I am so sad - I have been a nurse and highly trained now for 46 years , I’ve had PA , with lack of intrinsic and malabsorption, I have fibromyalgia, iron deficiency- I work over 60 hrs a week in GP surgery in management and see pts — what hurts it’s seeing how many moan at what ‘ the GP doesn’t do ‘ they won’t give me - do that ‘ our hands are tied - we have to follow NICE guidelines . I know 80% of pts have B12 of over 1000 and insist it’s needed - it’s addictive cause it gives you 24hrs of well being .. we have to work at well bein - my iron is 2 - I have neuropathic pain bla bla - but I too have responsibility - please stop blaming your GP’ because for a majority they are correct . Sorry I’m tired of seeing my colleagues slated
Gp surgeries : I am so sad - I have... - Pernicious Anaemi...
It is always good to hear the other side of the story but even if people's B12 levels are over 1000 if you have pernicious anaemia those figures are meaningless! B12 can't be used in the body and it does appear as is obvious from this forum that GPS are not following the guidance and refusing what are ife saving drugs for people who cannot absorb. Gps can't be experts in every subject, but some certainly don't like to listen, as I found out personally, luckily I worked in a hospital at the time which saved my life! You say you had Pa, are you cured??? I'd love to feel better after 24 hours, 1 injection does not do that to me, even loading doses took 2 months to make a difference. I had accidents and nearly lost my job too... I self inject and nearly have my life back. Ps my daughter is going for yet more brain scans and seeing a Neurologist as her Gps have found nothing wrong with her 'normal ' B12 levels.....🙄
I am quite confused about how somebody who dosnt take injections can have high levels of B12 in the body if they cant absorb,
Surely if it is the bloodstream, it must have been absorbed into the blood stream? or am I missing something?
I believe the Liver stores the B12, but the body cannot absorb it, hence levels are high in PA patients, which some Gp's then believe as your stores are good you will survive off them. Your stomach will not allow the absorption. Very basic reply, sorry I should be working p.s. I work for a GP so do not want to get in trouble!
I have Functional b12 deficiency which means I have lots of b12 floating around in my blood but very little of it getting into my cells I therefore have to inject frequently to flood my blood with b12 in the hope that more of it trickles over into my cells,which it does,I’m unable to store it so excess is peed out,I’ve never felt so well since doing this,I’m not 100% as have other underlying health issues thanks to a whole range of incompetent gps and consultants not doing their job right and not doing the proper investigations and by the way they get great pleasure in telling people that Nice are a set of “recommendations“ that they can choose NOT to follow.
I’ve read you need biotin to absorb b12, I have a b12 deficiency and I had a lot floating around myself and happened to read it needs biotin to be absorbed. My blood level was 1600 and my urinary Methylmalonic acid was high which meant I was very deficient
Thanks for that Gigi 216
Yes I take B sups including Biotin,
(I think that's Folic Acid?)
No. You do not need biotin to absorb B12.
No biotin is not folic acid.
No you do not need folic acid (or any other sort of folate) to absorb B12.
What you need to absorb B12 is a source of Intrinsic Factor and a working pancreas and ileum.
B12 cannot function when there is a biotin deficiency, since the starting substance required by B12 for its relevant reaction, methylmalonyl-CoA, is missing.
Biotin deficiency can thus lead to a functional B12 deficiency, even if sufficient adenosylcobalamin is present
Nutrient experts such as Dr Bodo Kuklinski therefore recommend taking biotin as part of a vitamin B12 therapy:
“Vitamin B12 has no effect without an accompanying biotin intake […] Under vitamin B12 therapy, the need for biotin increases, and if not supplemented, skin problems, brittle hair and nails as well as spots occur. These are an indication of a biotin deficit […] With nitrosative stress we often found marginal or pathologically low biotin concentrations in the blood. Without biotin vitamin B12 does not work; the effects of B12 decrease without biotin substitution” (5).
