Sorry in advance for a completely unhelpful post that will only make people cross but I had to share this with people who understand how frustrated I feel now - expected but no less infuriating.
A couple of months ago I finally decided to bite the bullet and ask my gp to increase the frequency of my injections, I was hoping for 4 weekly (currently 8 weekly due to neuro) I self inject in between and cannot go more than 4 weeks without feeling rubbish. I toyed with the idea for months before actually doing it because of the usual fear of being made out to be a hypochondriac or worse having current injections removed.
Anyway spoke to someone nice and reasonable (locum) who said they'd ask haematologist finally got a call back today from a different doctor who said no chance. No surprise there but...
Apparently the haematologist said there was no advantage to having more frequent injections and 'lots of patients seem to think its beneficial to have more frequent injections but this is purely psychological not physiological'
Honestly I was fuming but not wanting to risk my treatment being stopped and sensing a pointless conversation I didn't dare say that actually 4 weekly is keeping my symptoms at bay quite nicely I'd just prefer to be injected in a medical setting every time rather than letting my husband have a go and hope for the best! Part of me really thinks I should have but honestly don't think it would achieve anything, he didn't even ask me how I felt or why I thought I needed more regular injections - literally no concern about my actual health. The most I managed to respond with was pointing out how incredibly rude that statement was - he said he was just reading what the haematologist had said.
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Clare184
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Please feel free to let off steam here, it is a place where we do understand your frustrations and the way you have been treated or not echos with many of us. Plus, all the misconceptions held by the specialists around P.A./B12 D.
You are certainly "not alone" Clare184 as I've had similar encounters with both doctors and nurses during the fifty years I've had Pernicious Anaemia and I'm still with the same surgery since 1966 and have "outlived" every single one of them and am still "clivealive" at 81
At least you didn't get diagnosed with Functioanal Overlay as I did. 😡
I empathise with you and cant help wonder if these imbaciles actually refer to the guidlines - the bit where it states if the patient has neurological symptoms injections to be given every other day until symptoms improve! Their attitude really makes me want to spit fire.
You should have asked when this haematologist took a ruddy course psychology as it seems the consultant knows your body better than you without even listening to your symptoms or whats accuring.
There is over 27 thousand of us on here so are we all hyochondriac's ? You retained you frustration very well where as I would have gone hell for leather. The ignorance with regard to this illness beggars belief.
Which is another long complicated "medicalish way to say "you're making a big deal out of this and theres nothing really serious wrong with you".
My favorite part is:
"Feeling that medical evaluation and treatment have not been adequate"
Hmmm, I guess I just imagined my misdiagnosis of a B12 "overdose" 2 years ago and the recommendation to take 1/30th of the minimum B12 necessary to sustain human existence! All given while I presented with neurological symptoms which I explicitly told them were likely caused by B12 deficiency. Good grief!! Clearly I'm a crazy person who is not in their right mind and these wise and sensible medical practitioners just need to set me straight!
oh wow that is next level insulting! I'm so sorry you had to go through that, there is nothing more distressing than having your ability to stay healthy taken out of your hands. I hope you are managing your symptoms one way or another even if it means taking matters into your own hands like so many of us do it's disgusting that we are dismissed and labelled like this
The neurologist I saw was an arrogant 🐖 who blatantly refused to listen to my symptoms > I now have a case open against him with pals but all they do is push our complaints to and throw in the hope of losing it in the process.
If all these consultants can do is stick unfounded labels on use perhaps they would be better off working in a supermarket. I no more have Functional Overlay than a boil on my bum.
I have apparently convinced myself my symptoms are B12 related ? OMG it is all in my head bring on the straight jacket. 😱 It's not only insulting it is belittling and I told the consultant exactly that.
I have several diagnosed autoimmune conditions that were probably too complicated and outside of his supposed medical knowledge.
Yes I have esculated the case else where but not holding my breath with regard a result. It would be nice if I could make the said consultant sweat a little.
If I had not chosen to SI, I am sure I would now be sitting in a dementia home with spinal cord damage.
