I administer my adult daughters B12 monthly due to her having been misdiagnosed with MS and having peripheral neuropathy. Her GP finally agreed to see her face to face but insisted on blood tests first and has now called her in to discuss her high levels!!? She is anxious about the appointment and I have given her a lot of information. I'm trying to re assure her and think ahead what GP will say...Just seen this article indianexpress.com/article/l...
GP discussion re too much B12 - Pernicious Anaemi...
GP discussion re too much B12
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pinkpaddleboarder
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I'm surprised that the dietician quoted in the article would spout such nonsense.
Most of the "overdose" symptoms are not uncommon symptoms of late stage B12 deficiency or of symptoms seen in early treatment decline.
They can be often be found listed as "side effects" on the prescription material for injectable B12. The large list of possible symptoms is sort of an attempt to "cover all bases" and mention everything seen when B12 is injected even though such symptoms might not be caused by the injection at all but be part of the deficiency or the sometimes quite unpleasant healing process (especially in early treatment decline).
With regards to the autism angle, I think this article covers it pretty well, with a measured response from a professor of nutrition on what conclusions we can draw from the study (spoiler: we can't conclude that B12 supplementation causes autism).
Please note this at the beginning of the article:
"“I’ve been a psychiatrist for 25 years and have wondered for years why my patients with autism have such high B12 levels, even though they haven’t taken vitamin supplements. I thought this was really strange,” says Hope."
There are many causes of high B12 levels (a diet very high in animal foods, serious health conditions or genetic issues with B12/folate metabolism) but the high B12 levels they were intrigued by and wanted to investigate were not caused by supplementation. This is a very important distinction.
sciencenorway.no/autism-vit...
Forum thread below mentions study where people with ASD (Autism Spectrum Disorder) had functional B12 deficiency.
healthunlocked.com/pasoc/po...
For others reading this thread.
Functional B12 deficiency is where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells so person develops deficiency symptoms.
MMA, homocysteine and Active B12 (holotranscobalamin) tests may help to diagnose functional B12 deficiency.
My daughter is definitely autistic!
Well i had a comment like that once.I just replied isn't that the point of b12 injections. Of course it's high.
The doctor was quiet and just nodded.
Nothing changed in my treatment.
I csn see why one can assume if levels of B12 are now high our bodies are replenished and off we go.
If only it was that simple !!
What was the original reasoning for such a high dose into the blood stream in the first place ?
Watching and observing the poorly person?
Scientific backing
I don't know .
Doctors should.
All these articles can be worrying to read.
What's the alternate though?
Can you go with your daughter.
Offer information from The Pernicious Anaemia Society .
I did .
Hope it goes well.
Sorry pinkpaddleboarder,
Please look at the title - it is from an India and a newspaper. A very different country than the U.K.
Her GP finally agreed to see her face to face but insisted on blood tests first and has now called her in to discuss her high levels.
A doctor cannot insist - it is called informed consent. (I drove one doctor mad because they wanted to weigh me, I repeated, No Thanks in a nice even tone. They did not know what to do except roll their eyes. Thought : Keep looking you may find your brain there.)
Is your doctor aware that the M.S. is a misdiagnosis ?
Hi, yes I saw it was an Indian Newspaper, first time I've seen a report stating you can overdose. Her GP refused her an appointment unless she had a blood test.She was told.by a neurologist that she had MS based on her symptoms years ago, luckily a spinal ans brain scan confirms it wasn't however she was then discharged and left with numb hands and fatigue and GP offered antidepressants which she refused! I then collapsed due to B12 deficiency and then guessed my daughter had the same! Hey ho... 12 months of injections later and she is cured! This is proof.. (even her second neurological consultations agrees and wrote to GP to say nothing else is found)however we want her GP to acknowledge her condition and for the injections to be done by the NHS as she is so scared of needles and I can't always be aeound
Bless you both. You have both had a very difficult time which is often the case. 😞
The P.A. Society provided figures on the number of people who had delays, misdiagnoses and the number of years. The physiological (biological) effect is ‘proof in the pudding’.
Obviously, you need your GP on board because of your daughter’s needle phobia. So, it is educating them and Sleepybunny has as always provided the resources.
I do hope you both get and receive your treatment.