I feel compelled to say something on here in support of Frenchiebabe sadness and concerns.
I have read a lot of posts that criticise GPs. GPs are obviously highly trained and knowledgeable. However they are essentially gatekeepers in that they are trained to know a little about a lot but when it comes to the minutia of individual medical illness they are there to refer on to specialists.
Medical practices are under huge financial constraints and so of course have to find a way to ration services.
I think it's a shame that some posts proclaim doctors not to care about their patients. This is a generalisation that obviously is not true. All those years of training and dedication. It must be hard for professionals to have to stick to guidelines that they quite clearly can see do not benefit patients. New science establishes change but it can take years for guidelines to change.
Let's recognise how lucky we are to have this fabulous free service. When we see bad service or recognise lack of knowledge re our personal situations let's gently share and educate. Nobody sets off to work on the morning thinking how can I do a bad job today.
The great majority of doctors out there do the very best that they can in extremely difficult circumstances in what can be a sometimes hostile environment.
I work for a GP and yes they are "gatekeepers" and cannot know everything about all illness, but sadly even when presented with facts and evidence from hospitals and other Clinical specialists they refuse to take that on board, and as I have found from personal experience they can get "very defensive" when presented with results from others experts. They are running a business and have to consider their funding, but can be found to totally ignore symptoms and evidence that B12 injections are life saving. The information and guidance has been around for years, and you would expect that GP's to be aware of new and changing guidance and not to dismiss patients as having "mental health problems".....
I see time and time again on here that GP's are asking for B12 blood tests for PA patients, why? It is totally irrelevant and they know this! PA cannot go away or be cured.
I know, absolutely. As DebraNL pointed out there us inadequate training on nutrition. Also one expects medics to stay up to date on with current scientific findings and knowledge. Thank goodness for the internet. We as patients can seek out information ourself. unthinkable for many just 20 years ago!
I was lucky. My GP admitted he knew little about PA and B12. He read the BMJ paper I gave him and he read Martyn Hooper's book - and he took it all in.
Most other doctors I've spoken to have listened to what I say. One neurologist used to book me in as his last patient so that he could ask me questions about PA, B12, autoimmune gastritis and neuroendocrine tumours.
Just one doctor was an idiot. The haematologist who told me that I didn't have PA because I hadn't had an IFAB test (not because it was negative - because I hadn't had one). He also told me he thought my complaints were more what he would expect from a woman!
I have read that testing B12 whilst supplementing produces skewed results and is currently being used to stop injections. ( many posts here ) The Guidelines do refer to this issue.
As you have PA I am wondering if you have been tested for Hashimotos - another auto-immune condition. Low T3 is often involved with Fibromyalgia and as it is very rarely tested the connection is not made. Also a VitD level below 100.
I was diagnosed with Fibro in 2000 and with Hashimotos in 2005. Once my thyroid was optimally treated my fibro symptoms ebbed away. I am now T3 only which I buy myself - and GP approves.
My B12 issue was caused by extensive gut surgery almost 50 years ago. I now self- inject weekly ... I was not warned about the workings of B12 at the time and my levels bumped along the bottom of the range ..
Surely you mean that you 'have' PA not 'had'.
maybe you need to take your-self off this site, if you find it upsetting. The fact is, many people who work in health are not adequately trained in nutrition. (I have given a few personal examples below). I appreciate that is not their fault (you don’t know what you don’t know), but the result is that, many people are not getting the treatment they need. I am sorry to say this, but from what you have written, it sounds like your particular GP practice may also not be serving their patients well, with respect to B12. It sounds like they haven’t even sorted out your own health issues.
If you want guidelines, then I suggest you use the BSCH Guidelines for B12 and folate deficiencies, that state, “The clinical picture is the most important ….. there is no ‘gold standard” test to define deficiency”. You can look it up.
