Might be ignored but they do provide a focus. Doctors do find it somewhat awkward when what they are doing is a direct and unarguable breech. If not at the time, and to the individual patient, then in time and if ever at a GMC (or whatever) hearing.
Also, patients can direct criticism at and to NICE for the future. You can pick up anything and explain why it is wrong. (Even if you have no impact.)
Whereas without a NICE guidelines you are chasing innumerable guidelines and sort-of guidelines and customs and practices around the country.
Yes that's true. It reminds me I need to comment to NICE.
But as the doctor at my recent appoinbtment put it: 'We don't have to follow NICE guidelines'. As you have pointed out elsewhere, this can work both ways. Which I guess still leaves us patients arguing our case, potentially, to a GP who is resistant to 'NICE'.
NICE is one piece of the puzzle I guess.
So, how do we educate the educators at degree and postgrad level? It seems they have the most sway of all, over NICE, over research, over the leading lights of B12, Thyroid, of any area of medicine.
Who are these people and how is their curriculum set? And by whom? Do doctors do CPD?
I think brand new NICE guidelines are quite powerful. Difficult for anyone to dismiss them as being out of date or somehow already taken account of in local guidelines.
I think that is pretty much what I pointed out earlier in the thread.
My point about brand new guidelines is that in the near future the draft B12 guidelines will be finalised and at that point they will be brand new NICE guidelines.
I consider myself put in my place well and truly, helvella. My apologies to you for my inefficiency - I believed I was actally responding onto another member's post; also for my poorly-functioning capacity in not memorising your response.
It's been a fun circa two hours since I returned to the forum, having taken a break from it for a few days. I now return to a non-participatory role for the time-being.
Ironically, GPs and all doctors do more CPD nowadays than ever before. After " Shipman " they also had to undergo a rigorous, regular ' Revalidation ' process.
Has this resulted in improved patient care ?
I don't think so !
If medicine is like dentistry, in which I worked laterly, CPD will consist of 'Mandatory Core' subjects and 'Voluntary ' subjects.
Core subjects will consist of, for example, medical emergencies and anything else regarded as crucial to knowledge and/or which regularly change, eg, infection guidelines.
Voluntary subjects still have a mandatory, minimum number of hours required to be completed, but there is flexibily in what the doctor chooses to study.
Therefore if they're not interested in B12 deficiency, unfortunately they can ignore it !
Oh lordy sort of wish hadn't read those comments...dunderheads.I'm glad you posted though, because it's made me realise that not all doctors are dunderheads, there are open-minded ones who do get a mention on here, and ones whose minds we are still working on opening...😁
Every time one of us goes to a doctor and raises the issue, even if rebuffed, we're another person feeding in the idea of B12 issues.
B12B12B12 drip drip drip, growing our B12 stalagmite up from the floor.
It's a war of attrition as well as education. Guess I'm an 88kg boulder😄
Needs channeling, that lava.😀 It can also flow fast or slow. I'm favouring a slow but relentless burn in the form of letters, emails, here there and everywhere, keep coming back to GP, asking questions. A fast eruption would probably see me banned from the surgery!
I have in mind, when I'm not sofa-bound, to put a simple A4 in a local coffee shop on the notice board they have (lots of local classes, dog-walking, etc. advertised). Drawing attention to B12 and Thyroid issues. From a sufferer, to stoke debate and bring awareness. I haven't got to thinking what I will write yet, but I want to stop people in their tracks and make them think. Maybe they know a relative or friend with unexplained symptoms. So many of us are ill.
I'm thinking of mentioning links to the HU forums for PA and TUK. Still mulling on how to word it. But I'm going to do it. Hopefully local GPs will be overwhelmed with influx of people asking about thyroid and B12.
Now there's an idea! I am very much housebound at the moment and barely move off my sofa, still fighting the health system, and not able to focus on raising awareness to a wider extent but I wish you success with that. You could always draft something and post on the forum for feedback? Remember that people tend to have short attention spans...
Not surprised, have come across a few . Those ‘doctors’ are showing their true colours. Mediocre physicians unwilling to re school themselves, g-d forbid if they are yours.
‘Unwilling to re school’ is spot on. I recently changed GP surgeries for that very reason and thought I’d found a good one who agreed that high levels while supplementing was nothing to be concerned about, then when results of over 1000 came back on routine tests, looked at me condescendingly and said ‘no need to supplement now, so save your money’! Didn’t tell him it was injections, just said OK and left. Couldn’t be bothered with the fight any more 🙄
I had one of those condescending ones, just got up and walked out, saving my breath, tired of continuously having to explain and fight my corner. I manage myself since.
