We talk a lot about the vast number of people who have been misdiagnosed, who went on to self treat, and subsequently improved their health, and their quality of life. But what about those who have received a diagnosis, and accepted it?? My GP at the time of my B12 crash wanted to diagnose me with Fibromyalgia. I would not accept this diagnosis and pushed for a trial of B12 injections. These were a life saver!! However, so many people have a diagnosis of fibromyalgia, ME/CFS, MS, Parkinsons, depression, anxiety, other mental health problems, ADHD, Autism.......the list goes on, and I wonder how many of these are actually B12 deficient. I'm not saying every illness, and every symptom, can be blamed on B12d, but the lack of proper testing and treatment of B12d leads me to think that a large number of these patients would really benefit from supplementing B12 but are left to suffer. This makes me angry, and sad.......
I've been thinking a lot about people... - Pernicious Anaemi...
I've been thinking a lot about people's misdiagnoses........
Yes, BeachArt
Misdiagnosis is rampant. There are many diagnosis that are made simply to move the patient along, prescribe a med, and be done with them.
CFS/ME, Fibromyalgia, depression, are all fake diagnosis in my opinion.
Yes, I have chronic fatigue, let's just label it as CFS now we have a diagnostic code we can record and I can move on to the next patient. These diagnosis are but rather symptoms, yes, including depression. To be clear depression is real, it is ugly but much can be related to hormone imbalance or truly hormone deficiency. Not to mention the role of B12 can play in that.
I had been diagnosed with chronic fatigue, chronic bronchitis, Transient Ischemic Attack (TIA) and it turns out they were all related to severe B12 deficiency. TIA btw, after MRI and MRA of brain showed nothing they diagnose with TIA and that simply means, in doctor jargon "we don't know what the heck happened" But I had to do the research, ask my doc to order the tests and those subsequently confirmed PA.
Just beware of a diagnosis that is simply a shorthand of your symptoms.
Rexz
We have both forgot to mention as the years have ticked by it's now put down to....... age. 🧓
What the firk is that all about ? 🤬
Soz cant do short hand but how right you are.
It makes me sad too.
Over the years I have been diagnosed with M.E, Chronic Fatigue, Fibro Myalgia. I lost count of how many times I were told to pace myself. My haematologist due to my platelets dropping prescribed me folic acid. I can only assume this masked my B12 deficiency. The latest insult was when my Gp sent me to a neurologist for my neuropathy who tried to label me with FND.......yet another illness they have no test for !
The fact of the matter is I actually have various complicated autoimmune conditions not all Drs and consultants understand. Instead of reading up and learning about such conditions it's easier to label such as with FND........idle Drs and consultants that slap a label on and simply push you out the door because they would rather not admit their ignorance with such conditions that are outside of their field.
Due to my insistance on being seen by a gastrologist I am now diagnosed with an absorbtion issue and Crohn's.......this would perhaps explain my diagnosis of being malnourished and my ongoing symptoms !
It makes me and other's very angry to look back over those lost years.
Sounds a bit like my story. Multiple autoimmune diseases called Polyglandular Autoimmune Syndrome (PAS).
I asked my GP for a referral to a gastroenterologist as I am also not absorbing anything and getting toilet problems! B12 & folate deficient! My Gp said sounds like CFS! So reluctant to prescribe B12 injections 😧I rang booking office and there maybe a 15 month wait!
Its like flogging a dead 🐎
Isn't it strange how they can diagnose CFS but cant get their stupid heads around a B12 deficiency ? Is your Gp aware of the new guidelines?If you have symptoms they should treat !
It was a year and a half before I were seen in gastrology ! It took months to do the various scans, gastroscopy and a colonoscopy. Once it was all completed I was diagnosed with a hiatus hernia which I knew of, errosive gastritis and crohns.......the insult is they have seen something they cant identify but his letter states he will see me in two months ? ? ? The consultant wants to do a capsule swollow to take a closer look but as yet hasn't arranged it !
I've been given no treatment or dietary advice.
I do hope you can push this forward but you have to be insistent.
Thank you Jillymo yes she’s aware of former guidelines as I have told her! Another GP I spoke to wrote in my notes I quote ‘she read something off the internet’ no! They are NICE guidlines 🙈🙈🙈🙈🙈🙈..