If, as you say, “80% of patients have B12 levels over 1000” I can only assume they are already on treatment. I am sure you know that once B12 treatment has started, any further blood tests are worthless? Your GP practice could save its money on pointless re-testing and use it instead to treat the patient’s symptoms.
My daughter in law is a newly qualified doctor. Over the last 7 years, she received half a day’s training on vitamins/nutrition. Compare that the training they have in drugs, which continues weekly with all those tasty lunches provided by drugs companies selling their wares. The drugs companies have a significant ongoing influence over what is taught in medicine. Think about it- if someone got well with good food, exercise and a few supplements, they wouldn’t need drugs, so no money for the drugs companies. Can you honestly see a drugs company promoting something that would ultimately lose them money?
I used to be an NHS physio. In my training, diet/nutrients was never mentioned at all and it should have been. When I think back to some of my patients, I can see now that some of them very likely had B12 issues. I really wish I had known about nutrition then.
I remember lecturing to GP’s on how to treat acute musculoskeletal injuries and was shocked that they did not have one clue. I have watched operations where the consultants made mistakes. I have sat in consultant rooms where the consultant treats the patient like an idiot and dismisses them.
Personally, I have spoken to 3 haematologists who have absolutely no idea about vitamin B12.
My sister in law is a nurse in Special Care baby Unit. She had never heard of B12.
My husband’s cousin is a consultant Anaesthetist. Same again.
I could go on, but I think you get the idea.
There is a significant lack of knowledge in the people we put our trust/ if not our lives in.
“…I know 80% of pts have B12 of over 1000 and insist it’s needed - it’s addictive cause it gives you 24hrs of well-being”…
Did the GP’s tell you B12 is addictive?? Cause it sure isn’t written in any scientific medical paper I have read!
Please do your own research. A good starting place for you would be Sally Pacholocks book, “Could it be B12.” I am sure you will learn a lot. Maybe you could then do an in-service training day for the rest of the staff.
Also, why shouldn’t a patient be given B12 daily, if it's needed. People receive insulin daily because they need it. My mum has been prescribed statins and anti-depressants daily because … well you don’t really want to know what I think of that. But isn’t it odd that GP’s happily write out multiple prescriptions for drugs, (rarely reviewing- in my opinion- if they are actually working or considering possible interactions) All drugs have side effects, some very harmful, yet they quibble over a vitamin that is essential for life! Why doesn’t your nurse trained/scientific mind think that is ridiculous?
Look up the number of deaths caused by Drugs used as prescribed. pubmed.ncbi.nlm.nih.gov/253...
See if you can find out how many people die of taking vitamins?
Of course, there are many people who have died from a lack of vitamins. (My step-dad is one of those poor victims of a health system that was deficient in nutritional training)
Please get your self well.
Thank you for your post.
I see from another post you are taking NDT. Does your Mum also have a Thyroid problem ? You mentioned she is taking Statins and it does mention on the NHS website that before taking a Statin the thyroid should be well treated -= or words to that effect ! Long before Thyroid testing began in the 70's - anyone with raised cholesterol had their thyroids treated. Guess all those Docs who went by symptoms are no longer with us - sadly ...
Hi Marz, yes I do believe she is hypo , as well a B12 deficient. Plus she is type 2 diabetic on insulin. I have tried speaking with her doctors but to no avail. I think I intimidated one young junior doc on his gp placement as I showed, using the evidence of all her past blood tests, that all the drugs she was on was not making one jot of difference to her blood levels, plus could well be responsible for a lot of her symptoms / side effects and told him it was well documented that hypothyroidism can elevate cholesterol levels. He meekly said people don’t need to take the tablets prescribed. Another occasion I visited the diabetic nurse with my mum. I wanted her to help mum go on low carb diet. She said to my mum, “it does not matter what you eat or how much you weigh, “ then turned around to me and told me with a big grin on her face that I will become diabetic too. I was hopping mad at this . The problem is I live abroad and my mum lives alone and even sometimes forget to take her insulin. Plus she is addicted to sugar. I am very happy she forgets the other stuff though. I do send her vits etc which she sometimes remembers . I would love to start her on NDT but with all the blood tests she gets, I am sure the doctors would have a fit 🥴 so I am a bit stuck there. She does take B12 SL though and that helps.
