migraine?

I have some strange visual migraine type symptoms including visual snow and can react to anything that I perceive is flickering, I also struggle with patterns that are very busy and certain colours.

EllaNore profile image
EllaNore in reply to Sleepybunny

No i haven't sleepybunny. That is very interesting. Im sorry your suffer from this too. It is so frustrating. I never even thought about migraines. I do have terrible headaches and I've suffered from severe vertigo many years. To the point of being in bed for 5 days, and throwing up. Also a strange strobe-light kind of blinking. Where i blink so fast and often, I can't see where I'm going and get very overwhelmed by it. No doctor has ever been able to tell me why. I don't get it as often, but i still feel myself getting the same extreme eye tiredness and minor blinking. Like it's trying to happen. It affects my speech, balance and coordination. Could that have been B12d all this time? I wonder. I don't have a doctor anymore, so not sure where to go from here. Not sure a doctor will want to take me on with PA. I'm a problem patient for sure, then i open my mouth and things get worse. LOL I just can't shut my mouth. I'm not rude or anything, just defiant and strong willed. They don't like that.

Sleepybunny profile image
Sleepybunny in reply to EllaNore

"strange strobe-light kind of blinking"

I can relate to this...one of the first signs I need more B12 is eyelid flickering.

Search online for "B12 deficiency blepharospasm".

EllaNore profile image
EllaNore in reply to Sleepybunny

Wow sleepybunny, I suffered from that for a long time. So they consider twitching, the same as blinking? I would have never guessed b12. Thank you so much. Another medical mystery solved by B12. That really bothered me. They tested me for Touretts and MS. Finally blamed it on stress.

EllaNore profile image
EllaNore in reply to

Ive had 4 abdominal surgeries and after 20 years of explaining my surgeries and not have a doc believe me, one finally asked to see me scars. I dropped my pants and gladly showed him. No doctor ever asked too see my scars. I've even offered to show them. If we look healthy, they don't see past that.

Cherylclaire profile image
CherylclaireForum Support in reply to Pickle500

Although this is becoming increasingly difficult.

EllaNore profile image
EllaNore in reply to Pickle500

Right? I have a hard time believing, they don't know. How can all of us say the things we say here and in public and doctors not hear about it? There is a hidden reason. There has to be. They can't all be this stupid. Has anyone even asked Why? Why don't you want to learn more? Why can't i have more b12? Why can a health spa give more b12 than a doctor? Why do I know more than my doctor in just 5 months of having PA? And having never heard of it before. Where did b12 get this reputation. It was a miracle treatment when it was discovered in 1850. What happened?

Polaris profile image
Polaris in reply to EllaNore

I asked a friend’s daughter, who is a doctor, why they were so reluctant to prescribe B12 injections and was told it was because they were afraid of being sued🤔

William Murphy, George Minot and George Whipple were awarded the Nobel Prize for their discoveries re. vitamin B12 deficiency - in the 1920’s I think - but, if the discovery that vitamin C cured sailors dying of scurvy is anything to go by, it took 70 years to trickle down.  Now I’m afraid it appears to be about more money to be made from drugs……..

EllaNore profile image
EllaNore in reply to Polaris

I was also told that by a gastro doc, when i told her i self inject. And we all do to save our lives. She said she understands, but they are afraid of being sued. I would sign any form they wanted saying i would not sue, if they gave me the b12 I need. But why would we sue? I would more likely sue because im NOT getting my b12. Sue then for what is what has me stumped.

Polaris profile image
Polaris in reply to EllaNore

I agree EllaNore it doesn’t make sense……..

I had a similar battle years ago to stay on a sufficient dose of thyroxine to stay well and continue to work. It was only when I reassured my very good family doctor that I’d take full responsibility, in writing if necessary, that she reluctantly allowed me to continue.

EllaNore profile image
EllaNore in reply to Polaris

I'm trying to find out how a beautician can get unlimited b12 to inject their clients. And from where. Do they buy from Germany or Canada and Mark it up? Do they buy in bulk at a discount? Maybe we should all become beauticians.

Polaris profile image
Polaris in reply to EllaNore

Now that’s a good idea 🤗 though a bit too late for me I’m afraid - people would probably take fright - and good questions…….

EllaNore profile image
EllaNore in reply to Polaris

😄😄🤗

Miss-guineapig profile image
Miss-guineapig

Aww Lady, I have just read your post and feel upset for you. I am a retired nurse/health visitor and I am appalled at the nurses attitude, just shocking. If you have the energy or feel mentally up to it you should complain to the practice manager, better still ask to speak to her. It’s just not right. I had a wonderful GP who fully understood PA but she has retired…so watch this space what will happen with me. The thing is I give my own jabs (I get prescription from GP) and I email them when it’s done. The dates vary from 8 weeks plus and no one ever comments. Wishing you all the best Lady xx

FlipperTD profile image
FlipperTD

Scientist, not medic.

I love articles like the one in this link. To think that people will actually buy a magazine at such a ridiculous price, delivering the 'wisdom' of the likes of folks mentioned in it, with no basis on fact. As Wedgewood mentions, it's the sort of article that prompts some doctors... So, these very busy professionals have time to read the likes of such tripe, but don't have time to see us face-to-face? Why am I not surprised?!

It sounds like you know what you're doing, and also suggests that the professionals don't. Keep on doing it.

petal02 profile image
petal02

I don't have a PA diagnosis (I've had 3 tests, all giving a negative result) and my GP came to the conclusion that I'm just one of those people who doesn't absorb B12 very well, but thankfully I get injections. But I'm so scared of rocking the boat (particularly as I don't have PA), luckily all the nurses seem quite in favour of injections, they treat it as a medical necessity and always give me a reminder card with the due date of my next injection. I could really do with injections more often, but I don't want anyone reviewing my case and stopping the injections, so I have a private top up at a local salon in between surgery shots.