I wonder what Neil Banik thinks is the cause of B12 deficiency in those 150 patients ? I wonder if any of them are reading this - and feel that this might be an issue they'd want to discuss with him ?
Sadly I do not think that is what he meant either, but what Wizard says is what Dr Chandy suggests happened in his own practice - by testing to pick up a deficiency early and getting enough B12 into the deficient, the folate cycle doesn't misfire making autoimmunity far less likely, so none of his patients got as far as PA. Of course this may not prevent all causes (some surgical for example), but it is interesting nonetheless. The suggestion was not that you could cure PA. (Although like other autoimmunity, it might be possible to slow down the process and reduce the likelihood of developing AI numbers 2,3,4 etc once you know your own personal triggers).
The guidelines are the result of beauracrates the way they tend to act.
The reason that those that have a better understanding of B12 deficiency treatment do not respond may be they are accepting the guidelines are an improvement and do not want to jeopardise approval.
I found the prior guidelines a valuable place to start.
There is, at least, a means of being able to challenge a GP's decision on diagnosis/treatment. These are, after all, professional guidelines for GPs to choose to follow. But if they don't, then there may be occasion when they will be expected to answer why they chose a different route. It is all we have.
Unfortunately, functional B12 deficiency is not mentioned in these guidelines.
I can't get my head round responding - I don't do social media, creating accounts etc- always seems to depend on memory and passwords ! So instead I'll just tell you, and hope someone who is more tech-savvy will be like-minded and forward the remarks they agree with:
There is much in the draft that I think will help. What won't help ?
These are my main worries:
1.1.3: Asking GPs to tell patients that "treatment with vitamin B12 replacement is effective in most people" because I think this is far from the truth. It is currently not possible to determine who is or isn't finding treatment effective, as patients who end up self-injecting do not always feel able to tell their GPs and GPs do not have much contact with patients anyway once B12 deficiency is discovered, passing them on to the nurses instead.
I do appreciate that more of a discussion between GP and patient at this early stage would be a good thing in general.
1.1.3: "Some causes of vitamin B12 deficiency will need (and receive) lifelong treatment, such as deficiency caused by autoimmune gastritis " - is autoimmune gastritis something a GP would recognise in a patient ? Is there a symptoms list for this ? Wouldn't this only be diagnosed by gastroenterology ? No other condition is mentioned here as qualifying for lifelong B12 treatment, yet I cannot see any gastric symptoms listed in Box 1, the symptoms list (p7/41).
While the symptoms list has expanded from those a GP might be immediately aware of, which is useful, there are many symptoms missing that might make for easier visual identification at primary care level, and at earlier stages of the deficiency.
Also relieved that in Box 2 (p8/41), among the common risk factors, there is "family history of vitamin B12 deficiency or an autoimmune condition" listed - so if your family is rife with psoriasis, vitiligo, Hashimoto's and the like, it is now worth mentioning. Atrophic gastritis is mentioned here as a common risk factor, but is not necessarily medically diagnosed at this early stage.
Thresholds (p10/41): this is a concern.
1.3.8: A confirmed deficiency would require a total B12 of less than 180 ng/L. That's too low - and will cost people unnecessary deterioration.
1.3.9: Homocysteine test results are mentioned here, with GPs using "clinical judgement" to determine a reference range.
1.3.10: Mercifully, there is a measurable indeterminate "grey area" of between 180-350 ng/L - as long as there is a follow-up MMA test result to back this up. Quite what that figure should be, of course, varies greatly. This test would need to be done before any injection given, and this might delay treatment (and cost a fair bit).
1.3.12: A GP can consider treatment without waiting for the MMA under certain conditions, one of which mentions irreversible vitamin B12 deficiency - and cites the example, once again, of autoimmune gastritis.
1.4.3: If autoimmune gastritis is still suspected despite a negative anti-intrinsic factor antibody test, one of the options mentioned is a CobaSorb test "to measure vitamin B12 absorption". [Strange way to introduce a test that no-one seems to have had before !]
1.5.1: GPs are tasked with telling patients at the start of treatment "how long it usually takes for treatment to take effect" - yet this is not known. And this imagined figure is likely to be important later, when deciding if treatment is effective or not.
In the entire draft of 41 pages, much mention is made of autoimmune gastritis, and every possible other situation is at least touched on: from vegan diets to terminal ileal resection.
Except functional B12 deficiency, which is not mentioned once.