Oh Dear - poor you - that is so difficult. Am quite passionate about Mums - mine died 20 years ago and was an un-diagnosed Hypo. I did not know so much then ! At menopause she had horrid hair thinning - the GP told her to buy a wig and that they were now very nice ! Mum worked in Fashion ! She then had an irregular heartbeat which the GP suggested was early heart issues/angina and gave her pills - which she took to the end of her days. Tomorrow is her 100'th Birthday - how I miss her. She was a lifelong WW member too and so struggled with keeping her weight down.
I had my youngest daughter tested and scanned in Crete - scan revealed a suspicious node. Back in the UK her GP refused to look at the beautifully printed out Thyroid Test results - including TSH - FT4 - FT3 and the Anti-bodies TPO & Tg. He did the usual TSH test twice and declared her normal - apparently it was all in her head. We persuaded her to go privately and a FNA revealed she had thyroid cancer. Of course it had to be removed - RAI followed as did further cancers in her leg. I often wonder if she had been attended to more speedily ... Currently she is doing well with a good career and of course a PMA - Positive Mental Attitiude !
I despair at times !
I think sometimes, the only way to make change is if people sue their doctors. Until they start having to really answer for what they do/don't do, things won't improve.
Having said that I know how difficult the NHS make the complaints system, having made a serious complaint about the appalling treatment my dad received from the district nurses in his last few months. I personally think they should have been struck off.
When I see something is wrong, I always say so. Guess that's why I ended up running a dyslexia parent support group for many years and do the safeguarding for church. Doesn't help my stress levels though.
What an exemplary response, erudite in the extreme and expressed with such passion and clarity. Every word touched me, spoke to my heart and made me feel less alone in the struggle. Thank you so much for taking the time.
Every best wish.
Did you actually just post this to provoke controversy among the members I feel “sad” for you if you did.
This is your post from One year ago if you’ve been nursing for 46 years then this would make you at least 60 years old when you posted previously I’m amazed with the content of you previous post then.
B12 level was 152 then 2 weeks later 107 8 months pregnant then GP said readings satisfactory don’t need injection - my understanding is low B12 in pregnancy is potential problem for baby - am I right to insist I have it thanks
You then decided well it was actually your daughter you were referring to si I’d advise anyone to read your previous postings and replies before giving you the time of day.
My B12 level of over 2000 ng/L doesn't give me a high. It stops me getting worse.
It allows me to work, although not in my original post and not full-time.
It allows me to walk without having to think about it.
It enables me to understand, most of the time, what people are saying to me.
It stops me getting confused, angry and impatient, lost.
My GP has helped me to get this far. When the usual treatment failed to help me, she ensured the nurses gave me 2 injections a week for six months- although they weren't happy to follow these instructions. I think she saved my life then.
I'd really like my old life back. I'd really like a day without any symptoms.
Not after a high.
My Daughters is 2000 so what that means nothing. Most GPs need educating its shameful how patients with B12 deficiency have been treated and still are. If a number of GPs had treated my daughter correctly over the years she wouldnt be in a wheelchair with Subacute Combined degeneration of the Spinal Cord. Please do show information where it says B12 is Addictive.
I'm also a former senior nurse.
I have friends who are GP's, hospital doctors, close relatives who are senior hospital Consultants, but I know ignorance and arrogance in medical staff when I see it.
Have just received a reply from the Medical Director of my local health board to my complaint regarding access to B12 Injections during the pandemic.
A more passive- aggressive document, littered with inaccurate, blatantly incorrect information you couldn't hope to find.
I stand by the view that a majority of GP's and those who advise them have completely neglected the care of PA patients .