All I wanted was for doctors to apologise for what they put me through but no-one has and no-one is going to in the future. Even now I have no firm diagnosis and will always be vulnerable to having my NHS jabs stopped.
The GP surgery I had most trouble with refused to treat me and wrote me a letter hinting I should go elsewhere.
Everything covered, right there under "symptoms": there is no answer if every legitimate condition can be enveloped in this way.
Notice that the "risk factors" start with "anxiety and depression" - which is alsothe most common primary misdiagnosis for pernicious anaemia.
By far.
In a Pernicious Anaemia Society survey (pub 2014) of almost 900 respondants with PA, 44% were originally misdiagnosed before their final PA diagnosis. 16% of all the respondants were first diagnosed as having"anxiety and depression", the next highest result being CFS/ME with 5%.
My favourite "complication" : "financial problems due to excessive healthcare visits".
How highly judgemental.
Which could also be interpreted as being either "...so don't keep trying for a second opinion" or else, as this is from America: "...so save your money by leaving me alone!"
And who are targeted as the most likely to be suffering delusions about their own condition?
The poor, the poorly educated, the disabled, those with poor health (!), "other" mental health issues, problems functioning.
Does that not cover all of those less equipped or less able to argue back ?
Did I miss "suicide risk" off this list ?
Well, giving this group of people no chance of better health......
I can't say whether this is a real condition or not. I'm not qualified to make that judgement. But it appears, in this explanation at least, to be a long way short of "first, do no harm".
Martyn Hooper, founder of the Pernicious Anaemia Society, has given us an umbrella to stand under. Good, because it's really chucking it down out there !
I am lost for words...polite ones, anyway. How dare they.
by no means you are not alone, I despair with the whole situation. I am begining to think we are all hypochondriac 's, if it wasnt for everybody here understanding the situation doctors leave us in. It makes you wonder if the people who are supposed to be treating us are humans or robots.
Don't let them get you down, self injecting takes away the stress of dealing with (cant find the words to discribe them) idiots ! (Is that the right word)
They don't know what they're doing, Clare184. Literally, there is no-one in the medical field that understand anything about B12.
All they can go off is their minimal training on nutrition. And half an hour on B12 anemia.
If you have a significant absorption problem, where your stomach does not absorb B12, common sense would suggest you are at greater risk of faster depletion. It's a leaky bucket that needs constant filling.
Yours, and most people here's, situation is not the same as simply having a B12 deficiency. The haematologist did not study B12's effect on the blood because they do not learn this in medical school.
You are not wrong and it is not psychological. It is a Doctor who does not understand it because they were not taught to understand it. Much like problems with the gut such as IBS - Doctors cannot find the route cause and so it is a pscyhosomatic disorder. Technically, IBS cannot exist. But when someone needs 2 hours in the morning to poo and 2 hours in the evening too, HOW is that normal?
It's not normal. There's a problem. It's just that medical training limits their understanding of it. Hence your curt response, which is loaded with underlying aggression due to a fragile ego.
We are all suffering because we assume Doctors know about these things. Sadly, they don't.
It is totally outrageous how you , and so many members of this forum are being treated by the ignorant medical profession . So many dare not tell their doctors that they have to self-inject to keep reasonably well . Because patients don’t dare to tell them that they self-inject , they have you where they want you . .I was told by my doctor that I was they only PA patient at the surgery not to be satisfied with one injection every 3months . But I knew at least 4 patients who did self -inject , because I helped them to get their B12 ampoules from Germany . …….But they didn’t dare say . …..
But that is how they manage to control P.A. patients …..
Yes , you are right about their reaction to news that you self-inject . They will stop your injections . That’s what happened to me . So spiteful and ignorant at the same time . … And they swear the Hippocratic Oath !!!! The surgeries in the U.K. are turning into big businesses , that don’t have much to do with patient care . It’s sad but true . The GPs are in a cosy relationship with “Big Pharma “ .If P.A. was treated with a patented pharmaceutical pill , we would have no trouble in getting correct treatment . …… .