Many years ago I had a gastric band and they repaired a hiatus hernia I had! (Luckily) so it may be the band contributing to lack of absorption too? But that’s what I want them to find out? 🤩
Hi Doris,
I left a detailed reply on this thread that might be useful.
Help Needed! Have I got Pernicious Anaemia?
healthunlocked.com/pasoc/po...
Has your GP seen new NICE B12 deficiency guideline published on March 6th 2024?
Worth reading it yourself as it's likely to influence treatment across UK.
Try to find local B12 deficiency guideline used by your ICB (Integrated Care Board) in England (Health Board in Wales/Scotland). Keep an eye on local B12 deficiency guideline..they are likely to change soon due to new NICE guideline.
Sleepybunny No I’d like to send her a copy but don’t know how to do it electronically? I’ve found the ICB from where I live and found the info on prescribing B12/ folate?
Are you able to email your GP? Not many GP surgeries allow this. Maybe ring them and ask if this is possible.
Might be worth writing a physical letter to GP mentioning the guideline (use exact title of guideline). Consider including quotes from it. Keep copies of any communication. See link below.
b12info.com/writing-to-your...
Search for "name of ICB B12 deficiency treatment algorithm" or "name of ICB management B12 deficiency" to find local B12 deficiency guideline. Search forum posts for "local B12 deficiency guidelines". Best bet is to submit a FOI (Freedom of Information) request to ICB asking which B12 deficiency guidelines they are using and for a link to or copy of them. Try to get exact title of document.
Might be worth starting a new forum thread about this.
I cannot understand why emails aren't used by much of the NHS. I know some are worried about security yet thats not difficult to solve at all - its so old fashioned.
Don't wait that long for B12. I had toilet issues too so bad I sometimes was concerned about going out in public. B12 cured it. 15 months is too long to keep going downhill. Taking a 1000mcg supplement daily (sublingual) works for some people. But many require B12 shots.
Thank you for your reply I currently take Vit B complex + Jarrow B12 + folate.
How much B12 is in it? The recommended daily requirement is 2.4 mcg. Typical multi-vitamins may have only a little bit more than that. My multi-vitamin that I take has 3 mcg. The problem is that people with PA are only absorbing only a very tiny fraction of the B12. Someone with PA needs to take at least 1000 mcg daily since they might only be absorbing less than 1% of it. Some people with PA do not absorb enough even from 1000 mcg per day (including many people on this forum) and they need regular B12 injections.
This is me. I accepted my ME/CFS diagnosis 8 years ago and subsequently had no treatment in that time. It was a random blood test that showed my B12D and iron deficiency in late December 23 that led me to seek private treatment.
In terms of what happens, well it’s been hell and on some occasions I’ve thought of nothing but ending it all.. a steady decline over the years leading to me being bedbound or using a wheelchair (painfully) on the rare does I went out. I felt like I was dragging a decaying corpse around.
It happened at a bad time for me, when I was finishing my A Levels as a pretty healthy 17 year old. Now I’m 26 and looking back at all that I lost.. I won’t go into what doctors put me through, or how hard it is to realise because of B12D I don’t know who I am as a person or what to make of myself.
The medical profession took my life from me and the online B12D community and a private specialist has given it back. Of course along with the miracle that is Hydroxycobalamin!
I can relate to the dragging of a corpse around. I cant tell if its decaying or not but would guess so after all these years.
Drs act like gods but in reality they know very little other than the basics. I am now 72 and in all those years only one Gp admitted he knew nothing about one of my conditions. Give credit where due he told me it was his duty as my Dr to learn about it !
I am pleased to hear you have found stability so that you can now move forward and enjoy life.
Im late 80s got married 1955 and started severe stomach pains which Dr said stress still living at home, in 58 it was moving house and on and on till 1963 got proper diagnosis of gall bladder which contained a jar full of gallstones !!!! And it's gone on ever since in that vein. Arguing with a consultant who's said I'd Angina...wrong another 10 yrs of frustration. Until A LOCUM recommended tests and my heart was fine so over 20 yrs of fighting with medical professionals and all along I've come to realise that it was B12D so many years of my life wasted as Mother brought me up saying "Doctors know best"
BeachArt has raised a very good topic.