Well said Ghound 👏👏.
I am so pleased that you - and so many others - took your time to eloquently reply to this post. I read it this morning and felt all the kicks and feelings of implied worthlessness that I have experienced at the hands of poor medical professionals over the years and felt truly sickened by it so seeing people's responses tonight has been a balm to my soul.
To provide balance to my above commitment about poor treatment, I also have friends and family who work in the NHS who are beyond brilliant and who stand alongside the wonderful people who HAVE cared for me when I have needed it, whom I am the first to thank.
It is a kick in the teeth Denise your right.When I first moved here last year I was too scared and Ill to face going to a new gp because of the poor treatment I’d had from a number of gps,one I made an official complaint about and moved practices because of,
Id had a bad head injury and a year later I was still struggling to walk my eye was awful on the side I’d been injured on and I had recurring flashbacks of slamming down on the concrete every time I closed my eyes,I went and begged her to help me,she said t me so you have a big dent in your forehead but the wound has healed so what do you expect me to do and laughed,I pleaded through tears please send me to a physio which she grudgingly did and said Go Now out,it turned out I’d had a brain injury the physio was horrified I’d double whiplash I had to be retrained to walk properly to step over things to catch things etc I could do none of these things.I was advised to complain I did and moved practice and Christ did she not move there as a locum lol.I nearly had a heart attack when I found out I was booked in with her.It has all left me so phobic of gps but as I’ve said previously the new one is really nice he’s the head partner too so I’m not above complimenting and giving credit where’s it’s due and to be slated as patients by someone in the profession is just typical of poor practice and I can’t see how anyone would support that post.
Oh goodness me, poor you! How terrible! Our catalogue of dreadful things couldn't happen if all was good, and we are the first to give credit wherever it is due.
I so hope you can recover. Time is a great healer, alongside appropriate treatment and I wish you well ASAP.
Best wishes, Denise
Thank YOU Denise ! So kind , but a huge thanks to everyone who contributes here, especially you and all the other "regulars" without whom the B12 journey would be a dark and lonely one.
The support given by this forum is incredible !
Thanks again all of you !! xx
You put everything so perfectly and I learnt a lesson in recognising that my feelings are valid (despite numerous knocks over the years from various, but by no means all, unkind health professionals) and just calmly replying with the simple truth.
Best wishes to you! x
With B12 there are no NICE guidelines. So no excuse there.
Many moans are that GPs do not follow the guidelines in the BNF (they insist that treatment can only be every three months).
GPs do not even have to follow the guidelines in the BNF. They are free to prescribe B12 outwith the terms of the license. There is nothing at all to stop a GP prescribing B12 injections once every two weeks (which is what mine did) as long as they believe it will be beneficial to the patient and is safe.
I'll be the first to jump to a doctor's defense when their being unfairly slated. I'll also be the first to call them an idiot when they act like an idiot.
Here is a great example of idiot healthcare staff - healthunlocked.com/pasoc/po...
A nurse who says that PA is caused by a 'hectic lifestyle'.
A doctor who says that he is only allowed to prescribe injections every three months.
First question: How can you have had PA? It can only be treated not cured.
Second question: Where did you get your information that it is addictive? I have never seen any proof supporting this view.
Third question: Did it give you 24 hours of wellbeing? You seem to be saying people want it because it gives them a high, if it does this then I've never experienced it.
I am striving to feel as well as I can, after being ill for a long time I think it is quite normal to want a simple vitamin injection as frequently as I need it to recover from the effects of being deficient and then to maintain my health.
Many doctors (and nurses) obviously don't have enough knowledge of PA, most have never received the training they need to understand vitamin deficiencies. To be so dismissive of their patients suffering is therefore inexcusable!
"First do no harm" comes to mind, whatever happened!
Frenchiebabe...in response to your now (I think deleted) reply...
