Our Doctor recently did a B12 and Ferritin blood test and is now demanding that we stop self injecting with immediate effect to prevent B12 toxicity…..
Has anyone ever heard of this and if not, how do we deal with this? My husband has megaloblastic anaeamia and stopping the injections could have fatal consequences for him.
Yes , I’ve heard it from a GP who was totally ignorant about Pernicious Anaemia and every aspect of it .
I suggest that you ask your GP for the medical reference to which he/she must be referring to state that . You could be diplomatic and suggest that he /she is mixing up B12 with a different vitamin which can be toxic if overdosed . ( many vitamins can be toxic if overdosed ) You cannot overdose with vitamin B12 . You can find such information on stichtingb12tekort in English .
If your GP is toxic and refuses to reinstate your husbands B12 injections , than you must either change doctors to one with better knowledge , go to a private GP to get an injection , use one of those beauty parlours that give B12 injections, or decide on self -injections , for which you can get the information on this forum .
Best wishes .
Hi Granny2024,
I echo wedgewood’s reply of asking for the evidence of B12 toxicity. The human body has these wonderful things called kidneys which excrete all kinds of stwff.
Please ask your GP what the cut-off level is to identify B12 deficiency in your area. Then explain that in one locality it is 130 mg/L. Ask for the science behind that !!!
Keep self injections and I love what you have written in your profile.
Da iawn
This happened to me and, like a fool, I did as he asked. With 6 weeks I was almost back at square one. I just can't understand how doctors can speak with such authority about things they obviously know so little about.
Personally I would chuckle in their general direction and ignore them but that's just me.
Yes, not worth dealing with.
Can you get that blood test result and post it here?
Generally, it’s fat soluble vitamins that can become toxic if overdosed as they can accumulate in the body.
B12 is water soluble and usually it’s quite difficult to overdose water soluble vitamins.
I think that once you are self-injecting the levels go up to the maximum that general lab tests can measure so it no longer gives you a measurement that has any usefulness.
refer him to the NICE guidelines.
There is no known toxicity, ask hi. To sjmhown the evidence of toxicity. GP stopped our dads B12 and he has enlarged blood cells and it was ignored. He has strokes and private tests showed both elevated MCV and homocysteine.
List symptoms when not on injections and write that if Dr stops injections that they are responsible for the consequences. If you have family history write that in the letter. Ensure you state file letter in your records. Patrick Holford writes about impact of high homocysteine
patrickholford.com/advice/h...
B12d.org charity utube talks
youtu.be/JriH4wEOz4k?si=AVD...
Join the b12d WhatsApp support group
patrickholford.com/advice/h...
B12d.org utube
youtu.be/JriH4wEOz4k?si=AVD...
Join the b12d WhatsApp support group
The standard advice is not to measure B12 once replacement therapy has commenced. Or that's how I interpreted it.
It's wasteful of NHS resources, as we perform quite sufficient Serum B12 tests already.
Perhaps I've misunderstood this.
I'd look at very recent FBC (full blood count) and folate results (often done alongside a B12 test). Also worth checking liver and thyroid enzymes and iron panel including ferritin.
See if there's any suggestion of anything else being out of reference range or within range but low or high.
Did pre-treatment bloods definitely show a B12 deficiency? What was that level?
NICE guidance is not to retest B12 once on injections as blood levels don't show what B12 is getting to each cell and it is known that B12 has some unusable forms called analogues..... But a lot of doctors don't have a clue about that.
It may be that bloods show something up that is preventing the body from using the B12 to make healthy new red blood cells cells ... Commonly, insufficient folate (easy and cheap enough to buy over the counter without battling with doctor).
I had a doctor who told me when my levels evened out that I was cured. I asked her how PA could be cured and reminded her that injections were for life, which she reluctantly agreed to. She continued to argue with me that I no longer needed injections because my b12 was too high. She also insisted that my ferritin at level 10 (range 9-120 with 60-80 being optimal) was fine. I finally switched to another doctor who ran every single blood test you can think of and was appalled that the first doctor had let my iron get so low. Dangerously low, to the point I needed to be scheduled to two emergency transfusions. She also told me she didn't know much about PA and was willing to learn. Needless to say, she became my new doctor. If your doctor is too stubborn to learn about PA (which they clearly know nothing about) then it's time for a new doctor.