So many of us have been left to needlessly suffer due to ignorance of the condition and that ignorance carrys on even today. Patients who have thyroid conditions, gastritis, autoimmune conditions or relatives that are diagnosed with a B12 deficiency are not being considered as candidates for PA ! 🤔
Like BeachArt I feel angry and sad when I hear other's stories of how they have relentlessly suffered over many years..
"well it’s been hell"
I can relate to the feelings you've expressed. I lost many years of my life to this and probably have mild PTSD symptoms over the way I was treated by medical profession.
ME/CFS is a diagnosis of exclusion meaning that it shouldn't be diagnosed until every other possible diagnosis has been excluded.
For many years I think the NICE guideline for ME/CFS said that B12 tests should not be done routinely for people with ME/CFS.
These guidelines were updated a few years ago.
Section 1.2.3 mentions B12.
ME Association has articles about NICE guidelines ME/CFS on its website.
I relate to the mild PTSD symptoms, I’m still getting my head around everything but I feel like I have really been changed as a person from going through this, some good ways and some bad ways. I definitely fear a lot of things I didn’t before. I remember that the PA society was involved with the new ME NICE guidance and how good it is that it’s been changed. Ironically when it happened, I thought to myself that could never be me! And here I am 
Sleepybunny - Funny just the other day I was thinking I probably have some PTSD caused by the lack of most doctors (GI, hematologist, Primary Care & Neurologist) wanting to educate themselves on this condition (literature is out there) . I think I have finally found one, time will tell.
The medical profession are having to do what an austerity loving government insist they do. All the problems you had are because of unnecessary austerity & political control of the NHS,
Not necessarily - many people on here have been misdiagnosed, fobbed off or ignored for decades. Sometimes due to the arrogance and/or ignorance of some members of the medical profession.
The medics have had to do that because the government insisted they saved money - no other reason.
Bellabab.....the government could save millions if doctors had the knowledge and understanding of PA/B12d, and diagnosed patients quickly, and provided them with effective treatment.
Well, it seems a lot of GPs are still keen enough to waste money on anti-depressants, statins, PPIs etc often for people who don't need them, but who do need their symptoms investigating properly. I think GP practices (private businesses) are more under the control of big pharma's money than they are of any government.
It was years ago but I was tried on several antidepressants and none of them worked.
When I finally got B12 my mood started to improve.
The depression I had was reactive depression. My mood was low mainly due to frustration. I was desperate to do so many things and have a normal life and wasn't able to. I certainly didn't want to spend many days sleeping on the sofa.
The health professionals thought I wasn't doing things due to depression and I kept trying to say I was depressed because I couldn't do things. They didn't get it.
Later depression was due to the way I was treated by health professionals and a lack of support from some of the people around me.
I often think of all the money that was wasted on neuro appointments and appts with other specialists and on antidepressants and other drugs to relieve pain when my body was crying out for B12.
I totally agree Tanglewooddream: misdiagnosed, fobbed off, ignored, neglected, forgotten, abandoned.....and mostly due to lack of understanding and knowledge, and not being willing to seek that understanding and knowledge. No GP can know everything about everything, but so many will use the 'I know better than you' stance, and will not entertain the notion of seeking out some understanding of something they deemed to be 'a simple vitamin deficiency'. Yet they give out diagnoses of things that have no diagnostic test, and send a patient on their merry way, to suffer in silence. It makes my blood boil!!!
Such a young age to be messed around . . . . So many practitioner's as so stubborn or worse. . . . . Glad to read you've made it to the other side . . . . . Happy Hydroxo . . . .
I'm envious Rexz I havn't got that one but there's time yet !
Got most of the other's though which I find great when playing scrabble......... hypoparathyroidism & antiphospholipid syndrome.......lets see how many words we can make out of those ? 🤔
If your missing a J we can throw Sjogrens in for good measure.
Gee Jillymo so many letters! Why can't they just name them Jim, or Billy, or Sue? Would make things so much easier!! 😂
Btw Jillymo I have Sjogren's too...YAY! 🎉
Snap, I know you do ! I also listened to your very interesting biography.
Despite your ailments you lived.