Totally agree, but would add that NICE is owned by pharmaceuticals. So every condition with a clear resolution e.g. B12 injection, is under treated, to make way for the pharma solutions. I agree its distgusting, but look at the history of medicine and the barbaric things they did. Also how many evil, greedy doctors there were.
In that situation, I think I would ask GP to find out from haematologist why they thought that more frequent injections were not helpful and what evidence the haematologist had for saying the need for more injections was psychological not physiological but I understand not wanting to rock the boat.
Tracy Witty who runs B12 Deficiency info might be interested in hearing about your experience. In past she has written blog posts about unhelpful letters specialists have written.
so sorry to hear this but unfortunately not surprising, I had an appointment with a doctor yesterday who told me it would not have been practical for me to have EOD injections as per NICE guidelines!! It just beggars belief
I was told the surgery couldn't afford the nurses time to do EOD jabs for more than 2weeks . Thats why Doc agreed to "let" me DIY,so all costs to me and non to surgery!! Good business.
my doctors don’t even supply the jab they give me a prescription which I have to pay for and then take the ampoule with me each time do really don’t see the problem with prescribing more but obviously just there lack of knowledge that holds them back .. hoping neurologist is abit more understanding
I’ve read nearly all your replies to Clare184’s post and see a growing weariness and mistrust of our GP system that’s hugely influenced by greedy pill pushing big pharma. I also looked at the video Pickle500 posted of Dr Rangan Chatterjee trying to make his very valid point about nutrition and lifestyle.
I live in Ireland and was fortunate to get in touch with a Dutch gynecologist who has been a great help. However it took literally months to get everything set up and organized here. When I approached my GP about getting my blood analysed he wouldn’t cooperate claiming that he wouldn’t be covered by his insurance company 🙄 I had seen him years earlier about burning feet and restless legs and he hadn’t a clue what the cause was - even suggested some drug for epilepsy! Wow I didn’t even consider that
So I finally found an independent group called Bloodworks who only needed a list of factors to look for in analyzing my blood and then they returned the results directly to both me and my Dutch doctor.
A nurse friend showed me how to self inject and I ordered everything I needed from Germany (Hervert B12ampoules) and needles from Holland.
Recently increased from twice weekly I now self inject 3 times a week and even though the symptoms became worse - I’m confident from my Dutch doctor’s advice, that it’s accelerated symptom reversal and that became its water soluble, you can’t overdose on B12.
She even recommended this forum to me at the outset. So glad I’m connected with you all because so many of you have given me really helpful answers to my queries.
Please don’t think that all water soluble vitamins can’t be overdosed . That is not the case . Some can cause dangerous symptoms . But yes , B12 can’t be overdosed !
I have a B6 story I can share here for more giggles. When I started treating my own B12 deficiency with large quantities of B12 tablets, a week or two into that I bought a standard store multivitamin . This multivitamin did have B6 but 4.1mg, quite a low dose. Along with the B12 I was taking more or less continuously, i took one of the multi tablets, one on a Saturday, then another on Monday morning. So two pills, 4.1mg B6 each time with an entire day between them. Well, on monday morning I started to develop the now familiar pins and needles in my feet. I went to see my GP about it and he said it was likely a B6 overdose. LOLOLOLOL. From 2 multivitamin tablets.... in order to get B6 neuropathy, you have to take more than 200mg for months at a time!!!! Ref ncbi.nlm.nih.gov/books/NBK5...
Such nonsense. Its hilarious though that he was happier to reach for this nonsense explanation rather than accept the reality that my B12 defiency was more serious than the "mild" deficiency he had diagnosed, and that this was just a normal part of the effect of the B12 reactivating damaged nerves. Maybe this could be reworked for a Monty Python sketch.
Many B12 deficiency symptoms can be easily dismissed as something else.
We have done it ourselves initially. Putting it all down to getting older, workload increasing, other stresses and responsibilities in busy daily lives, worry, grieving. Always an explanation, an excuse.
Until it gets worse, and we are struggling to continue working, then struggling to continue walking..... it took me quite a while to recognise that I should not be having to hold onto the bus-stop sign every morning in pain going to work. Not normal. How was I even getting through my working day ? I can't now remember, but it involved an awful lot of pretending.
