B12 overload on the liver: Following... - Pernicious Anaemi...

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B12 overload on the liver

Paula1710 profile image
27 Replies

Following on from my last post

My GP has just seen me. He did a basic Neuro exam He said he checked his guidance and stated I can have B12 injections every 8weeks but today he gave me an injection 6 days early to see if it eliviates my symptoms.He typed a letter ready for me to go to see the Neurologist on Thursday.

He stated on the phone call this morning that he would not do the loading injections again as he has read a paper that states overloading with B12 means excess is stored in the liver and can cause damage.He said my B12 levels on 7th October where 686within normal range and injection today (7 days later)should mean I have ample B12 now?????

He said he would wait and see what the Neurologist says?Has anyone ever heard of what he is talking about?

The only blood test I haven't had for PA/B12 deficiency is MMA.Homocysteine,parietal cell antibody and IF x4 are normal. Active B12 was normal in August when tested.

Functional B12 or something else I wonder?

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Paula1710
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27 Replies
Nackapan profile image
Nackapan

No I've not heard that.

your level isn't that high either.

Glad you have a referral and got a b12 injection today.

perhsis PAS knows the answer

VellBlue profile image
VellBlue

Point 5 and 6 on this Dutch B12 deficiency info website may be worth reading:

stichtingb12tekort.nl/engli...

Paula1710 profile image
Paula1710 in reply to VellBlue

Thanks for that.Interesting

VellBlue profile image
VellBlue in reply to Paula1710

There's also this referenced info leaflet on the PAS website about testing B12 levels during treatment. Good to share with your doctor.

pernicious-anaemia-society....

Pickle500 profile image
Pickle500

Have heard it all before. GP's are very nervous about risk of 'overdose' and this is compounded by their lack of training in medical school on the basics of nutritional health including B12 and folate.

They know how to spot the signs, but they don't actually know anything about the mechanisms.

So instead they make stuff up like this. You cannot overdose on B12, your body won't allow it. B12 is constantly circulating in the body and has a very complex absorption process starting in the salivary glands, stomach and intestines. And that's because it's an extremely vital nutrient.

Unfortunately, GP's receive no training in this. Also, specialists suffer from lack of training too. That's probably because B12 causes systemic breakdown in the body from blood to nerves to bones and emotional health. This contradicts all accepted medical training which delineates body parts so that specialists can investigate.

But what if you have gastrointestinal issues AND palpitations AND nervous system disorders? Who would you go to then?

There isn't anyone. So it falls through the cracks.

I'm sorry to say but GP's will not give you the help you need after you've first been diagnosed and treated. They don't know where to go from their and assume that an 'in range result' means anything else you inject is placebo.

But they're wrong. And they're wrong because they don't understand what they're dealing with because they haven't been trained in it.

Shocking, but true.

Pickle500 profile image
Pickle500 in reply to Pickle500

Just to add that there is a paper that suggests high B12 levels can indicate a problem/damage to the liver.

ncbi.nlm.nih.gov/pmc/articl...

But this is not the same thing as ingesting high levels of B12. We can't use it the other way around, if you know what i mean?

Excessively high B12 levels without supplementation could suggest a problem in the liver. But you do not have high levels. You have 'normal range levels'. Plus, actively getting levels high does not necessarily mean it will damage the liver. It's just that high levels on blood serum tests can suggest liver damage.

Unless you are a proper alcoholic or have other conditions that affect the liver then it's a nonsense.

Hope that is helpful.

in reply to Pickle500

hahahahaha a classic example of let's twist this fact and rely on our patients being imbeciles and unable to understand this paper if they read it. They'll never think to Google it! Because they are all idiots aren't they? Aren't they?!?!!

B12life profile image
B12life in reply to Pickle500

this is precisely the right answer!!! It's only a problem if your b12 was way high before injecting or taking high doses. but it will always be high if you inject. There are medical journals that talk about this. I have learned if the doctor gets it wrong, I don't try to educate because they won't listen. I RUN!!! Get to one that is willing and smart enough to listen. I did arm myself with all the info from the various medical journals from PAS so that if I encountered a doc or pharmacist that gave me resistance with false information, I could answer it.

wedgewood profile image
wedgewood

Please ask your GP the name of the paper that he read about excess B12 being stored in the liver and causing damage . We need to know about this information!

I have read that there is a condition that causes high levels of B12 to be stored , indicating a health problem , but it has nothing to do with injecting or taking other forms of vitamin B12

Paula1710 profile image
Paula1710 in reply to wedgewood

i will write it down and ask him.Talking to him next week will post answer

wedgewood profile image
wedgewood in reply to Paula1710

That would be great if you can . Thanks .

Technoid profile image
Technoid

If your body stores of B12 are replete and you receive injected B12, the excess that the body does not need will be cleared in urine. If your cells are B12 deficient and/or your liver has not reached capacity for B12, the B12 will go where it needs to go in your body and/or be stored in the liver reserves. Having excess B12 (higher than the blood's binding capacity) sent to the liver, to top it up, is not a bad or dangerous thing. If the liver has reached capacity for B12 the excess will simply be cleared in urine. There is zero evidence that regular high doses of B12 cause liver toxicity in any way, shape or form. There is no toxic dose of B12 and no tolerable upper limit, although ElleNore has been trying to test that for us 🤣🤣. Whatever paper your doctor has been reading is either wrong, or he's interpreting it wrongly. Why is it so difficult for doctors to understand that B12 is not toxic in excess?