Sjogrens is a bitch to live with I have a flare up of it as we speak. 😭
Thank you. My bio is probably not much different than many on this forum. We all just press ahead right? 😊🙏Sorry your Sjogren's is flaring. Mine mostly presents as chronic cough. One of my very first misdiagnosis, as BeachArt post suggest, was Bronchitis. Everytime it would flare I'd get another diagnosis of bronchitis? That went on for four years. Then I finally suggested they test for Sjogren antibodies.
I dont know about press on i'm still carrying the corpse around AJackson21 spoke of.
I tend to wheeze a lot on awaking, also dry eyes, mouth & skin, god knows what its doing to my insides.....but as you say we carry on.
Do you take anything to help with the dry mouth ? I find xylimelts to be good. We must be strong in body and soul to put up with all this crap. I find the sjogrens is second to none with regard to the lethargy, I can sleep hour after hour during a flare. 🛌 😴
Just had a thought maybe its my M.E, Chronic Fatigue Syndrome or Fibromyalgia.......or at the worst my FND ? I doubt very much if its my various autoimmune conditions making me feel like 💩.
Drink a glass of water the minute you get up. . . . . Go to the loo etc. . . . . Another before ye eat anything and another every time you eat. . . . . . Even before tea/coffee and bisquit. . . . . . Just dont consume anything without a glass of water first. . . . . At least 200ml. . . . Most of us are dehydrated. . . . .The cup of tea or coffee does little to hydrate anyone. . . . . Try it see after 2 weeks if it helps. . . . . . It takes all the 200ml to get us enough fluids every day. . . . . . If you can manage 5 glasses you doing okay but aim for more. . . . .
Every time I get up to go to the loo which can be three, four times a night I have a drink.......if I consume anymore I will have an accident on the floor. 🌊......sorry I couldn't find a puddle.
I will try drinking a class of water before food as you suggest. 👍 Coconut water is also supposed to be good for hydration. I've been adding a little tonic water because of gout ( no gin ) but although it helps with the gout not so sure it helps with my other issues !
Yes try drinking water before everything. . . . . . Drinking at night I am not so sure about. . . . . There is nothing to beat water rather than any juices,minerls.pop etc . . . . . And before everything is usually on a fairly empty stomach and right into wherever it needs to be. . . . . . .
I have to drink at night to wet my mouth because of the Sjogrens but will stick to water in future.......On an empty stomach. ☹
Is that my belly I can hear grummbling ? 👂
I'm not really a drinker of fizzy pop but did get some ginger beer in the hope it would help with the inflammation which is running riot at the moment........ Have faith in me I will do as you suggest.........water it is. 😝
I don't take anything for dry mouth or dry eyes. My Sjogren's has manifested more in a dry cough. I am told dry eyes may come at some point and then I will apply eye drops. Like OldmanD suggest I drink plenty of water. I recently finished a trial of Prednisone, an immunosuppressant that I'm not to thrilled about. That treatment made me very moody.
I think you're right though, we're all dragging around a corpse of our previous selves. Mine is beginning to smell! 🫢
I've also noticed the smell. 😷 Not sure if it's the corpse or me ! 🤔
I am prescribed Hydroxychloroquine but ho boy if given the generic that sure can upset the bowel. I now insist I am only prescribed the Zentiva or Black Rock brand. I have never been offered Prednisone but could do with it my joints are agony....... cortisone injections into the joints on Friday which I cant say I am looking forward to. 😱 I had one years ago in my teens but never went back for the second jab........ I am no hero.
There is nothing worse than moody man syndrome.. 😤 Glade to hear your no longer taking the wretched things.
I know, some of the things you say while on that drug, as you snap at people surprised and astounded me. I had to apologize a lot even I did not know where it came from. It's like you become a Dr Jekyll and Mr Hyde! At least my doc forewarned us so my wife, at least was a good sport!
Thank you BeachArt. You are very thoughtful for thinking and writing about others.
I am pleased to read that B12 injections were a life saver for you.
Yesterday, I was keeping some of my emergency skills up to date - performing CPR is also a life saver. 😉
Narwhal10.....you are right. CPR is kind of a big life saver too 😉 Good on you!!
