B 12

[debbs28]

Hi I'm new here . I have cfs/me . Which I thought meant that I would have low b12 so like the other post my blood tests said I was 900 over . But what they don't understand if I go below 2000 mg daily I get cold. Grumpy and simply cannot function. Should I continue to take these . Also I would love to take more but should I, any advice would be gratefully received .

[clivealive Forum Support]

Hi debbs28 if you are feeling the benefit from supplementing with the B12 then continue to do so as you cannot "overdose" on it and any excess is excreted via your urine.

Read the article below:

stichtingb12tekort.nl/weten...

Personally I use a methylcobamalin spray - four squirts each day - this in addition to my three weekly injections of B12

I am not a medically trained person and I wish you well.

[debbs28 in reply to clivealive]

Thank you for that , I always presume blood tests and doctors are always right , but lately with this illness and been to Sutton hospital twice and still not getting any real support I'm just researching and sorting myself out .

[Sewsie1 in reply to debbs28]

Hi I’ve got ME and it’s a DIY illness. Even though taking oral supplement for years, I was low in B12 but not low enough to get NHS treatment B12. I now follow Dr Myhill and she suggests B12 injections and after 6wks self-injecting (a daily loading dose, then 2 weekly) I am much improved in my brain and recover quicker from activity. I think this might take some time as I’ve been ill for 25 yrs.

I’ve included a link to another site which has excellent advice about recuperation and pacing yourself

drmyhill.co.uk/

me-cfs-treatment.com/

Best wishes

S

[debbs28 in reply to Sewsie1]

Thank you for your reply . I'm sorry to hear that you've been ill for such a long time. I've been on to there and have read some bits. I have a book of Dr myhill but find it a bit hard to fathom . But will persevere and look into injections .I did try patches once but they didn't work. It cost too much .

[Midnight_Voice in reply to debbs28]

Do not presume doctors are always right!

I spent 20 minutes clinically dead after a misdiagnosis, and you can’t get much more wrong than that.

(Well you can, but it doesn’t bear thinking about).

NB: It wasn’t a PA-related thing, by the way. PE.

[fbirder]

No. Being diagnosed with CFS/ME does not mean that you have a B12 deficiency.

People with a B12 deficiency are often misdiagnosed with CFS/ME - and will respond to B12 treatment. But many people diagnosed with CFS/ME do not have a B12 deficiency and do not respond to B12 treatment.

If your B12 tablets remove the symptoms, then keep taking the tablets.

[debbs28 in reply to fbirder]

I have to say you are the first person who has actually told me that b 12 isn't linked to cfs/me . But I will keep on the b12

Many thanks

[Sewsie1 in reply to debbs28]

Sorry I should have said that B12 deficiency isn’t the same as ME/CFS but it’s good to have a blood test to rule it B12 out. I did have a blood test but have been taking supplements so my B12 was low but in normal range - I think it was a false reading as I also have other B12 symptoms. Definitely worth taking if it makes you feel better - best wishes

S

[fbirder in reply to debbs28]

Some people diagnosed with CFS/ME do respond to B12 injections. ncbi.nlm.nih.gov/pmc/articl...

But these people could quite easily have been misdiagnosed - martynhooper.com/2018/02/10...

I would say that a positive response to B12 injections means that the original diagnosis of CFS/ME was wrong. But doctors might disagree (although I'd love to hear their reasoning).