'You have just done what I made my statements for - the nurses & dr are not dismissive as you suggest - or do you have a reason to state we are excusable - We do our job for reason - but I guess you believe pts are always right'
If you take time to read through this forum and also engage with the excellent points made in this thread, you will perhaps understand that many people are NOT lucky enough to be blessed with doctors or nurses who understand pernicious anaemia and/or B12 deficiency or offer appropriate treatment (in line with current guidelines)...or indeed, in many cases...any treatment at all!
As others have pointed out so very well here, many remain undiagnosed, are misdiagnosed (anxiety, depression, CFS, ME...the list is endless), some are denigrated and in the worst cases, treated with hostility (I speak from experience here). Some suffer subacute degeneration of the spinal cord...some have been sectioned for mental health issues...all for the want of adequate treatment with vitamin B12.
This is precisely why people end up in fora like these - people who are well treated (in all the senses) have no need to search for fora like these. And if you look through the entire HU platform, you will find many similar stories of people being let down by their GP's (i.e. thyroid UK and lupus UK fora).
If you look hard enough, you will also note that where members receive good or excellent treatment from their medical teams, this is also reported...and celebrated by all! Good medics are worth their weight in gold! We celebrate them. Always.
I'm sorry that you’re sad and appear angry that people are ‘ blaming their GP's' for the poor treatment they receive. Well...who precisely is one to blame for treatment (or lack thereof) that borders on medical negligence? And results in at best extremely poor quality of life and at worst permanent neurological damage...even unto death (it's called pernicious for a reason).
I'm sorry but your stick your head in the sand approach to these issues, your apparent lack of knowledge and understanding about PA / B12 deficiency and it's treatment, and your attempt to present ALL GP's and Nurses as being above reproach is an endemic part of the problem! It is precisely why we patients are often treated so appallingly...to the extent that some have to take along a witness to medical consultations (I know you won't like me saying that but it really does improve the behaviours of many medics...and nurses...and serves as a small measure of protection for those who have a right to expect better). Even more shocking, many women report that they are only listened too and taken seriously if (or when, eventually - in desperation) they take along a male to validate their own medical 'stories'!
You suggest that there is a belief here that patients are always right - so it seems strange that you appear to believe that doctors and nurses are always right?
Having spent 46 years as a nurse, I'm surprised that you have been unable to deduce that there are good and bad...in any profession...and that the medical profession is no exception!
As an ex-nurse I am well aware that there are excellent doctors, mediocre doctors, kindly doctors, bad doctors, negligent doctors...and doctors who are true shining stars...and there's a similar spectrum of behaviours in the nursing profession.
Please can I suggest that you look up the terms ‘gaslighting' and 'medical gaslighting'...unfortunately and disgracefully alive and well in all areas of medical and nursing practice. Or read the report of the Francis Inquiry (failings in care - Mid Staffordshire NHS Trust Foundation - published 6 February 2013):
Finally, I'm sorry if you think this all a little blunt...but I've been at the sharp end of this particular stick and have spent several years reading daily of far too many in a similar (or worse) position.
Yes...there are some excellent doctors out there. And we celebrate them. But please remember it's not how hard anyone works that matters...it's outcomes that matter. In this case, outcomes for the patient. And for far too many, the outcomes are...well...unspeakably dire!!
Not so much 'Foggyme ' but 'MentallyAstuteme!'
No brain fog there! Unbiased, well rounded response.
What incredible people are on this forum.
A forum that I am sure reduces the chances of a dire outcome for many.
Fantastic reply, thank you!
The quality of your text just shows how much you have improved since you have taken the steps to look after yourself when your Drs and medical staff were being negligent and making you suffer as a result.
That is testament enough for me but it is repeated here many, many times over. Some people don't regularly contribute on this forum any more because, once freed from the constraints of ill health that they were being subjected by their health professionals, they are too busy enjoying a quality of life that had been denied to them by the people who were being paid well for abusing their position of power!