Hi All,
Thought this might be of interest to all here, especially those in UK.
pulsetoday.co.uk/clinical-f...
I find the section on "Making improvements and supporting patients" scary as it suggests the possibility of pausing treatment.
If they're going to post an article about over diagnosis I wish they would balance it with an article about consequences of under diagnosis.
Since there is no 100% reliable test for B12 deficiency, I'm not sure how anyone can be sure it's "overdiagnosed".
Yes, absolutely zero evidence in the article that B12 deficiency is overdiagnosed. The article assumes this totally false premise and then goes gung ho into how we can prevent this dreadful overdiagnosis.
Feel like these guys are the same kind who would have denied that smoking could possibly be bad for you and that climate change exists. Just make stuff up to suit your world view.
I have just read Martyn Hooper's book "Living with Pernicious Anaemia & Vitamen B12 Deficiency." Its first class and would counter the nonsense in that article. I have ordered a copy for my GP who I am seeing on Friday - hope it arrives in time.
A test that I would like to see tested and developed and likely never will be is that B12 injections of B12 of .05 mg of Hydroxocobalamin be given by the patient SL every morning for two weeks.
This likely would have an effect only if the person was B12 deficient.
Reasons it will likely never be tested.
SL self injection does not meet the physicians personal needs.
Testing in this manner would require an ability to establish what the patient is actually experiencing and not what the physician is trained to assign to the patient. This ability would be required to determine what patient should have this test and to determine its effect.
Is the PAS one of these?
Beware strong loony b12 advocacy groups. Do not anger that lot. Aggressive bunch akin to human hating vegan animal rights maniacs.
(Not, of course in reality. But in that commentor's view.)
Well that article is all over the place .He suggests training .
Training only effective by someone with a clear understanding.
I agree worrying parts about' pausing ' treatment and retesting.
No knowledge of how ill this could make the majority.
He has missed the ' normal' process can be overridden by large doses of b12 so then need high levels to function anyhow
I depair
Might help with the anxiety and depression diagnoses if they actually looked at B12/folate pre- antidepressants.
Thank you Sleepybunny,
Dr Coleman has acknowledged how difficult it is being a G.P. They are people at the end of the day. They suffer decision fatigue, compassion fatigue and he does state,
‘non-medical clinicians may not have received the same depth of training in biochemistry, which could impact requesting habits’.
Just throwing this into the mix, my sister, one of her best friends and I were having a conversation. The friend had damaged her car. None of us could remember the word ‘branches’.
The paediatrician, the surgeon and the midwife were absolutely exhausted from working for the NHS. One of us had worked 31 hours straight which is totally unsafe.
🐳
True, but it doesn't account for the sarcasm , gaslighting and ignorance in the comments section ! 😡
Ghound,
It utterly broke my heart when I learnt of this hideous illness. I was angry I had not been taught. I lost my job because of it. Ignorance is not bliss.
However, I have the connections so I can educate. It is only a ‘drip feed’ at the moment but hopefully, in time, that will change.
Today, I went for my 12 weekly B12 injection. The nurse is lovely and I have known her for quiet sometime. I said this is my last one from the surgery. I have to self-inject daily and explained that I had forgotten yesterday. I had popped to the shops and ended up clinging to a bus stop to hold myself up. The key phrase I use is, ‘We all have different metabolisms.’
So true Narwhal ! I left the job I loved because I wasn't coping with fatigue etc.
I was so far advanced with my B12 deficiency, ie. unable to think straight, that I didn't even comprehend that I was ill !
I should have been on sick leave, but no, stupidly I just felt I had to resign !
All those years of throwing myself wholeheartedly into my career - down the drain ...
We can't really afford for me to have missed out on several years salary plus the implications for my pension, but that's what's happened .
I totally sympathise with you !
Take care, best wishes xx
Oh Ghound,
I am so very, very sorry. I can empathise completely with not thinking straight and being far too ill to know or even care. It sounds like you loved your job and were passionate about it. It’s so difficult when we have to resign on the grounds of ill health.
