Just wanted to encourage UK forum members to submit comments on new B12 deficiency guidelines. Comments need to be submitted by 5pm Tues 22nd August.
These new guidelines are due to be published in 2024 and could affect treatment and diagnosis in UK for years so please think about submitting comments.
These are a few of my thoughts but happy to be corrected as struggling at moment and have probably missed something.
I've noticed that the list of symptoms of B12 deficiency in the draft document is quite short. I will submit a comment asking that this list of symptoms be expanded (with some suggestions).
There is as far as I can see, very little about people who are symptomatic with a normal range result.
I'd like to see clear direction to GPs that people with normal range serum B12 should be treated if symptomatic.
I'd like Functional B12 Deficiency to be clearly mentioned and discussed... don't think it's mentioned.
I also think that the list of possible causes of B12 deficiency needs to be expanded. I can't find any mention of internal parasites.
There is a lot more I could say.
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Sleepybunny
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I am with you this. I worked hard yesterday on it.
The more of us who comment will all have picked up on different pointers.
I agree:-
1) List of symptoms. ✔️
2) Symptomatic but in normal range ✔️
There is no effect test. I have harshly commented on this.
3) Clear direction for GP with normal range of B12. ✔️
4) Functional B12 deficiency to be mentioned and discussed. ✔️
They have no idea what is happening on a cellular level.
5) Causes to be expanded. ✔️
6) You are absolutely correct. ✔️
Parasites, H.pylori, salmonella, Small Intestinal Bacterial Overgrowth, Small Intestinal Archea Overgrowth, Small Intestinal Fungal Overgrowth.
I am sorry to learn you are struggling. 😞
I have added that G.P.s set up a monthly class to teach people to self -inject.
Most importantly, that before ANY mental health diagnosis or conversion disorder is diagnosed such as :-
Behavioural disorders in children, developmental disorders, ADHD, anxiety, eating disorders, functional neurological disorder, functional gastrointestinal disorder, bipolar, schizophrenia etc, vitamin B12 is tested. One psychiatrist in the U.S.A treats if the level is below 600 mg/L.
There appears to be severely lacking psychiatric perspective.
Lastly, how cool would it if the U.K. had a specialist B12 clinic dedicated to this insidious illness ?
Thank you for posting and sorry you are struggling xx
I still have to send mine and Cherylclaire's comments to Tracey Witty. I had to look through the 'evidence' documents to find any mention of functional deficiency- these two mention several functional studies but excludes them
and there is a section on macro b12 in review # 3 [C] Evidence review for diagnostic tests but they have decided that's outside of their scope ( i disagree )
Sorry to hear you are struggling, I am not firing on all cylinders either at the moment but I absolutely agree that commenting on this is so so very important.
I am working on this too and will finish this weekend! I hadn’t realised the deadline was creeping up. Time seems to go so fast when only phutting along!
Regardless of the NICE outcome we will all know we played a part in the B12 treatment saga - the phrase “every little helps!” comes to mind!
I agree with GPs inviting groups of patients who wish to self inject, to attend teaching sessions demonstrating a safe method of self injecting. After much begging a doctor has agreed to allow a nurse to show me this. I am thankful but wish this could also benefit other like minded people.
Why is Pernicious Anemia not mentioned in this draft ?
yes a full list of symptoms are needed, not just that it has same symptoms as many other conditions,
These Drs are not taught much on B12 deficiency, I know that for a fact as I have a consultant and GP friend and both said not taught much on it at all, even a GP who went on recent B12 deficiency course didn't know much !
My own GP didn't know my symptoms and also asked me what was needed to be tested she told me to find out and she would test it for me but that was only after I said my father had Pernicious Anemia on his death certificate, before that she wasn't willing to test more than the basic test they do
they need more info for the Dr that when taking supplements the b12 can be falsely high and doesn't get to people at cellular levels
Why haven't they mentioned that if you have auto immune Thyroid Graves or Hashimoto's you have 20-30% chance of getting another Auto immune disease their is research stating this.
although sounds a bit better it is not near enough information for GPs as they really are ignorant on B12, Pernicious anemia
I do not recall seeing that the MCV is high when people have a deficiency in B12 that needs to be addressed (unless I missed that bit.)
and why does it not mention that folate should also be given as they work together
I am sure pernicious anemia society has told them way more than this but on deaf ears it seems
I think mental illness should also be tested for deficiency as far as I remember when I was given anti depressants I was not tested for b12 just given them with no blood tests at all.. I am glad they mentioned it's cheap with no side effects but is that enough for Drs to give a trial . they keep mentioning tablets, well the tablets did nothing but make my bloods look really good and that's what they go by and that was methyl b12, I think the treatment they give in tablets are Cynon so even harder to absorb, it gives the Dr the opinion that tablets work where they do not in those who can't absorb b12
Hi. Thank you for pointing this out - I hadn’t realised we could respond as individuals or that the deadline was so close.
The list of symptoms is disappointingly short although helpful to see broad categories which can be interpreted. For me, if I get tinnitus I know I have missed an injection. Also, as mentioned already, how strange not to mention PA.
There isn’t any information about ‘Vit B12 replacement’ - ie every other day until symptoms improve- or the frequency of injections. Is this addressed somewhere else or not actually under review? (Or am I missing something).
I was disturbed that there’s a suggestion to use oral supplements if the cause is unknown - with a review at 3 months. I thought taking supplements would alter the result of the B12 blood test when they review. Is this the case?
It may be that my knowledge is not good enough to make a valid response but I still don’t know the cause of my B12 deficiency but do know that IM injections have been life-changing.
It would be good to get a response about my thoughts here - but I know people are doing a lot of work looking at the guidelines to officially respond. Many thanks to you for your commitment.
"We can accept comments from individuals. These will be considered, but you won’t get a formal response and they won’t be posted on the NICE website. !
How to submit comments
Go to Point 3 "Add your comments" in link below and click on blue link which says "comments form".
Hi Wwwdot, I just did this for mine and cherylclaire's comments. If you want help, let me know. It was relatively easy, but you need to download the Word document (Under point 3) on the website SB posted, and fill it in comment-by-comment, and then email it to NICE as indicated (point 4). Good luck!
PAS have left an interesting reply on jeremycat_ 's recent thread "Is the Pernicious Anaemia Society commenting on the proposed new NICE guidelines?" which explains that they have commented on the guidelines and also about the way they work.
There was also discussion on what they could do with more funding and more donations.
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