You simply cannot do CPR, if you are bed bound with PA/B12D and cannot coordinate your own body. At that time, one of my mates had to become my carer. They would find me and my bed covered in popcorn because hand to mouth coordination was affected. They would try and clean up, I would joke, Oi, I am saving that for later.
One doctor looked absolutely mortified when I said how great a particular doctor was and other wonder drugs which have caused horrific disabilities. They simply do not know us as people. Our accomplishments, our achievements, our goals and purpose.
😘
ANd CPR has changed over the years . . . . . I a not fit for refresher just yet but if someone was in bad shape and everyone standng around I'd give it a go and hope someone fitter would arrive . . . . . I think I done 4 refreshers with ST John Ambulance over the years but it been 15 years now I am sure.. . . .
The most important thing is recognising that someone is in bad shape and doing something.
Not standing about just watching and filming on phones. Like BeachArt says how many of us have been misdiagnosed ? How many of us are aware of those who live in our town or city and we pass in the street are struggling to walk or are in wheelchairs ? A friendly smile, a quick hello, a nice to see you getting out and about turns into them disclosing they have M.E., fibromyalgia, M.S. which prompts me to ask, Have you had your vitamin B12 checked ? Oh you had injections but now you are cured. 🙄
I speak to anyone and everyone who has eye contact with no odds colour or creed. . . . Some take it as quite a surprise but locals usually speak back, . . . . . It brightens people day. . . . . . Grumphing as we call it is no use. . . . . . The west/mid west is a pretty friendly place unlike where we came from where unfortunatly ye are liable to get a grunt instead of words. . . . . I had to put myslef in action one day a little little on buggy ran across the road in front of us getting tangled up in the foot peg of a motorbike . . . . . We could see her head bounce off the road several times .. . . She had stopped breathing but had a pulse . . . . . It only took 2 or maybe 3 minutes and she recovered her breathing. . . . . I never seen as ungrateful parents. . . . . . We went to see the wee girl in antrim area and were barely made welcome let alont thanked. . . . . They just yapped on about the road being dangerous . . . . . No road is safe for 2 children and a home made cart/buggy thingy. . . . . The biker was not at faulyt at all. . . . . He wasnt speeding and slowed right down but the wee girl ran right into the side of his machine and he stopped within meters. . . . But I look back and I'd do it all again. . . . .
Hi,
Not a week go by without me suggesting someone gets their B12 checked.
Someone living close by told me recently they had had memory tests results that suggested dementia. I suggested they got their B12 checked and also mentioned it to two other family members.... sadly I don't think they took me seriously.
I do the same thing. My friends and family just roll their eyes when they hear me get up on my B12 soapbox. I buy copies of the book, Could It Be B12?, and leave it places like doctor's offices and little libraries. Because of my constant hounding, four people, including my daughter and sister, are now receiving B12 shots and are feeling great. I don't mind being annoying if it will help someone.
I've left copies in UK old red telephone boxes that are used for second hand books.
Could it be B12? and Martyn Hooper's book "What you need to know about Pernicious Anaemia and Vitamin B12 deficiency" are the ones I've left.
I haven't read Martyn Hooper's book. I'll have to do that soon.
Soneone I know is currently having tests and has been told they have age related brain shrinkage. Other symptoms are poor memory, shuffling gait, loss of balance…I mentioned having a b12 test but the strange thing is that many people don’t seem open to the idea of vitamin deficiency - seemingly happy to undergo any no of tests and scans while rejecting investigation of the basics.
I also do this: suggest people get their B12 levels check, or advise those who have, (and been told it's normal), of the complexities of vitamin B12. Sadly it falls on deaf ears most of the time. I've had people say 'my doctor says my level is fine so it can't be that', and 'I don't have a vitamin deficiency, I have fibromyalgia/CFS/FND etc'. Too many people take their doctors word as gospel, and accept the diagnosis they are given. I have advised so many people about B12 deficiency, but I don't think any of them followed it up, which is sad.
"Too many people take their doctors word as gospel, and accept the diagnosis they are given"
I agree with your comment. I only started to get answers when I started to disagree with the GPs and researched things for myself.
It should rad .. . . . . . any no of tests and scams. . . . . . . .
