First off let me say I like my GP, although I must admit to rubbing most of them up the wrong way. I don’t know why this is, I’m not like this with anyone else. Indeed in my working life I worked with the great and the good, the famous and infamous and didn’t really have a problem with anybody, well OK I had a few run-ins, but in 40 years who doesn't? I just like to think I fight my corner. Anyway I was at my GP’s just before lockdown and he asked how my B12 was, a general query as I hadn’t gone with that, so I said I was fine, which is the truth, but it’s also because I take no notice of what Dr’s say and self inject once a week. So he suddenly went, “we have a constant stream of old ladies in here going, ‘I need an injection, I need an injection,’ my god they’ll be wanting amphetamines next, they only want it because it gives them a hit.” To say that I was dumbfounded is putting it mildly, he then went straight on to discuss something else and I left thinking I can’t believe this, these poor people are literally begging for a vitamin, not a drug, a vitamin, that costs nothing and you see them as whining because they want a “hit” GP’s are basically keeping people alive, not keeping them well. I just thank god for forums like this where you can get help and advice from people who don’t see us as whiny old people. I think if it wasn’t for such help I’d be dead and I’m not being dramatic when I say that I honestly believe it.
this is what GP's think of us. - Pernicious Anaemi...
this is what GP's think of us.
Hi,
Perhaps you might one day have an opportunity to pass on some useful info to those poor people.
If my GP made a comment like that to me, I'd say better to give them a B12 jab than have to deal with the consequences of under treated b12 deficiency such as dementia, sub acute combined degeneration of the spinal cord (SACD) , incontinence etc etc.
I left a detailed reply about impact of pandemic on B12 treatment in UK in next link.
healthunlocked.com/pasoc/po.....
I wrote very detailed replies on another forum thread with links to B12 deficiency symptoms lists, causes of b12 deficiency, info about tests for PA, list of B12 books, list of B12 websites, more UK B12 documents, letters to GP about B12 deficiency and other B12 info including hints on dealing with unhelpful GPs, which you might find helpful.
healthunlocked.com/pasoc/po...
May be you could ask GP surgery to put up a PAS poster.
pernicious-anaemia-society....
B12 Deficiency Info also have posters
I am not medically trained.
Yes how I agree ! It is a fact that as you get holder , you produce less and less stomach acid , so you are not so good at absorbing B12 . Also, Drs prescribe the likes of Omeprazole and other PPIs which annihilate stomach acid , at the drop of a hat , and let people continue taking them for years . The cost of that to the health service is immense . . But no complaints about that — have you ever wondered why not ? .........................
Anyhow what you describe , and the attitude of the doctor, tells us a lot . B12 ampoules are so cheap and it takes a nurse about 5 minutes to inject . Why is it such a big deal?
It's so wrong... And baffling isn't it?
Just appalling.
"I have the power to keep you feeling terrible while I treat you with ignorant derision".
"I will belittle you for something life threatening, which, while very real, I know nothing of so I will treat you with contempt!"
Learning about this and seeing "the bigger picture", as a way of learning to cope with it, has changed my who understanding of human behaviour.
And it's no coincidence the genger and age that it most hits gets dismissive treatment.
Only my opinion
Well said.
A pity that GPs end up feeling like this - you would have thought that if they were seeing a constant stream of elderly patients saying that their treatment wasn't working it would lead them to question the adequacy of the treatment rather than assuming that their patients are 'addicts'
I really wish that everyone who says that would have an injection. Then they'll realise it's all rubbish about getting a 'hit' or becoming addicted to it etc etc.
It beggars belief, quite unpleasant. I wish that this doctor would suffer with this and have to eat his own words.
The last neuriologist I saw does suffer .
He openly admitted he needs 6 weekly b12 injections. He is more than ready for it. His mood is affected. I witnessed irritability ect on one visit.
It 'appears' many do better on a higher frequency. He said.
He still couldn't colate some of my symptoms to b12
deficiency.
He didnt get those ones! Also I mustve recieved treatment too late. Great I thought .
He is definitely one that had only looked onto it more as personally affected.
It's down to no big drug company funding research ad no money to be made
Preventative and cost saving and health saving not on the agenda it appears.
Many of my friends are doctors, nurses in the NHs.
Most shocked and surprised. Some j think doubting this coukd be b12 !!!
All dont get the frequency of Injections . Some give them!!
Addiction often used . I've never had a high of even pleasant feeling. Just less ill and able to walk.
Would I choose injections over tablets .NO.
A few brave souls have 4CD suggested j might be depressed. I've said I'm surprised I'm not.
Not being believed is the worst thing oug
After not being understood.
Sure I've questioned my mental health.
I would certainly take tablets if I'd benefit.
Making pre c9cepted judgements without listening is getting worse.
I wish they had seen us at work ect
I remember a doctor saying to me when I complained that I was tired for you know how many people I get complaining of being by tired all the time? It make up a large percentage of my work’. Interestingly, since I have started taking b12 I have started waking up in the morning without an alarm. I have never in my life been able to do that. I can now manage on 7-8 hours sleep whereas if I got through the day without a nap I was probably feeling half dead.
This is shocking but common I imagine; a few years before diagnosis I was referred to a neurologist who said 'I see a couple of women a week, usually younger than you, with these symptoms' he then prescribed an antidepressant (which I did not need or take). My gp a couple of years later became annoyed that I would not take antidepressants. I knew there was something else wrong with me. This is a public health scandal; how many people do not have dementia but are just need of b12!
Mh Gp said on last consult . You wont get better as you wont take tablets.
Ivd tried amitriptyline ivd tried HRT. Ivr even paid twice in a trance my prescription fee and taken sertraline home!!
But then thought it through.