I was staggering around like a ‘drunken thing’ at work. Still determined but then I had a problem with my hearing. It was not my stethoscope, it was me. It took me years to admit and one of the first people I told was Ms T Witty. My voice broke, tears welled and I remember exactly where, who and when but I did not know the WHY.
Take good care, my friend xxx
You reminded me of when first realised I was ill - holding onto the bus-stop in the morning while waiting for the bus to work, and hoping against hope that a seat would still be available. That should have been a big clue that I was no longer fit for work !
We try, long after it's sensible.
I am so sorry Cherylclaire,
We are pushing our bodies beyond its ability and just clinging on for dear life. Yes, ‘I can do this’ with steely determination.
Months ago I went to a talk about kidney transplants. The lady said she had kidney disease as a young girl. Her parents took her to the doctors for blood tests. A couple of days later, the GP rang their home and said Go to hospital. The staff were waiting outside with a bed. They were amazed that the teenager walked in because her blood results showed her to be very unwell.
Years later, after she had a kidney transplant, she said, Wow is this how I am supposed to feel ? She had adapted to being so unwell.
The Swiss zoologist and psychologist Jean Piaget stated,
Intelligence is the ability to adapt.
I do wonder how many doctors are emotionally intelligent ? How they would score on a Mayer-Salovey-Caruso Emotional Intelligence Test ?
I always remember one female G.P. standing up and walking across the room. Engaging smile and coming up to me and shaking my hand. Absolutely lovely woman who had read lots of books.
🤓
Kindness counts for so much.
It does indeed Cherylclaire,
Empathetic listening. I remember one fool telling me to walk 5 kilometres a day to improve my mood. Each time, I maintained that I had a spinal injury. I was spending about £90 a week on a chiropractor. He (the ‘doctor’) refused outright to listen. So, I used 2 of my favourite words. The same words that I had graffitied aged 6 on a fence.
I still photograph graffiti. Banksy has done pretty alright for himself. Maybe we should show Dr David Coleman, the author of the Pulse article, posted by Sleepybunny, the attached image.
😘
I also photograph graffiti .
I also take photos of my symptoms. Saves wasting my breath explaining them.
Images have more impact.
That's also why I paint.
I saw a bumper sticker "What wisdom is greater than kindness?" That resonated with me.
It is one of my biggest regrets - that I still have mood swings that are not under my control. So I aim for kindness whenever I am not mercurial- and hope for understanding and forgiveness from others.
I am not my illness.
You are Cherylclaire,
A person who has hopes, dreams, gets through each day. Knows people. You sharpen your pencil with a thingy (er forgot word). You are knowledgable and have friends and family on here and in the real world.
Sorry, to learn of mood swings. Understanding and allowances can me made. I strongly believe that PA/B12D, thyroid illnesses, coeliac disease, diabetes, other genetic and biochemical imbalances impact all on mood. I remember a few years ago, I ripped someone’s head off, I could not verbalise that I was about to faint. I just shouted at them until I could sit down. I caught my breath. Gave myself a few minutes and then was okay to drive. They did not accept my apology. When I got my blood results, I thought how on earth did I walk here, my iron stores were in my boots.
Lack of oxygen to the brain from P.A. and iron deficiency really can make us very unwell.
😘
I honestly think that when I have run out of every last ounce of energy, I can only summon more via adrenalin from anger. Not purposefully, just a source switchover.
I have noticed that I no longer use adrenaline in the same way to thrive. It is a lot of work to get used to the change. Sometimes I miss it but not the adrenaline hang over.
It is purely normal that switching over to the ‘emotional’ and using anger to undertake tasks or get through the day.
It is seen in athletes and most importantly, in child birth. A woman will have laboured until the cervix is fully dilated. Then there is the Calm before the Storm. A woman will go into herself, becoming focused, determined, gathering her strength. This is called the Transitional stage. Soon she is going to use every fibre in her body for the Second stage of labour.
We direct women in this stage, often telling them to Get Angry and use their Power to push their baby through the birthing canal. Often, I would be at the side of a bed, saying, Again and practically doing the Hakka myself.
One has to be careful with being in a constant state of anger because of norepinephrine and epinephrine (adrenaline) as cortisol levels rise. That’s another ball game.