Well yes precisely. 😄
I say, Oh have you been checked for Pernicious Anaemia, it is similar to Multiple Sclerosis ? (That sticks in people’s minds and people know it is serious). Then I say, First, you need your B12 checked. People assume there is going to be a whole lot of more tests because of that one word I started the sentence with.
😉
Yes that does have more gravitas than a ‘mere’ vitamin deficiency
Hi,
"but the lack of proper testing and treatment of B12d leads me to think that a large number of these patients would really benefit from supplementing B12 but are left to suffer. This makes me angry, and sad"
Me too, BeachArt.
This is why I'm so active on the forum. I can't bear to think about others suffering like I did.
And we love you for that Sleepybunny...❤️
I remember my wife shortly after I was diagnosed and I found Sally Pachalok movie. . . . Wifey was actually angry at the antics and not long after I played her the BBC Dr Chandy report to which she took to being red again. . . . She glows at times. . . . . Mind I had been off work since May 2011 and had a crash in my 40s and never got any answers yet when she watched the movie and Dr Chandy it all stood out so plain to her. . . . . .She was ready for taking them to court she was so mad. . . . . . But yes. . . . . as we'd say. . . . . . It'd make ye mad. . . . . . I would however really like if people could make a choice or two when confronted with the useless NHS. . . . . .I know it cannot be easy but it is life saving and with recent research dementia and other neuro complaints become closer linked your health onto the future can really be effected by delaying. . . . . . For the most part the amount of times spent seeking appointments and trying to fight with a dieing system where there simply is not funds nor time to give good service. . . . . . . NICE guidelines are fine but as can be seen already the GP's have the loophole already sorted so no change there even if they had the funds and the time which they often dont have . . . . . . For those who are not diagnosed and suspecting they are sufferers they would be better source out any private clinic, anywhere really who will administer a few jabs for them. . . . . Years ago that was the main way of diagnosis. . .. . Give them a few jabs and see if they improve . . . . If they improve then one every 3 months .. . . . . There was no messing about with bloods etc . . . . . . And it worked perfectly well . . . . The bloods have in my eyes been used to get in the way of treatment. . . . . . My GP done it all for me none of this running here and thwere begging. . . . . . I done all that in NHS land and got told nothing wrong with your depressed and god knows. . . . . I look back and there is no doubt if B12 works you will know about it. . . . . It just seems like such a waste of time and health fighting your corner against a foe who you will not beat but rather have to beat them into submission . . . Beating anyone or anything into submission takes quite some time by many of the stories I read here . . . . People are so happy to get their due care but often are proud they beat the system. . . . . . It was not worth it the time it took. . . . . . This B12 is a much more serious thing than many are realising. . . . . . Health is not worth that caper of digging your heels for months at minimum or worse years . . . . . I was not lucky in NHS land but had not a clue about B12 and had never heard of such problems . . . . All this PAS is newer than my problems. . . . But moving here I was really lucky and got diagnosed. . . . . Cut a long story short, I am Irish of a certain age and have a medial card so free health care . . . . I would be entitled to a jab every month but I dont ask for such.. . . . . I am not wealthy by any stretch. . . Beside what I left behind this care is so good that I get the 3 month jab to tick the boxes and DIY after that. . . . . . Cyano which there is nothing wrong with especially if ye cant get NHS jabs as often as ye need them and are short on funds is a little over 50c per 1000ug ampoule and if you really insist on hydroxo it is can vary from 70c to a euro per ampoule. . . . . Any of them are better than none so I dont know why so many will not accept anything but hydroxo and will wait or have their family wait months on never never . . . . . A syringe and needle will be below a euro so two euro max per DIY jab. .. . . This woiuld not take mist people to the GP clinic. . . . . . You do have to invest a little though as the smallist amounts are 10s and 10s are dear. . . . . . . Back to myslef again. . . . . As soon as I realised that I'd needed more than the usual I didnt torment my saviours but went about sourcing my own kit. . . . . I bought Cyano first. . . . . Wifey went bonkers and bought every known oral and sublingual you name it lame duck B12 stuff but none were anything like a jab. . .. The rest is history. . . . . . I hop this spurs someone, anyone on. . . . . .
