B12 level 163

[louis1877]

My B12 level is163 and I have a lot of symptoms including burning sensation in my hands and feet fatigue breathlessness ringing in the ears anxiety and depression loss of appetite vertigo balance problems and dizziness heart palpitations and muscle twitching and pins and needles but my doctor said I didn't have a deficiency and I was just borderline I don't know where to go from her I literally do not have a life I'm just about holding on if there's anyone who can give me some advice our point me in the right direction it would be very much appreciated I had my blood test at the end of February so have been left since then and had no help from the doctors and i feel like my symptoms are progressing

[Silverfox2]

From what I understand (and I'm new to this too) anything below 200 is deficient and so you should start on a course of B12 injections until your symptoms cease. Apparently If any nerve symptoms are left for too long (ie over 6 months or so) you may end up being stuck like that as It seems I have. So go back to your GP and demand help. That level is NOT borderline.

[louis1877 in reply to Silverfox2]

Thanks for your response it's been an absolute nightmare with my doctor's I have spoke to other doctors at the surgery and they just don't want to know because my level wasn't under 150 I present myself with all the symptoms and them knowing that my b12 is low you would think they would do something about it but getting nowhere with them

[Silverfox2 in reply to louis1877]

Well point them to NICE's recommendations then. Your level is far, far too low. Mine was 170 and even my useless GP thought it couldn't be left like that.

[wedgewood in reply to louis1877]

Simply outrageous not to be treated for B12 deficiency with your symptoms AND a low B12 reading . Up to 80 % of that reading can consist of B12 which cannot be used in your cells . SYMPTOMS SHOULD BE TREATED , NOT BLOOD TEST RESULTS . If you are not vegan , strictly vegetarian , do not take B12 nullifying medications like PPIs , metformin etc , do not have fish tape worm , abuse nitrous oxide, you should have an IFAB test , ( intrinsic Factor Anti Body test );This is a tricky test , as in about 50 % of P.A. patients , the test comes up negative . So a negative test doesn’t prove you don’t have P.A. , but a positive test does prove P.A. B12 is a very cheap injection . A self -injection costs me about £1.60 . Everything included .

You should be offered a trial of B12 injections , and if your symptoms improve , continuing injections .

That doctor is endangering your health . Change doctors if don’t receive treatment . Best wishes .

[LilacTrees in reply to wedgewood]

Could I ask where to buy self inject B12 and how do I determine the correct dosage thanks you

[wedgewood in reply to LilacTrees]

I’ve sent you some information by private messaging

[wedgewood in reply to LilacTrees]

You need to inject 1 mg ampoule as often as required to keep B12 deficiency symptoms at bay which can be anything from daily to Once every 3 months . We are all different and have different requirements of regularity .

[LilacTrees in reply to wedgewood]

Thank you

[Luna202128 in reply to wedgewood]

You mean 1 ml

[wedgewood in reply to Luna202128]

No . I mean 1 mg . 1 mg is the usual dose of an ampoule of B12 . Rotexmedica , which I use, is 1mg in 1 ml of saline . Hevert is 1mg in 2 ml of saline . . Pascoe make an ampoule which is 1.5 mg in 1ml , but this is unusual . 1mg is the most usual dosage ,

ml is a liquid measurement , — mg is a weight measurement .,

[Luna202128 in reply to wedgewood]

Sorry, thanks for clarifying this.

[louis1877 in reply to wedgewood]

Thanks for the info very much appreciated I will be changing my doctors I will never forget what my doctor told me he said to me there was no cure for dizziness and didn't acknowledge my other symptoms and I had to live with it so I've been going out of my mind questioning it is it my b12 or is it just me but everything I am researching and all my symptoms come back to b12 every time may I ask for some information about where to buy b12 injections thank you

[wedgewood in reply to louis1877]

Where to obtain requirements for self-injecting VitaminB12,for Pernicious Anemia patients /B12 deficient patients .

Certain German online pharmacies can supply U.K. with B12 ampoules , because no prescription is required in Germany for this harmless vitamin , which cannot be overdosed , no matter what your doctor might tell you .

Since Brexit on January 1st when we withdrew from the single market , it has become more difficult for online Pharmacies in Germany to supply us, as they have customs documents to deal with and have to organise VAT payments for HM customs etc. and some pharmacies have given up supplying U.K. .

bodfeld-Apotheke.de Site is in German , so you may need to use a translation app or use Google

Chrome . Courier charges €9.89, no matter how many you buy -BODFELD now insist on U.K. purchasers paying by Bank Transfer . O.K. If you have mobile or online banking ,otherwise a trip to your bank and payment for the service .

apohealth.de You can get this site in English by clicking on the American flag on the top right of 1st page . Postal charges .

Amazon.de ( German Amazon) can sometimes supply , depending on which pharmacy is supplying the ampoules . So you may need to trawl through different suppliers .

Needles , syringes , swabs and sharps boxes ( for disposal of needles ) can be obtained from

medisave.co.uk

Needles can also be obtained from

exchangesupplies.org

I use Rotexmedica B12 depot. These are single use ampoules 1mg x 1ml Hydroxocobalamin, as is used in the NHS .

apohealth.de You can get this site in English by clicking on the American flag on the top right of 1st page . Postal charges .This pharmacy sells b12 ampoules with a one year use-by date . So remember that when you order . It’s more to get 2years .