It couldn't last.
For hair loss, angular cheilitis (split cracked corners of mouth), delaminating fingernails, etc, I would use photographic evidence. Pretty indisputable.
For walking problems, or the strange yawning thing (the sighs) etc - why not get someone close to video you ? Hard to argue with that - and it may be recognised from work with previous patients.
For those symptoms not so visible and never present when you need them to appear (at consultant appointments that you have waited months for) - you will need to rely on a daily symptoms chart. With indication for where injections given, so that a pattern might emerge regarding when treatment stops being so effective. These are often the more worrying for us and family: memory loss, uncommon behaviour/mood changes, lack of concentration, word-finding problems, etc.
This could all be backed up with a diary. And by a partner.
All of this could, of course, be seen as obsessive by some, dismissed as nothing do with B12 deficiency by others.
But I was an NVQ assessor -
and what this looks like to me is presentation of a valid portfolio !
If there is something else going on besides B12 deficiency, or perhaps additional conditions involved, the onus of proof should be on them. But a harmless treatment frequency trial for all that effort would not prevent or hamper any further investigation.
PS: A supportive GP, eyes wide open, essential for this.
What a tale you have to tell . Thanks for letting us in on it . You have had one hell of a battle . And these battles are going on now still
. It’s truly a disgrace. I cannot believe that so many PA patients are going through these debilitating battles still . I can’t believe that i’m living in a U.K.whose NHS is so shockingly neglectful . It makes me weep .,
The only way any Doctor will understand is if he or she either has the condition or lives with someone with it. We are given 10 minutes (if we are lucky) to explain things and that is without doctors butting in dismissing everything we say. They don't even listen .
The Mayo clinic link from Technoid above demonstrates an attitude where the rich and well-educated well (doctors for instance) are right on health matters, and the poor and poorly-educated ill are deluded - and if not, have not got the resources to prove it.
Does this sound like a country that prides itself on having no class system ?
There was a reason that the NHS was set up.
There is a reason why our healthcare system remains ring-fenced by the public, despite being on it's knees. Because if we don't protect it, it won't be able to protect us.
Look at the alternative.
So don't fall out of love, wedgewood : they haven't all stopped caring:
I had a supportive GP who noticed that the B12 injections were having no effect, who was willing to look for better answers for what she was seeing, who then gave me a diagnosis of functional B12 deficiency, who gave me frequent injections because they clearly worked for me, who looked for guidance and sent me to experts when they stopped working so well. I still have had no alternative cause or diagnosis offered. So right back at the start, she was probably right. I continue to self inject at the frequency that she gave me, because I already knew it worked for me. Most of the time.
No-one yet knows why some of us need frequent injections, and how to identify that group early on. What we know is that time is valuable. Your responses to those desperate enough to decide on self injection have undoubtedly given many people fresh hope -and a life worth living again.
Hope that results from the PAS research and the NICE guidelines review due out in 2023 make a difference. Proof, unity, education.
Gosh Clare184, that is appalling! I am so sorry, I would be livid!! The scary thing is that if you read other illness threads here like endometriosis and adhesions etc, docs know nothing about those either, people are saying the same things we are. There is no excuse for this lack of simple B12 knowledge!
We have to go into a doctors office, take off all our clothes or not and put on a paper gown, and sit on a table vulnerable and completely at a disadvantage and tell someone just how terrible we feel. We aren't going to an ice cream shop for ice cream!! We are not happy and in a good mood, we are desperate! Sitting there exposed and listening to idiots ask us what we did over the weekend. I did nothing as I was bed ridden. Why what did you do? I went golfing!! All the while in my head I am thinking, you don't hear me, you don't see me, you don't care and you don't want to learn. Why am I hear? I'm suffering and you want me to be cheerful and tell you what I did over the weekend.
I am lucky I can afford to treat myself, barely. Where so many can't. They are stuck doing what these crazy idiots say and slowly, painfully dying. Imagine being in a care facility, helpless to do anything for yourself and slowly going senile and suffering terrible pain and all you need is adequate B12. That is my greatest fear, as I have no family to care for me when I am unable!