I know alot of people on it and have done well. They were clinically depressed or having an emotional crisis.
I wasnt.
I now think my Gp just impatient with me. She also used to say shes learning from me. Not good.
Shd is trying bug gets exasperated. She says I've been ill for too long now!!
Ahe finally prescribed b12 ampoules to self inject sc.
As I didnt argue just kept asking.
The nurses are not happy.
One said last time you need to move on.
What do you reply to that???
Similar to my experiences and this went on for many years.
Now I think it’s strange that no one believed me that I was weak and in constant pain. No blood tests were done either and no diagnosis while I was offered antidepressants and diazepam.
You are right that this is a public health scandal that is hidden. This is the reason no one takes responsibility for lost lives, ruined careers, relationships and resulting mental health problems.
When I finally found out that I had PA, by chance when abroad and having some private blood tests, my GP was astounded that someone in their 40s who was not elderly, not an alcoholic or a vegetarian could suffer from this condition. I listened when she called her colleague to ask for advice. Clearly she had NEVER diagnosed PA before.
And there is a postscript. I complained to the local PCT and the practice manager about my late diagnosis and my complaint was dismissed as baseless.
At the time my b12 levels were down to 80 and I was barely alive. I also lost my job after trying to work part time for a while. And to add insult to injury the same GP charged me £25 for a letter to my employer to consider part time work. Throughout all this I was treated as a nuisance and a hypochondriac.
But...a few months later when the nurse was giving me an injection she mentioned that the fridge was full of b12 ampoules and this is something new. Clearly many more patients were being prescribed b12 all of a sudden. I like to think this was because of my complaint.
So difficult to fight for what you need when you are so ill, too. So much prejudice and ignorance. No abject apologies - or even refunds.
Losing your job is hard. Keeping it sometimes harder.
Having your complaint dismissed as baseless- a disgusting decision.
You filled their fridge, though, and that makes you a hero. They now know what PA looks like: it looks like unable to work, barely alive, in constant pain and weak. It looks like you.
When read aloud, that doesn't sound like something to ignore, does it ? Well, now they can't- because of you.
I hope so. Being treated as a nuisance I'm used ro. Horrid.
Doctors hate being wrong. My daughters doctor did apologise for missing it
Getting an apology is satisfying.And hopefully the GP would have learnt a useful lesson.
But somehow I don’t think this quite enough as those important lessons are not shared throughout the NHS and each of us are fighting our own battles over and over again.
Thankfully in the last few years PAS have been pushing for change. But there is a long way to go before this condition is understood by the largely ignorant medical profession.
For now at least the huge costs of this ignorance are paid by us the patients.
What disgusts me most about this attitude is the total lack of value placed on the "constant stream of old ladies" and their individual needs.
The reason for the constant stream of old ladies is because they are being undertreated and not being listened to on the first, second, third etc appointment. Quite often they won't argue back or put up much of a fight. It's rude.
When I used to go with my mum to consultants about her heart, I told her in front of them:
" Don't be polite. They won't understand that this is part of your upbringing. " I really worried about that.
You just can't win this, can you ? If you're younger, they are suspicious that this might be a vanity thing (anti-ageing, slimming, Madonna does it, whatever) -and if you're older, it's depression -or an addiction.
Either way, stupidity is assumed:
I saw a Inherited Metabolic Diseases consultant who told me that he was quite aware of the "euphoria" associated with self-injection, and a Haematologist who told me that B12 is "highly addictive".
To the first I said "That might be true of a healthy person, but I wouldn't know. I'm B12 deficient and it just stops me getting worse."
To the second I said "Can I have a copy of the research information on that ? Only if this is true, I will need to contact the Pernicious Anaemia Society immediately so that they can warn their members." Yes, still waiting for that.
Years ago, when I was with the nurse having injections at my local surgery, she commented that I never made a fuss about the injections. This wasn't inherited politeness, I can assure you, it was because I didn't feel the injections at all at least for the first 8 months- couldn't even tell when they'd started or finished ! Strangely, she then said "Mind you, almost all of my other B12 deficient patients are old men and they moan at everything." Strange because it means that women obviously aren't getting diagnosed with B12 deficiency there- and stranger that men are also being disrespected !
(But at least treated.)
It does make me wonder if the “explosion” of dementia in this country is, in part at least, due to untreated B12 deficiency. I would still be a breathless, low energy wreck if were not for this forum. I S/I every 6-8 weeks, I know when it’s needed and it certainly doesn’t give me a “high”.
I am furious. Furious furious furious...
Thanks for a brilliant letter and account of this madness. Furious! X
We are all raging and so so angry.
Sadly this is not making any difference.
The NHS ship sails on wrecking lives on the way.
I came to the conclusion that no one cares because it’s ME who is paying the price.
Now I’m working hard to manage this anger as it’s not helpful. In any case how can I get my career back and many years of wasted life? Financially and professionally this was a disaster, quite avoidable if anyone had only bothered to listen and look at my pale face and blue shadows under the eyes.
But... one day we may change all this once the real costs of this medical ignorance are fully understood. The fight goes on 💪💪💪
Yes the fight goes on. One GP at a time is simply not good enough...we need to change the system that results in their not being able to see beyond the end of their noses.
I spoke to one lovely rather aged retired GP of the old sort and he told me they used to regularly give B12 injections as a matter of course to older patients. It was quite the norm.
I agree with all the comments, my doctor insinuated that it was all in my mind, really angry, as I am on shielding at the moment, and up to hi doh. Have written to MP so awaiting to hear how I get on.
What is CAUSING Vb12?
What do you think? Advice please new to this.
Gp stopped my b12 injection and Iv had pernicious anemia 11 years , is this allowed apparently due to new research says my gp
I don't think I know what is wrong with me