😘
I wonder how many are high functioning sociopaths. Not likely that Psychiatrist who are doctors will face that possibility.
I do find it helpful to understand that doctors are not only not elite they are quite common and very powerful.
I also find it helpful that a GP is not an emergency room doctor although have the same brand of Nobel Cause.
So, doctors are not very good at accurate note taking. Some have appalling handwriting. Others do not put the time or write the wrong date. In the U.K., all these are appropriate :-
a) Access to Health Records Act (1990).
b) Caldicott Principles (Published by the National Data Guardian for Health and Social Care on 8 December 2020).
c) Common Law Duty of Confidentiality (The U.K. Caldicott Guardian Council).
d) Computer Misuse Act (1990).
e) Confidentiality : NHS Code of Practice (Information Security Management - NHS Code of Practice published on 7 November 2003).
f) Data Security and Protection Toolkit (DSPT) (Published by the Department of Health and Social Care on 30 October 2017. Last updated 22 January 2018).
g) Freedom of Information Act (2000).
h) Information Security Management - NHS Code of Practice. (Published by the Department of Health and Social Care on 20 April 2007).
i) Network and Information Systems (NIS) Regulations (2018). (Published by the Department of Digital, Culture, Media & Sport on 20 April 2018. Last updated 4 January 2023).
j) Records Management Code of Practice (2021). (Published by the Department of Health and Social Care on 29 July 2016. Last updated 10 August 2021).
BUT there are loads more DATA laws. My first degree was Computer Science and Information Systems so, I know how to create, build, patch and hack. The latter we would do with permission to test each others’ firewalls.
Doctors forget ALL of the above. Computer languages are international and Fraud does not just occur in Banking. Elon Musk had a nice chat with Rushi Sunak about Artificial Intelligence. Back in the 1990’s a large organisation plagiarised my University and Personal tutor’s work. He never got an apology but the story did end up in National news.
None of us really know who each other are. Unless someone has bothered to fill in their biography and others read it. 🤪
I have access to my doctors notes and they are written at the 8th grade level with medical terms.
Much fabrication.
To date there is always part of the writing that seems to be an attempt to prove me a lesser human. Each time.
There are also doctor to doctor notes. Those have got to be worse.
The emotional level seems to be different with each doctor. None reach high high school level.
They have their usage.
Much fabrication. It is either misinformation or disinformation. So, I read it and find evidence to support and prove which one it is or is not. Simples.
If it is supposition then I will prove that as well because I have no evidence to support a ‘working hypothesis’. Well, you did not order blood tests, you did not order an MRI, nor an ECG, you just thought they were feigning symptoms so you just left them and sent them home.
What other profession blames others for their inability to act in a professional manner?
At the very least they should disclose to the patient they are physically unable to practice in a professional manner.
I question the self diagnosis of physical fatigue as the cause of unethical and therefore incompetent behavior.
Claiming being over worked is not unique to physicians.
Wizard, despite displacing 4 of my lower vertebrae, I still went to work on a super busy ward. On days off, me and the girls would often see each other in a chiropractor’s waiting room.
Another type of doctor (not a chiropractor) was adamant that my problems lay with being physically inactive. He had no idea what working in obstetrics is like. Most of us were pretty fit and we moved. So, doctor who would not listen at 3 appointments, what I was saying as a qualified Health professional, totally disregarded my injury, my X-ray and another Health Professional, I stood my ground and told him where to go. Then I reported him because if someone has a disability, they have to comply with the law and not discriminate against you and put it in your Care Plan. 🤓
Sorry you experienced that. Sorry it seems to be the norm.
It is what it. All part of the journey is it not.
I am OK with it is wrong and part of my journey.
As usual with these articles, it is the responses from GPs at the end that I find totally disheartening. Are any of us merely "tired" ???
The day I returned to work after 4 terms off sick, on a phased return starting with one day a week: I was given a massive pile of paperwork to mark, by the man who used to be my assistant. I gave him a printout of a list of symptoms so that he could understand why I was being phased in gently ....
he said "What have we got, then ? This could just as easily apply to me !"
Not just GPs that can dishearten you.
Bit worrying about the re-testing... cue the eternal merry-go-round of recurring symptoms...
