Has anyone had very high B12 ? My B12 has been 2000 for years .. I have peripheral neuropathy which I was told 21 years ago was caused by low B12 .. had 12 weekly b12 injections and then they were stopped as my b12 so high 🤷♀️ I’m also on thyroid meds T4 and T3 .. I also have high ferritin .. My GP doesn’t seem to worry about it .. I have managed my PN all these years and at the moment have bad episode of neuropathy
I just don’t understand why my B12 is still so high with no injections or supplements for over 15 years ? My red cell count is also a little high xxx
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lynnwin
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maybe ask in a PA group as I’m sure I’ve seen there that when on B12 injections you shouldn’t have a blood test. And also that B-/ can stay high for many many years but not working
lynnwin , I would get that article printed out , and given to your GP. I have printed it out , as I find it such a revealing article which is important .
I don’t think so ? At the moment I have bad neuropathy which I had years ago when given the B12 injections as the cause .. since then I have a thyroid problem which I take levothyroxine and T3
I agree with 130396 I was told when I was having them to ignore the blood results but some other GP at my surgery stopped them .. I did know that it stays high for a long time if you’ve received injections but my body may need the B12 because of this PN flare and it’s just sitting there not being used 😞 xxxxx
It's difficult trying to explain neuropathy, it comes in many guises, I had to fill out a form for the pain clinic where you ticked boxes what sort of pain's i was getting ,and it also gave you a blank space to put your own " feelings or symptoms "I must have added another 10 to that list!!!
There is medication available for these horrible symptoms, pregabalin and mirtrazapine help, but they make you feel
" woosy" so it's best for nighttime, drinking alcohol and smoking are definitely NOT recommended .
I sympathise with your condition I've been like this for over 12 years, mine was caused through being an alcoholic and then ended up with B12 deficiency, my drinking was caused through a very traumatic incidents, and I never wanted to become an alcoholic, but I'm sober for well over 12 years now.
Sometimes if your B12 is bad and have other issues with being out of breath, it's recommended to take folic acid tablets, but only if your doctor prescribes this, best of luck!!!
Hi yes I totally get that plus everyone has different severity in symptoms .. mine was diagnosed 21 years ago and said Coeliac disease i wasn’t absorbing.. started having b12 injections then they stopped them as my b12 was at 2000 big mistake but my b12 still at 2000 with no injections or supplements.. I’ve just read that deficiency in B2 can stop b12 from circulating.. and I’m always deficient in b2 .. I have bad burning them prickling then pain .. I have never drunk alcohol just never liked anything 🤦♀️ going to my GP Friday to ask for lots of blood tests xx
Yes its a known fact people who have had stomach issues are susceptible to B12 deficiency, taking omeprazole on a long term basis, even chemotherapy and even having numerous general anesthetics all compounds this issue, I've had numerous problems with my stomach and lost count how many operations I've had, I really hope you can get something sorted, I totally understand where you're coming from, and even trying to find a cold spot in the bed for my feet becomes an issue, I think you know how " hot" feet can get, best of luck!!! X
Yes its a bit of a mission to find that cold spot,I hope you can get sorted out, keep us informed how you get on!!!And i know it's going to be a difficult process getting your point over best of luck 👍 😊 x
My B12 is currently >4,550. My Endocrinologist (Prof) said its is water soluble so I'm just 'peeing' it down the toilet each day (did not ask me to stop taking if it made me feel better). And it does. I start getting familiar anxiety (neuro-psychiatric symptoms) every third day at which point it is resolved with an injection. I put it down to some degree of demylenataion after years of being un-diaganosed with PA. Martyn Hoopers book also states - no harm from high B12 injections.
Wow 😮 but if your having injections that’s expected I think that’s where my doctor went wrong stopping mine as my result was 2000 .. I’m starting to think I should just have the injections or supplements? As my PN is bad and it’s so odd that every blood test for active b12 is exactly the same 2000 not a diget under or over 🤷♀️ I will look at the book thank you xxx
Tablets aren't very good for absorbing in that way, you need to go down the injection route, and also if you get back in touch with Wedgwood on here you'll find the option to purchase these injections, he is the" Bible of knowledge " and don't be scared of self injecting, there's so much damage been caused through lack of this vitamin, I know when I'm due my " top" up my muscles start to twitch, and get a deep rumbling sensation in my chest, and my eyelids flutter alot, you need to get something to avoid any further damage, doctors are just going by a directive from the area your are in based, it's used as a cheaper way to treat people with Tablets rather than injections and doctors don't listen to patients but look at a screen for results, hopefully you'll find a way out and get the correct treatment 😀
Ah so you're "Miss dracula " going around the ward looking for your next victim, whilst everyone is looking out the corner of their eyes hoping your not on the hunt for your " prey" 🧛🤣x
It sounds like while you have B12 in your system your body is not absorbing it. That you have it in your system is not in its self a problem as your body excrete any overload but more that it’s not being absorbed. I think you need to discuss with hematologist. As for neuropathy this can be caused by other issues besides B12, for instance diabetes.
It's to be expected that serum (total) B12 levels are high if on regular B12 injections.
High B12 without B12 supplements or B12 injections can sometimes be associated with a serious health condition.
I'm not a health professional but I would expect your GP to at least check liver and kidney function and to order a Full Blood Count and maybe other tests as well.
Maybe you could access your blood test results over last few years and look for patterns in the results.
Thank you I was diagnosed with B12 deficiency 20 years ago .. after going to and from consultant to doctor to doctor as I had bad PN .. The last private endocrinologist ordered some blood tests and he said your B12 is extremely low and being a coeliac the GP should have checked this so gave me a injection there and then and my GP did the injections every 12 weeks and it was one test for b12 they did and it was very high they decided to stop the injections
I’ve just had my bloods done and kidney ( I’ve only got one kidney ) liver all ok
FBC we’re ok apart from red cell count bring over range at 5.30 (3.8-4.8)
Haematocrit 0.45 ( 0.35-0.45 )
Mean cell haem (28.1 (27-34 )
Red cell width 13.5 (10-15)
The others in FBC ok apart from white cells a bit high and lymphocytes a bit high but putting that down to a bit of an infection I had . I was tested for PA had the shilling test
My ferritin is double what the top of the range is I asked for gene test for haemochromatosis but he just said you have t got that ? So no test I’ve got no inflammation and my ESR CRP are normal so that’s not causing high ferritin ..,I know there are more sinister reasons for both b12 and ferritin but it’s never been taken any further 😞 xxxxx
Their website mentions clinical guideline for haemachromatosis in UK.
Put "clinical guidelines" in search box on their website if you want to find them.
Might be worth searching online to see if your ICB in England (Health Board Wales/Scotland) has its own local guidelines on diagnosis/treatment of haemachromatosis.
I questioned how can he be sure that I have got HH ? He said the saturation would also be higher ??
It’s not an expensive test I’ve done a few as work in a GP surgery phlebotomist.
He said your liver is ok and that would be affected with HH ?
I have a FTF appointment on Friday with him and a list of blood tests I’m asking for .. my friend is very knowledgeable as she also suffers from PN and on thyroid meds the same as me .
Thank you for the links I will take a look .. I haven’t had a folate test for years either so that will be interesting?
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