I also have an underactive thyroid, and take thyroxine supplements, yet the thinking is totally different around this, once you're on thyroxine, you're on it for life, no one argues and getting a dosage increase is very easy. B12 is just as necessary as thyroxine, so heaven knows why it can be so hard to obtain?

I would be totally in favour of pharmacists giving injections.

EllaNore profile image
EllaNore in reply to petal02

That is terrible that we have to fear asking for what we need. I don't understand. I lost my doctor because I SI. So i see why everyone is scared. This is crazy!! What is the disconnect?

Carlosdoug profile image
Carlosdoug

sorry for the hassle you are having. I find the whole concept bizarre. If you are diabetic you inject daily unsupervised. If you are post operative you are sent home to inject heparin unsupervised, both “drugs”., but a vitamin oh no we are absolutely incapable of doing that unsupervised. The Madhouse is running the NHS it seems. My rant over.

Yahaci profile image
Yahaci in reply to Carlosdoug

Double standards endemic. Perfectly ok to force upon people mind altering drugs, the mechanism of action of which is unknown, by anyone. But a vitamin, heaven forbid what could happen..... You may actually feel better.

OonaSt profile image
OonaSt

I love your come back to the witch nurse. She should retire if she treats patients without any empathy. Good for you for standing up to her.

I self injected for a year, then went back to the clinic for shots monthly because it actually was all paid for vs me having to buy needles and the b12. Then I was told to take tablets. I didn’t ask any questions but I do now keep track of b12 levels. I must be absorbing over the counter tabs because levels are usually low normal range.

Since I had pyloric stenosis and had surgery as a baby, they removed the stomach area that absorbs b12 so recently told I don’t have the “medical book “pernicious anemia. For over 40 years I was never told I could have b12 issue due to this surgery, then I got so sick I couldn’t stand up and was sent to oncologist. That’s how I found out how the surgery affected me. It could have been all avoided and I now try to stay on top of my medial issues. I wonder how many more people had this surgery and were never told.

Stay strong and speak out and don’t let some rude nurse make you feel bad.

in reply to OonaSt

"Since I had pyloris stenosis and had surgery as a baby"

My hubby had this done also, was denied B12 Injections and been seriously ill for nearly a year. I am sure the operation did affect him. He has also many connective tissue disorders associated with B12.

I believe there are at least two more on the website that have had the operation too.

I came across a webtsite.

Bridgingthegap-birth-defect.org

Some forms of malabsorption such as pernicious anemia.

EllaNore profile image
EllaNore

Im, so sorry you were treated this way. I actually posted a link about an article about this the other day. I was very disturbed by it. I then spoke to a company that does this treatment. It is definitely for the wealthy. Companies that offer this service are not under a medical license or code so they are allowed to give more b12 than we are allowed to be prescribed. Something like 48 or 58 injections of 1000mcg in 90 days. It use a health and beauty code, not a medical code so they fall under a different set of rules. It is enough to really piss you off. How do the know more than doctors?

I'm so sorry your appointment went so disrespectfully! Glad you found your friends here for support. Unfortunately, it is more common than not, right?I don't know what we can do about this, but Im going to try. I feel like contacting some of these famous people and telling them the truth behind b12 and see if anyone will get on board with representing the truth about B12d. I don't think any of these people even know the real need for b12 in people like us. I am going to find their social media and post info about PA and tell them, the reality of this. If we all do that, maybe someone will hear us.

helvella profile image
helvella

From the Hello mag link:

Meanwhile, Sofia Vergara famously offered her wedding guests an IV drip session as a hangover recovery following her 2015 nuptials to Joe Manganiello.

I note, whether of any relevance or not, that Sofia had thyroid cancer. Don't have any details to hand.

EllaNore profile image
EllaNore

Hello, LadyBrothwell.

I wrote to a UK health clinic/spa that administers B12 injections. I asked what they had to do to be able to be administers of b12. I asked how they were allowed to give more b12 than a doctor. This is their answer. Thought it might be if interest.

Your email regarding B12 has been forwarded to me regarding administration.

--------

Firstly I am sorry to hear about your situation.

Our practitioners delivering B12 have completed a full level 7 qualification to become an Aesthetic practitioner to deliver the B12 intramuscular injection.

You would also firstly need to see our in house nurse prescriber to have a face to face health check.

Following this a course of 3 B12 injections would be £99.

This is to allow people to have an alternative choice as many people wish to have a more regular injection however as you have stated the NHS do not have the funds or capacity to do this.

The length, time to train and costs I do not feel would be worth you training to deliver it yourself.

I suggest booking a free health check and having injections here to complement your NHS injections once checks have been followed.

-----

Thought the expense of NHS training was an interesting comment. These are doctors. They should have already been trained.

LadyBothwell profile image
LadyBothwell in reply to EllaNore

That's interesting, thank for asking them. I heard that it costs the NHS around £25 per injection in terms of their time and around £2 per ampoule. Of course as medical treatment it is free to us or prescription charge only. If only we could get it regularly without the stress and unpleasantness!

SunnyWorld profile image
SunnyWorld

Drugs!! That made me laugh. Ridiculous the way they treat it like it's morphine. I had the same stupid attitude from a nurse. Us silly hypochondriacs should not request more than these nurses advise 🤣

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