Best wishes
I agree that newspaper articles are not reliable sources of medical information however would like to point out that India is brilliant in terms of medicine, not only Western as seen by the number of Indian doctors here, but also alternatives that are effective.
I have worked with some fantastic doctors, nurse and midwives. I practice both Eastern and Western medicine.
India has a different Model of Health Care. The Beveridge model is seen in the United Kingdom, New Zealand, Italy, Spain, Denmark, Sweden and Norway.
pinkpaddleboarder’s daughter is anxious about her forthcoming appointment, wanted to be prepared and was seeking reassurance.
Best wishes.
Hi,
Just a quick reply as about to go out.
If you have time, have a look at these articles.
Misconceptions about a B12 deficiency
(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)
stichtingb12tekort.nl/engli...
Diagnosis and Treatment Pitfalls(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)
b12-institute.nl/en/diagnos...
Blog post about being symptomatic for B12 deficiency with normal range serum B12
b12info.com/your-serum-b12-...
Testing B12 during Treatment
pernicious-anaemia-society....
stichtingb12tekort.nl/engli...
Help for GP
Maybe worth pointing these out to GP.
1) PAS website has a page for health professionals.
They can join PAS as affiliate members, no charge.
pernicious-anaemia-society....
2) Has GP heard about Club B12?
It's a group of doctors and researchers who are looking into B12.
They have regular zoom meetings and have hosted a conference.
3) Good articles to pass to GP
From Mayo Clinic, US
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
Recent BMJ article about B12 deficiency by B. Wolffenbuttel
In my personal opinion, he's one of the few doctors who understand B12 deficiency.
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
The author of above also wrote an article for PAS in Jan 2024.
Only One Chance
pernicious-anaemia-society....
Unhappy with Treatment (UK info)
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Thread about Patient Safety, has useful links for those in UK having difficult health experiences with B12 deficiency
healthunlocked.com/pasoc/po...
I'm not medically trained just someone who suffered for many years from unrecognised and untreated B12 deficiency.
Fantastic thanks. If she is refused help I will.put a letter together using this info.
PAS website has lots of useful articles.
pernicious-anaemia-society....
Some PAS members print them out and pass them to GP. You would need to be a PAS member to print most of them.
pernicious-anaemia-society....
If you haven't already, I suggest reading the following documents thoroughly. They should have some good quotes to include in letters.
NICE stands for National Institute of Health and Care Excellence
Search for "NICE CKS Anaemia - B12 and Folate deficiency" document.
NICE are due to publish a new B12 deficiency guideline in March 2024.
Search for "NICE Draft B12 deficiency guideline" if you want to see what they have done so far.
Also "BSH Cobalamin and Folate guideline"
b-s-h.org.uk/guidelines/gui...
PAS website has a summary of the above document
pernicious-anaemia-society....
Diagnostic flowchart from above document
It's completely normal to have high B12 when supplementing and it is nothing to be concerned about.
I'm not concerned, it's just the GP saying it's too.high! Obviously if you're injecting regularly but they refuse further treatment. If GP refuses her treatment I will complain.
How did it go?
Her appointment is Monday evening. Hoping for a positive update thank you
Another article that might be of interest
Treatment with high dose vitamin B12 been shown to be safe for more than 50 years
stichtingb12tekort.nl/engli...
If you look at the section on Indications and Doses in UK document "NICE CKS Anaemia - B12 and Folate Deficiency", it shows that the treatment for cyanide poisoning uses doses of hydroxocobalamin thousands of times higher than the 1mg in B12 injections.
I see lot's of great replies here, one thing I wanted to highlight was the use of the phrase "overdose" in this newspaper article, because it has the connotation of being a dose of a drug or medication which is high enough that it will cause death.
Getting acne from high B12 is not an "overdose"!! Maybe I'm being a stickler, but I think it's somewhat predatory to use a phrase that is established in the collective psyche as something which is associated with causing death, to talk about supposed symptoms of high B12.
Also, none of the "overdose" symptoms are backed up with real data either. Grrrrr. Fear mongering for reads...
Yes I agree. Thank you for your response.
If they refuse to give B12 treatment due to high B12 levels might be worth contacting Care Opinion, a review website that wants people's health experiences in UK.
Care Opinion
Sometimes GP surgeries and hospitals etc respond when people submit their stories.