I also get my b12 from Canada (I'm in the US) and my syringes from Amazon so I can self inject. If my doctor were to tell me my b12 was too high, I'd continue self injecting and find a new doctor. My health is more important than their ego.
I can't find the original report - Dutch, I think - but look up "B12 has been shown to be safe for over 50 years" or similar wording.
If you still have megaloblastic anaemia you still need B12
If you've got adequate B12 and folate levels then the megaloblastosis will resolve at a bone marrow level in a few days, and clear in four months.
So you need to ensure a continuing supply.
Absolutely!
How do these people qualify when they can't see the difference between a cure and management of a condition. Your doctor shouldn't have tested B12 for someone who is injecting. Don't be bullied into stopping. Easier said than done, I know.
Ask your doctor what they would do if you presented with cyanide poisoning.
If they know the answer, it is that they should treat you with amounts of B12 unimaginable to somebody just being treated for PA.
”The recommended dose of hydroxocobalamin is 70 mg/kg (5 g). A second dose of 5 g should be given in case of cardiac arrest or persistent cardiovascular instability. Doses of 2.5 g have been shown to be insufficient to avoid neurological sequelae.”
journals.lww.com/euro-emerg...
Then ask how that squares with their baseless ‘toxicity’ claim.
That is so good, saving that to my notes for the inevitable conversation I’m sure I will have one day.
A haematologist also said that my high B12 would be dangerous and damaging to my health long term. I argued that my B12 treatment has saved my life. I refuse to be ‘gaslit’ by any doctor ever again. To this day I still cannot understand why a specialist in blood, could say that high B12 is toxic.🤷♀️🤷♀️
When will GPs take time to understand pernicious anemia. I took it upon myself to self inject Every other day until my sensory neuropathy in my foot improved.My GP went Bonkers and told me I would suffer hypermania
🤣🤣🤣🤣🤣🤣🤣🤣🤣
Hypermania from laughing at his foolish idea? Sure!
Sad and mad! Ignorance and arrogance beyond belief.
I've been daily SI for 9+ years with 1.5mg B12 and I still continue to improve, despite other conditions worsening and getting older!
Other people have been SI daily for decades to good effect.
Wedgewood puts it perfectly, as usual!
B12 is used, in very large quantities, to flush out toxins from the system when a patient needs emergency treatment. This is what you will find out if you google "B12 and toxicity". This is safe to do because B12 has no known toxicity level.
The reason I did this in the first place was because one of the nurses involved in administering my B12 injections as per GP request admitted to me that she had done this, out of concern that she was overdosing me ! The GP had requested EOD B12 injections - although I only got 2 injections a week as the nurses were too busy - and some of the nurses, having never heard of this frequency before, were worried. This nurse, however, once she had checked for herself, was more than happy to do as the GP requested. My improvements from then on were obvious to friends, family, employer, work colleagues, my delighted GP .... and most of the nurses. The others I avoided. My GP regularly monitored my folate ferritin etc - but never tested my B12. "Pointless." She was acting, in this treatment, on the advice given to her by consultants in secondary care.
I obviously have a very high constant B12 level. My Oral medicine consultant on seeing blood test results was worried initially, as he said "How do I know whether this sky-high level is increasing, since it is above our measurable amount ?" Fair question. He wanted me to gradually reduce my frequency, with the help and monitoring of my GP. Next time I saw him, he told me "I have completely changed my opinion, since discussing your case with colleagues. Don't reduce your injections - your body needs that amount to work properly. Don't take tablets either - they won't work for you."
These are anecdotes and will not change your GPs opinion. It would be fair for your doctor to provide proof of this B12 toxicity - a research paper from a reliable source, an article from a medical professional in a medical publication perhaps. There are none that I've ever seen.
If you check medical guidance documents, they advise against testing b12 levels after injections have started. These are written specifically for the medical profession and so it would be reasonable to expect GPs to explain their reasoning, if they are intent on going against this advice.
NICE (National Institute for health and Care Excellence), BNF (British National Formulary), BCSH (British Committee for Standards in Haematology) guidelines.
I wish you luck.
If your doctor worries that too much B12 is toxic, show them this study on ALS & B12
Side effects or toxicity?
B12 stopping injections 
B12 injections - what next?