Paula1710 profile image
Paula1710 in reply to Technoid

Thats good to know thanks for that

Technoid profile image
Technoid in reply to Paula1710

The old chestnut of injecting just to get you into a "normal range" of B12 is total nonsense also. Measuring B12 after injections to judge the efficacy of treatment is misguided . It is well understood that neurological symptoms can return with B12 values in the normal or even high ranges. Once a B12 deficiency has been found, regular treatment should should continue at a rate that is improving symptoms for the patient, regardless of lab values, which for neurological damage is every other day (until no further improvement) in the UK or twice weekly in some European countries. Ask your doctor to read NICE guidelines, they are there for a reason.

Paula1710 profile image
Paula1710 in reply to Technoid

My GP only gave me 6 loading doses then 1 injection every 8 weeks..Won't do it more often unless neurology state that so going Thursday to try and get that in writing

EllaNore profile image
EllaNore in reply to Technoid

Hahaha I did put it to the test. I accidentally injected about 27 days worth of methylcobalamin in 5 days. I got Insomnia pretty bad, got a bit jittery and felt overall crappy for about a week. But after that wore off, I actually turned a corner in my recovery. My very painful foot is 90% pain free. My brain feels much more clear. And Im on day 4 without an injection, where I was injecting every day. I don't know, but I feel much better these days after my little test. There is a difference in methylcobalamine, to cyanocobalamine. I almost feel that a good loading dose of methyl to get things started and maintain with Cyano could be something good. Methyl is pure and doesn't have to be converted in the body. But not everyone can tolerate it even with the correct doses. 😂 I'm proof you cannot OD on B12. You can get a headache and insomnia though. But that is probably just because it was methyl. I bet I could have taken the same amount of Cyano and not felt badly at all. Methyl is darker and a little thicker than Cyano and pure. But it really works.

in reply to EllaNore

well, would you believe it ! Bad few weeks overdosing

one week recovery now 90% better.

So glad you are on the mend.

EllaNore profile image
EllaNore in reply to

Right??? Thanks! I don't know what else to think. My symptoms are just better. I did have to inject today. I was not bad though. Just was getting a bit dizzy so I figure why wait anymore. 3 solid days with no B12.

jade_s profile image
jade_s in reply to EllaNore

Wow really happy for you! At least the misery amounted to something good in the end lol :)

now i'm tempted to try some methyl haha

EllaNore profile image
EllaNore in reply to jade_s

It can't hurt and it would be interesting to see what you think. My initial loading dose was only one injection a week for 3 weeks. Then once a month. So I never got the proper start. This kind of felt like thats what it should it have been like to begin with. But I can't get methyl ampules in the US. Just the powder form.

Gambit62 profile image
Gambit62Administrator

The PAS does produce a range of resources

pernicious-anaemia-society....

It also has a subsite aimed at helping medical professionals to improve diagnosis and treatment

pernicious-anaemia-society....

deniseinmilden profile image
deniseinmilden

You need to ask for the reference to the paper - I've been on here 8 years and all that time Drs have been telling scare stories but none of them can back up what they say with any evidence - actual or written - and that's not for a lack of requests for the information from us!

If your Dr can provide the reference, we'd love to read it!

On the other hand some people have been self injecting daily for decades and have only seen positive effects.

I have been injecting 1.5mg daily for over seven years and am still getting improvements, despite other health issues

In animals and people high dose B12 is used to cleanse the liver of toxins in some incidents of poisoning, which is how I know your Dr has got the wrong end of the stick - as would be proven if they found their article and re-read it more carefully!

Good luck with getting the treatment you need or go down the route of SI yourself.

I hope you feel better soon.

smg1950 profile image
smg1950

hi George how did you get your GP to do anActive B12 test? Mine do standard NHS which doesn’t show deficit though Active did so they won’t give me B12

Thanks

Paula1710 profile image
Paula1710 in reply to smg1950

My GP didn't do an active B12 test I paid for the test from Medichecks m

Dilly_blue profile image
Dilly_blue in reply to Paula1710

I have a functional B12 deficiency, and my last set of tests (privately paid for, through a private haematologist) showed ‘sky high’ active B12 levels, but also raised MMA levels. Homocysteine was normal. I am on 3-monthly injections with GP (but have neuro issues); and the test for active B12 was taken about 2.5 months after my previous injection. Anecdotally, my symptoms go away for only 5 days after an injection, then return. I am hopefully going to get an opinion of an (NHS) Metabolic disorders specialist (about the persistently raised MMA and symptoms) in the next few months.

If it was me, I would get an active B12 and MMA test privately ;)

Paula1710 profile image
Paula1710 in reply to Dilly_blue

Thank you for this info.Had my active B12 tested was normal.When I see Neurologist on Thurs will ask for MMA or get it tested with medichecks.

holyshedballs profile image
holyshedballs

Doctors are quick to say "research says" or "guidance says" without quoting the specific research or guidance. I always challenge them to quote the guidance, which frequently they cannot.

In any case, in my view, if there is a theoretical risk to the liver, I would ask the doctor what my individual risk is. The doctor should tell you your own "risk rating" based on your own circumstances. They often don't do this. The GMC says doctors have to treat patients as individuals.

I would say that I thank him for his information, and, having weighed up the pros and cons of his information and considered my own circumstances, I would prefer to be treated for an existing condition that is having health effects now, rather than a theoretical condition in the future that I may not experience.

I would suggest that I continue on my current course of treatment, and we will monitor my liver. If any adverse changes to my liver occur, we will reassess my treatment at that time.

if he doesn't, i would make a complaint about him.

It's too easy for doctors to refer to unspecified guidance to make their work easier for them, when they should be putting the extra work in for each individual patient.

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