It's possible to submit stories anonymously.
careopinion.org.uk/tellyour...
A forum member had a helpful response from Care Opinion recently. If you put "B12 deficiency" in search box on Care Opinion website, it shows several stories that might be of interest and some of them have responses.
This article might be worth passing to GPs to warn them about the potential consequences of withdrawing treatment.
It discusses a severe potential consequence of B12 deficiency.
PAS article about SACD, sub acute combined degeneration of the spinal cord.
pernicious-anaemia-society....
You would need to be a PAS member to access complete article.
pernicious-anaemia-society....
Other useful links in thread about Patient Safety in one of my other replies.
Thank you again so much, I just wish to be prepared as if my daughter gets a negative response it will greatly effect her due to her nature. You have been incredibly helpful.
I've just posted a new thread about Care Opinion website today.
I have written both mine and my daughter's story on the Care Opinion Website, thank you.
Just wondered if you had checked her ICBs (Integrated Care Board) B12 deficiency guideline to see if it said anything about withdrawal of treatment if B12 levels are high.
List ICBs England
nhs.uk/nhs-services/find-yo...
(In Wales/Scotland it's Health Boards)
Thank you, I have had a look at that page and searched for B12, however I can only see an FOI response with regard to giving oral supplements during the 'pandemic'... nothing with regards to the levels. Maybe I need to re word my search.
I think people should protect their privacy online but if you don't mind people knowing her ICB then maybe another forum member might be able to find something if you name ICB.
Threads from HU can appear on NHS website.
If you want to change setting of this thread to a more private one....
1) Go to original post and click More then click Edit.
2) Scroll down post to Share, click Community Only then Post.
It's possible to submit FOI (Freedom of Information) requests to ICB. Put FOI or Freedom of Information in search box on ICB website. This should take you to a page explaining the process.
If you haven't already, you could submit a FOI request asking which B12 deficiency guidelines they use and for a link to or copy of them. It's useful to get the title of the document.
Some ICBs and Health Boards are reviewing people on B12 injections. I suspect this is primarily a cost cutting measure. You may want to find out if there is an ongoing review of patients on B12 injections in ICB area.
FOI requests can also be submitted to GP surgeries.
CherylclaireForum Support
My Oral Medicine consultant was initially disturbed by my "sky-high" B12. I had been honest with him about self injecting about twice a week, but his main concern was that beyond 2000 ng/L, he could not ascertain whether the serum B12 level was continuing to increase. I could understand this as an honest worry.
He asked my GP whether I could be supported and monitored while trying to reduce this frequency, but there was no reply. Phew !
Meanwhile, he worked on trying to help me with problems that I saw as lingering B12 deficiency symptoms: angular cheilitis and burning, enlarged tongue. He could not find another cause, although he tried to grow cultures, suspecting candida or staphylococcus. I was also having problems with saliva duct strictures causing saliva gland swelling.
A year or so later, he walked in to my appointment and said "I've completely changed my mind about you self injecting. I have spoken to colleagues who are experts and my advice is now to continue with the injections as your body cannot process B12 - which also means that tablets wouldn't work for you."
Hallelujah !
Although he did not put this into a report, I did copy my GP into a letter I wrote to this consultant, asking him what exactly had these experts told him that had changed his mind so completely. No reply, but never mind.
My latest blood test results included the following:
Serum vitamin B12 >2000 ng/L, described (dismissed ?) by a GP as being "satisfactory".
Quite.
My usual GP, several years ago, ensured that my ineffective NHS frequency B12 injections were restarted at 2 a week because my MMA was found on her request to be raised. Renal problems being already ruled out as the cause, she acted on advice from consultants and diagnosed functional B12 deficiency, confirmed by the testing laboratory. This frequency at her request was continued for 6 months.
I can mainly manage my condition only by continuing this frequency. Plenty has been ruled out and nothing else has been found during the past seven years. I have been honest with all of the consultants I have met about what I do, and what that does for me.
My daughter saw her GP tonight. He said you haven't got a diagnosis'. She said I'm walking proof this works... he will discuss with GP.partners and get back to her. She showed him neurology consulting letters and years of evidence of brain scans, peripheral neuropathy etc.. oh tye irony, a GP wanting to look for a diagnosis and not just treat symptoms. Fingers crossed she gets a yes. If not I have planned complaint letters.
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