Hi,
I thougt these articles might help to explain why forum members can struggle to get a diagnosis of b12 deficiency/PA.
Link about misdiagnoses of B12 deficiency
Misconceptions about a B12 deficiency
(The conclusion mentions common misdiagnoses)
stichtingb12tekort.nl/engli...
Diagnosis and treatment pitfalls
b12-institute.nl/en/diagnos...
Mayo Clinic article
pubmed.ncbi.nlm.nih.gov/311...
The Many Faces of Cobalamin (Vitamin B12) Deficiency
Bruce H R Wolffenbuttel 1, Hanneke J C M Wouters 1 2, M Rebecca Heiner-Fokkema 3, Melanie M van der Klauw 1
Affiliations expand
PMID: 31193945 PMCID: PMC6543499 DOI: 10.1016/j.mayocpiqo.2019.03.002
Free PMC article
Table 1 in above article mentions common misconceptions about B12 deficiency.
PAS article - Only One Chance by B. Wolffenbuttel
pernicious-anaemia-society....
He also wrote a recent BMJ article
bmj.com/content/383/bmj-202...
Vitamin B12
BMJ 2023; 383 doi: doi.org/10.1136/bmj-2022-07... (Published 20 November 2023)
Cite this as: BMJ 2023;383:e071725
Bruce HR Wolffenbuttel, professor of endocrinology and metabolism (Em)1, P Julian Owen, consultant orthopaedic surgeon2, Mary Ward, professor of nutrition and dietetics3, Ralph Green, professor of medicine and pathology (haematology)4
This article has some interesting responses from researchers and health professionals. See Responses tab.
What makes me cross is the deliberate gaslighting of patients just to keep numbers down on their lists.
Like yourself..... I read, I have listened to so many stories of misdiagnosis.
My ❤ goes out to them all.
They wanted to hang Fibromyaliga on me I think it was late 90s. . . . . I made a kinda recovery and worked from 2005 to 2011 and crashed again. . . . . Little to no help in the NHS system because by 2011 more or less NHS in NI had collapsed as england etc is beginning to do now. . . . We moved out of the UK 2018. . . . . Dont ever want to go back. . . . . . Sorry guys . . . . shit hole. . . . . I got diagnosed and first treated during the 1st 2nd covid outbreaks whenever that was. . . . . . The rest is history. . . . . . And a bit of DIY experimenting. . . . . . I wish I had told my new GP here my symptoms earlier but once ye learn to shut up as no one listens its hard to break the cycle . . . . . . After a few visits I realised things were differnt here. . . . . Different attitude.. . . . wont be like that countrywide as some areas are growing faster than any system can keep up with. . . . . . We just hit it lucky. . . . . . We dont like city kinda places anyhow . . . . . None of those near here. . . . .
Good for you getting out of this wretched corrupt place...... Albeit broke my heart when my son did the same 4yrs ago with the intention of taking me with him. My health put pay to that idea.
He now gets good health care in a country others assume to be poor ! To get up to your own spacious land, mountains, fresh air ect has to be a bonus.
And how many people don't even get a diagnosis of any kind. Just told that that it is all in their heads.
Syndromes: dictionary definition - "collection of symptoms". Not, to me, a diagnosis. Just an end-of-the-line pronouncement, supposedly once all else eliminated.
In reality, reached for sometimes almost immediately.
I was "diagnosed" with IBS (Irritable Bowel Syndrome) by a gastroenterologist after a conversation lasting about 10 minutes. My GP was not impressed by this and sent me to another gastroenterologist who did the same. She tried again with a different one: this time I had tests which showed "patchy gastric metaplasia" and "flattened mucosal pattern at D1 and D2" - and suspected coeliac disease was ruled out. Result ? IBS "diagnosed" again.
Luckily, the GP did not believe any of them.
I honestly think that these gastroenterologists would prefer to follow the first diagnosis, however flawed or unlikely, than risk upsetting a colleague.
We really need medical professionals at all levels and in all departments to recognise the severity of B12 deficiency and the life-altering collection of symptoms that it can bring. This would stop them searching endlessly for the "something more serious" that is never found, and a syndrome being dropped into the void as a diagnosis !
Meanwhile, a life to be had.