Review all patients with an active diagnosis of vitamin B12 to identify if the diagnostic guidelines were followed. If not, consider pausing treatment and retesting.
As others have noticed, the comments section is very disheartening. Vitamin D 'fetish'!? I get that 'tiredness' is common, but the tiredness that had me falling asleep at my desk, or not even go for a walk in the park, when previously I was climbing mountains and running 10k's isn't something I chose for myself. This nearly cost me my business and also my mental health had I not decided to treat myself.
I think there are currently reviews of people on B12 injections going on across UK.
Articles that mention reviews of patients on B12 injections.
guidelinesinpractice.co.uk/...
nhslguidelines.scot.nhs.uk/...
ruh.nhs.uk/For_Clinicians/d...
For UK forum members try searching online for
- Review B12 injections nhs "name of ICB/Health Board" -
Might also be worth searching "B12 injections review" on GP surgery website.
I suggest anyone in UK keeps an eye on the local B12 deficiency guidelines used by their ICB/Health Board.
These are very likely to change after new NICE guidelines are published in 2024.
nice.org.uk/guidance/indeve...
Local B12 deficiency guidelines don't always change for the better... See blog post below.
b12info.com/gloucestershire...
Thanks Sleepybunny . I've given up even trying to obtain a diagnosis and this isn't something I even mention to my GP now. It's just not worth it. All it does is increase my health anxiety when they try to dissuade me from the supplements I take. I now feel better than I have in literally years, so will just continue with what's working.
Looking through these guidelines, the only driving factor seems to be saving money - at the expense of making people ill again before deciding if they deserve treatment. Same old.
Also, worrying levels of misinformation on there too... 😡
"Meanwhile, many clinicians feel B12 deficiency is often overdiagnosed."
Well at one point clinicians also felt that leeches & trempanning were suitable treatments. Feelings are neither science nor medicine. 🧐
😂 Yes leeches are good. I am quite into aromatherapy, an Eastern ‘medicine’.
I was coming home from wherever and a shop caught my eye. Soon there was another person and I smelling all these oils. I bought a collection. The reason I had stopped was the sign outside,
‘Every woman no matter where she lives, deserves the opportunity to develop the promise inside of her.’
It is only now that my family are beginning to understand me. I would frequently pack my rucksack and travel to remote places.
Midwife means ‘with woman’ and those are the words of Michelle O’Bama.
I would take a Pulse (the name of the medical publication that we are discussing) using my hands. 😉
Actually yes no offence to leeches, they are still quite useful 😂
Thanks for sharing the wisdom 😊
NHS uses leeches.
See video below
itv.com/news/wales/2022-09-...
Thank you Sleepybunny,
I knew the NHS still used them but had where they were sourced. Although, I was having a conversation with someone recently about a particular hospital that is a major ‘burns’ hospital. It really is a ‘small world’.
🐳
Interesting how the author states that "many clinicians feel B12 deficiency is often overdiagnosed" but gives absolutely no evidence that is the case.
The part about ceasing injections and retesting is very concerning - I really hope the new NICE guidance is going to make it clear that blood tests following any form of treatment are completely unreliable. Unfortunately though, this is something that many of us have had to learn from experience - I don't think that there is actually any scientific evidence for this. The only 'official' mention I've seen online is the Dutch B12 Institute (@b12-institute.nl/en/diagnos...
One of the comments on the article:
"Not only overdiagnosis, but overtreatment. The loading dose regimen is clearly a haematology directed regimen, with no consideration of GP resources.
NICE is advising 6 loading doses over 2 weeks based on expert advice. That’s 6 nurse appointments and the time, travel and environmental costs of patients attending these appointments.
I have never heard of a single patient who came to harm from having a single loading dose of B12."
Is this guy living on a completely different planet?
Thank you for posting. Wow, those comments...lord help any B12 deficient patient who has the misfortune to encounter a gp like that. Especially the one who believes 1 loading dose is enough, and has never seen anyone suffer from that? Err, that's because they went somewhere else or gave up altogether, found this forum and self injected Mr Monster Ego!
b12 deficiency need advice
Could it not be PA/B12 deficiency?
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