How did it go from a miraculous, lifesaving, treatment in 1850, when the treatment was discovered, to tabu? How did B12 get such a misunderstood reputation? And why, in 172 years, haven't they figured this out? This is crazy. Hundreds of thousands of people aren't making this up. They have to know there is a huge disconnect here! WHY? Why do they REFUSE to listen and hear us?
We have a TV show called the Doctors here in the US. They are looking for people who have survived a life threatening medical condition, to tell their story on TV. I was thinking that is a great opportunity! But I don't know enough to go on there and talk with confidence about it. I would not be able to give it the justice it deserves and needs. I suggested to someone from here to go on. I hope he does. Do you have a show in the UK like that? Can someone well versed in this go on and talk about their life saving treatment? That is what has to be done in order to bring this to the light. We have to expose this craziness on a highly public platform. The more we tell about this the better. Eventually it will stick.
Make posts on social media. I post the symptoms and links to information on social media, if just one person clicks on it... great! The more we put this out there the more people will talk about it. Someone will know someone that has the symptoms and say, you know I saw something on social media about this, blah blah blah. We have to talk about it outside this forum. I have printed out copies of information to give to people I feel could benefit. I talk to people and tell them my story and they say things like OMG my mother is blah blah blah... Yesterday my post office lady was tracking my B12 package for me (lost again) and I was telling her about it. It turns out her mother is suffering from many of the symptoms, so I went home and I printed out the symptoms and links and wrote down tests to ask for. She started to cry. Her mother is suffering and no one will listen to her. Her family dies at young ages from unexplained abdominal issues and stomach cancer!! Uncles, grandparents fathers. I hope it helps her.
Anyway, sorry for going on and on. Just talk to others and tell them your story. I guarantee they know someone who needs help. Really, we are the only ones that can change this. We have to speak up.
I think possibly the only way things will change is if everyone with B12 deficiency gets diagnosed in good time so eventually sheer weight of numbers of diagnosed patients forces health professionals to take notice.
Right? I know at least 4 of the people I told will absolutely get tested and maybe even their loved ones. I know in my tiny town, I have stirred up the conversation. Word spreads fast in a small rural community. Maybe my doctor who gave up on me, will be bombarded by people asking for tests. LOL wouldn't that be a hoot?
Do go on, it’s those informal chats. I do get on my soap box. We are trying to educate, help and save. It may only be drops in the ocean but it can be the start of making waves!!
Thanks Narwhal, EXACTLY I'm sorry I do get carried away. But if I tell two people and they tell two people it can really add up to a lot of people knowing about B12. Already, just because I /we all have PA/B12d, our circle of friends, family and doctors, now all know about it too. I made sure of that! LOLOL at least 30 people I know, know about it now that never heard of it before. To be honest, I think it is my way of dealing with my fear of growing old with this and ending up somewhere that I can't help myself any longer. That scares me so much.
I love the tattoo idea Narwhal. The forehead would be a bit conspicuous. Lolol. I think I'll design a tattoo for myself. Where did you find the tshirts and bags? I want some!
I’m sure I read that you are on the other side of the pond so postage may be expensive. As a graphic designer, I’d love to see what you could come up with.
EllaNore, thank you for all that!! You're damn straight! "You don't see me, you don't hear me, you don't care, and you DON'T want to learn"
My primary insurance won't pay for me to inject myself at home. I called to try to appeal it and told the insurance worker on the phone that it's like needing insulin injections and why should I be forced to go to the doctor every time? At first she was very snotty to me and I just patiently listened to her though I wanted to punch her through the phone! She put me on hold and when she came back she told me she wanted to do an appeal form for me and that her mother had pernicious anemia and died over the pandemic, and had apparently not been able to get B12 injections because it had been to hard to get her to the doctor. Her mom had been able to get her injections at home and then her insurance changed and wouldn't allow it other than at the doctor.