Strangely, the committee agreed that, based on their own experience, homocysteine was more reliable than MMA for testing for B12 deficiency among those who misuse nitrous oxide -"because elevated homocysteine in the body is seen before a rise in MMA" (p28,29/41) yet later (p30) state that "an MMA test may still be the best indicator of a deficiency". I'm not sure that this has been researched yet.
The committee have identified need for research in quite a few areas.
One of the best sentences in the report is to be found on p33:
"...They (the committee) also agreed there was a need for further research into the optimal treatment strategies for different causes of deficiency, particularly focusing on patient-reported outcomes."
So really, read it to the end to get the rewards !
If you do email, you can send it to Tracey Witty She has offered to compile & send remarks to NICE AND they will be published because she is a stakeholder
Ok no worries. I can send it, unless someone else volunteers, & will add a few remarks of my own eg testing Macro B12 because that fits with functional deficiency. Probably this weekend or early next week. I haven't gone through them myself yet but not sure if i will have time before the deadline.
Hi Cherylclaire , I just sent Tracey yours and my comments. I have a feeling the committee will be inundated with responses. Here are mine:
I am mainly concerned about the following issues; there are other concerns but these have likely been extensively commented on by others.
1. Lack of any remarks on MacroB12 testing - even though it is mentioned in Evidence Review : [C] Evidence review for diagnostic tests. The conclusion of the committee is that "it is the laboratory’s responsibility to produce technically valid results". While this is technically true, there seems to be lack of awareness among both labs and clinician that such a test interference can occur. If even a simple warning statement would be placed in the official guidelines, then people would know the committee considers this important issue and it will give the test/issue credibility. Labs may be more likely to change their practices to address MacroB12 interference if the committee officially acknowledged it in the guidelines, for example in the section "Factors that can affect initial test results". As it is, a highly important source of interference is not acknowledged as a cause of false negative B12 deficiency, leaving clinicians - especially GPs - woefully unaware. The result will be a misdiagnosis of those who could indeed be highly B12 deficiency (whether on injections or not), and all the costs associated with untreated B12 - to the patient (SACD), to the clinician (repeat visits for patient feeling unwell), and to society (patient unable to continue working).
2. There is no mention of functional deficiency in the guidelines. Although several studies are considered in Evidence Reviews [B] and [C], not a single acknowledgement has been made in the draft review. This could have been mentioned under section 1.5.16 for example. If the guidelines don't mention them, clinicials will be unaware that such a thing as "functional B12 deficiency" even exists.
3. I also object to several of the comments in Review [C] (some of them specific to functional deficiency):
- In "Table 24: Studies excluded from the clinical review," at least 8 papers have been 'rejected' because "Full text paper not available". That is not a good reason to exclude a paper from an evidence review from a governmental body. The committee can buy them online for or ask one of their university members to download it.
- In the same table, many papers are rejected because "No diagnostic accuracy measures" - please define exactly what "diagnostic accuracy measures" are/mean and how future studies can correct this defect. It is unclear from the context, since many of these papers do report TP/TN/FP/FN/Sensitivity/Specificity. It would also be useful to future researchers for the committee to clearly define what kinds of "high quality" studies they are expecting, since clearly not one of these papers met the requirements.
4. Regarding "Self-administration of vitamin B12 replacement" , the committee concludes " because there were no data on the effectiveness or safety of self-administration." however many European and other countries sell injectable B12 over-the-country (among others: Belgium, Germany, Canada, Australia), and furthermore many people self-inject potentially harmful medications at home such as insulin. B12 has been shown to be safe even at high doses, unlike insulin. Given all this, it is unclear what kind of safety issues the committee is expecting to find. Furthermore, who will fund and carry out these studies? B12 is not patentable, so no pharmaceutical company will fund such studies. Is the government planning on funding these studies in the near future? It is a bit of a red herring to say "further studies are needed" when clearly no one will be conducting these studies. Leaving patients to continue suffering, when a cheap and safe vitamin is all they need.
Thank you very much for your help on this, jade_s . I hope they are inundated with responses, especially if as impressive and thoughtful as yours above.
Also quite sure that whatever we have identified is already on Tracey Witty's list !
You're welcome but i missed her submission, she had already submitted it this morning 😭 i will figure out how to submit using their form in the morning. They want each comment on a separate line in a Word doc. Sigh. Problem is that I mixed up the deadline - i thought it was the 24th. Anyhooooo she did say that what we mentioned was already covered (as you say, and as i would have expected). I'll make an attempt anyway.
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