PS: There is, I'm absolutely certain, a link between autism and B12 deficiency (perhaps autoimmune conditions) - but again, much more work required on that one.
My IBS label was dished out together with the Fibro Myalgia diagnosis ! Apparently the two go together. 🤔
I have a list of autoimmune conditions which they didn't even consider, It was all done in a very flippant manner by a neurologist.
I spent 10 mins with the gastrologist, months waiting for all the various scans and pipes stuck where the sun dont shine. 😱 I'm still waiting months after for a follow up.....but thats the NHS .
In the new guidelines many of the chronic symptoms weren't even listed !
The pitiful list of symptoms of B12 deficiency as taught to primary care medical professionals is part of the reason why we end up seeing so many specialists. Doctors (and consultants) do not seem to be aware of the severity and range of problems lack of B12 causes - so become convinced that we have something far more serious.
When absolutely all else is eliminated, you'd think that would be enough to prove how bad it can get. My own symptoms list was copied for a haematologist's records - maybe the way forward ? Take your own list with you and ensure a copy is kept. Sooner or later, let's hope, similarities are noticed between B12 deficient patients ....
Lightbulb !
But there must surely be, for those in primary care at least, plenty of clues to pick up on regarding symptoms, for example:
Day 1: By the time I had to record the 6 loading injections into my diary at the GP surgery reception desk , I was confused and not able to follow the receptionist's instructions so had to get my partner to do it for me.
I'm willing to bet that I wasn't the first to do that.
Alright, that's only one symptom - but cognitive issues like this can leave you unemployable.
My top leed London haematologist admitted she new nothing about PA or a B12 deficiency.......I was taken aback by that.
The swine of a neurologist I saw was adament my symptoms had nothing to do with B12 ! When I tried to explain how my blurred vision he put his hand up telling me it was not one of the symptoms...... I was delighted to see that was one of the symptoms Nice listed.
My cognitive issues were put down to FND ?
Must go Cherylclaire I am being taken out for lunch.......I shall escape from my prison for an hour or two. 😘
Good news - you going out to lunch I mean. Enjoy it, Jillymo.
I was quite glad to be in today: Pascoe suddenly arrived without fanfare. Good dates, too : 09/2026 ! YIPPEE ! Now I can relax for another year.
Whoopee another years worth of liquid gold. 🥳🎉 I must get some more before the warmer weather arrives.
I was only out for an hour and a half but lunch was good. 😋 I've a hospital appt today for guided inkections into my joints, i'm dreading it........i'm no hero when ot comes to pain.
Ow ! Hope your injections help, and now over and done with.
As for liquid gold: if only the medical profession understood how bad symptoms can be, they might understand why we would can't ever go back there. An injection every three months does not help bring us all back.
Worth £100 to German chemists, and no return of symptoms to us.
Win, win !
"Doctors (and consultants) do not seem to be aware of the severity and range of problems lack of B12 causes"
For others reading this thread who meet health professionals who are unaware of the range of symptoms.
Symptoms lists for B12 deficiency
pernicious-anaemia-society....
b12info.com/signs-and-sympt...
b12awareness.org/cobalamin-... (from B12 Awareness - US)
b12-institute.nl/en/symptom... (from B12 Institute -Netherlands)
Symptoms of Peripheral Neuropathy (damage to peripheral nerves)
nhs.uk/conditions/periphera...
Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.
The only way this is going to change is if doctors start being trained by charitys like the PA society instead of having currupting drug companys influence. Most GPs mean well and actually think they are doing a good job but they are the most incompetant profession in the world and dangerously ignorant of the harm they cause.
Wow, I did not expect so many replies!!! I thank each and every one of you for your comment ❤️
That B12 deficiency is responsible for such a range of problems is what makes it so difficult to discuss with a doctor. If only they were taught about its role in cellular metabolism and dna replication they might be able to make the connection and see that it is the root cause of so many of the misdiagnoses handed out.
I think the very wide range of symptoms I experienced (over 50 symptoms) delayed diagnosis...I suspect some health professionals thought I was making it up or exaggerating and some put it down to psychosomatic symptoms.
Yes it is very disheartening. I rehearse what I want to say but it never sounds convincing especially when you know your doctor is waiting for the chance to contradict you…
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