Needles , syringes , swabs and sharps boxes ( for disposal of needles ) can be obtained from

medisave.co.uk

Needles can also be obtained from

exchangesupplies.org

I use Rotexmedica B12 depot. These are single use ampoules 1mg x 1ml Hydroxocobalamin, as is used in the NHS .

Hope that this helps

[louis1877 in reply to wedgewood]

Thank you for the information I will look into this

[Lynnetod in reply to wedgewood]

Absolutely, with low B12 you have low stomach acid, the PPI wiped out what I had left. I couldn’t walk, had to have a commode because I couldn’t get to the toilet. Strange symptoms, cobwebs on my face, the feeling of wax being poured over my head, loads of stuff. Passing out, it was awful.

[Hidden in reply to louis1877]

Have you informed them of all the symptoms,Dizziness pins and needles etc. , they know your b12 level is low therefore they SHOULD be addressing this with b12 injections. Write to them (keeping a copy) list all your symptoms and want them to take action.

Good luck.

[louis1877 in reply to Hidden]

Yeah I absolutely stressed my symptoms to my doctor but he did not acknowledge them he just put it down to a vitamin d deficiency which I've been been taking vitamin d supplements since February but see no difference with my symptoms so I'm pretty sure it's not vitamin d and thank you for your suggestion

[Lynnetod in reply to louis1877]

Speak to your pharmacist ASAP, do you take any PPI for acid reflux, they cause havoc and exacerbate symptoms

[PointOfReference]

Sorry to hear your distress.

I wonder if its worth taking yourself to A&E based on your last worst symptom, e.g. burning sensation keeping you awake all night, or you had a fall from dizziness, and tell them your B12 levels aremt being treated.

This way, even though A&E may not have a solution they can at least mark your medical records. Then go back to your GP to chase them up and say you had no other choice but to seek emergency help due to the impact on your life.

You can't be left without any treatment. So explain to your local A&E and hopefully that will jolt the GPs into action.

If you're stuck, maybe try to change GPs

[louis1877 in reply to PointOfReference]

Thank you for your suggestion I think this will be my next move as I'm not getting nowhere with the doctors it's disgusting how they can leave me this way just because I didn't fall blow 150 it's ridiculous

[PointOfReference in reply to louis1877]

Do come back and share how you got on. Sometimes its down to luck but neurological symptoms are taken seriously at hospitals. They may do an CT scan and do blood tests - probably not including b12 - and it will go on your medical record.

Then contact your GP to highlight the urgency

Hope it works

[louis1877 in reply to PointOfReference]

I will do and thank you again for your suggestion seems like the only way forward it's been an absolute nightmare just want to get to the bottom of things and start the recovery process

[PointOfReference in reply to louis1877]

One other option is to pay for injections. You'll need evidence of your diagnosis from the doctor, but you may need to pay for injections if it comes to it. Superdrug do them for 30quid.

[Bonjourtristesse in reply to PointOfReference]

Some clinics will do them without test results. There is a chain of vitamin clinics called Reviv that will do this.

[louis1877 in reply to PointOfReference]

Yeah as Bonjourtristesse mentioned there's a place called Reviv that do b12 injections I'm going to give them a call Tuesday morning and try and book in for a injection just a bit worried I might mess up future blood test with my levels being raised from me having the injection because I'm pretty sure if I was to have a blood test now I would have dropped even more just trying to get the doctors to give me another blood test or they finally acknowledge that I do have a deficiency from my last blood test

[Bonjourtristesse in reply to louis1877]

There are also private tests you could do before injection or you could try and get them to test before injection.

The thing is that if they're like mine they will keep testing you after injections (despite repeated requests not to) and then tell you that your levels are dangerously high.

[NZnative]

You may some helpful answers here.....undiagnosedvitaminb12defici...

[louis1877 in reply to NZnative]

Thank you

[Ernest2]

Shame on your GP.

I think they only use the 200 limit because some UK GP only consider permanent damage risk, not functionality.

Myself I want more than 400 to be sure (but don't go mad for big numbers). Before I had a problem I was around 600 (my problem caused by chemo)

You can now buy good sun-lingual sprays (methylcobalamin ones are stronger dose to get you back on track) from high street chemists. Surprised your GP does not know that. Bit of a worry.

What your GP must provide is the testing so you know you get the supplementation right. Also they should have investigated to know why you have an issue.

Silly question - are you on a vegetarian/vegan diet. I'm not but I have to thank an expert vegan for helping me sort my B12.

Good luck and may the pester power be with you (keeping it as polite and friendly as possible). You have to guess GP have a lot of silly behaviour because of being lent on by the bean counters -we can only guess.

Wishing you well soon,

Ernest

[Mewsmom]

My B12 was 145 when doctor said I had PA, two & a half years of having B12 injections later, I'm told I've never even had PA ..... because I've never had stomach surgery or Crohn's type condition, as readers on here know, I've put a complaint in about this.....still waiting for the outcome of that, sadly because a lot of medical people still! being ignorant to the whole B12 thing I'm not holding my breath that my complaint will be upheld......in the meantime I'm on tablets feeling like rubbish to put it mildly.....but good luck with your B12 battle.