That is simply heartbreaking and unbelievable! I'm sad for her mother and I'm sorry you are struggling to get the treatment you need. See, her mother died from PA, so now she's on board. We simply have to tell everyone about this. The squeaky wheel gets the grease. We need to just talk to people. Tell people. Go on local TV shows. Post on social media. Anything we can. I wish i knew more so i could write up a handout pamphlet. Like The card that Sally Pachlock handed out. Especially starting with why frequent injections are necessary. We can change things but it is up to us to spread the word. Just talk to people.
"I wish i knew more so i could write up a handout pamphlet"
How about some business cards or postcards with a couple of B12 websites on them. If people ask me for info, I suggest they look at Pernicious Anaemia Society website and B12 Deficiency Info website and this forum.
Well, that is a very good idea sleepybunny. I am a graphic designer, so I could definitely do that and if anyone wanted some, I could upload the files for people to download and then upload to a printer and print their own too. I will design something and you can tell me what you think. Then I will share it with everyone. Great idea. Something pleasant and positive looking but simple. I could put symptoms on one side and web links on the other. Would you all want a business card size or a recipe card size?
I’m currently being investigated for epilepsy and been asked to give robust provenance of pernicious anemia to the consultant. Difficult because my GP has poorly kept medical records they cant. Unfortunately I lost my blood test copies which I was smart enough at the time to ask for. Thankfully I found everything mentioned in a referral letter which should suffice. But I discovered while writing to the neurologist providing the necessary evidence this article ncbi.nlm.nih.gov/pmc/articl... which has a heading about placebo being unlikely due to the physiological demonstration of lowered homocysteine etc which is known to be cardiovascular and neurological toxin. I’m sure the letter and evidence will be ignored but I hope the link helps others.
For myself I know it’s not psychological…..the physical relief is just too plain within an hour of an injection. These days I think that’s all that matters and stop giving over of my life to unaware doctors unwilling to read summary sheets or medical research or simply listen.
When I searched online for "epilepsy b12 deficiency" I came across some research papers/case reports that suggested an association between B12 deficiency and epilepsy.
I've also read some anti-epileptic drugs are associated with low B12 levels in some studies.
Let off steam by all means. We all know what happens and it’s pointless banging ones head against a brick wall. I just gave up and started self-injections, like many others have. It would be nice if the medics understood the problem, but I don’t see it happening anytime soon. All the best, keep well, despite them🥰
Re: "Apparently the haematologist said there was no advantage to having more frequent injections and 'lots of patients seem to think its beneficial to have more frequent injections but this is purely psychological not physiological' ".
This doctor is making it up, because no such evidence exists. That is true because there is virtually no research evidence of any sort about treatment of the population of people with B12 deficiency neural symptoms. In fact, one of the best research articles on B12 deficiency, "The Many Faces of Cobalamin (B12) Deficiency", diligently provides references for virtually all assertions except for one. When it came to treatment for neurological symptoms of B12 deficiency, the authors were reduced to citing the brochure that accompanies hydroxocobalamin: "In case of neurologic symptoms or abnormalities, it is suggested to administer hydroxocobalamin, 1000 mg once or twice weekly for a period of up to 2 years, and the package insert for hydroxocobalamin has included these particular instructions for several decades." I think it is safe to assume that if a research source of this information existed, the authors would have cited it.
Obviously, for this doctor to assert that he had such detailed information regarding B12 deficiency treatment is ludicrous. In addition, he's wrong. Advisory bodies routinely recommend injections weekly or more frequently for patients with neural symptoms.
You might consider printing out "The Many Faces of Cobalamin (B12) Deficiency" (2019), highlighting pertinent parts, especially from the treatment section (quoted above), and providing the printed copy to the doctor.
More power to you Clare184. Excuse me, but the haematologist sounds like a tool! Wait, tools can be helpful for fixing things...He sounds arrogant and 'mightier than thou'.
Would doctors be so convinced and arrogant in their opinions if their health was declining over years of neurological damage?
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Update GP lied to our faces and some links for purchasing b12 please 
Where has all my B12 gone?
Heartfelt thanks to all.
Keep going, there is hope!
