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Myalgic Encephalomyelitis Community
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B12 1500

Anyone has had B12 level of 1500 and using a b12 spray and has had injections with that level? I think I am B12 dificent but using a B12 spray for over two years as I have ME/CFS. The neurological issues and cognitive issues are getting worse and now my vision and hearing is effected.

Doctor won’t give me injections because my level too high. I tried explaining that the B12 could not be going into the cells but he won’t listen.

My homocysteine level is high too.

I have stopped the B12 spray now the last few days for a true reading but it takes four months to get out of your system.

The doctor says I need anti depressants!!!!

Need advice.

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Hi there Julie nice to meet you. I was just reading your post I also have b12 deficiency I have M.and fibromyalgia as well. I have noticed my vision and neurological symptoms are getting worse mine is my left side and memory is terrible. I get terrible migraines and left side numbness to the point they thought I had a mini stroke at first as my face also drops . I’ve been under St. George’s in tooting in the past for the pains in my head / migraines they actually found I have 3 cavinomas (Enlarged vessels within) my front temporal and the centre of my brain. ( I’ve been told it’s all part of the conditions basically)

It’s very strange how a lot of us have similar symptoms but not a lot of answers and it can be a very lonely workdbut believe me your not alone. I just wanted to say I have my b12 once a month as injection and like you I do notice when I don’t have it or how it effects me I do feel for you and I just wanted to say your not alone my advice is you know your body. And keep on at those who are trying in a way to help but I think these conditions are very hard as there is not enough knows as each case can be different and the same as others if that makes sense.

Please don’t take antidepressants if you don’t need them I think we end up low due to the illness and feeling helpless and as if no one is listening or helping I know I am now on the antidepressants and I truly wish I hadn’t done if I knew then what I know now I’m not saying they haven’t helped but depression comes due to your life changes due to the illness. I’m sorry this is long but brain fog and I know what I’m trying to say lol. Message anytime I try and check I hope you get some sleep.

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Hey.

So sorry your GP is going down the depression route. It's so very frustrating. I went through the same with a neurologist before Christmas and it really brought me down.

I'm intrigued by b12 jabs too. Unfortunately, at least according to the ME association purple book, the evidence for b12 injection is still largely anecdotal and survey based at present and not formal clinical trial based, therefore the nhs won't support it in the UK, you'd probably need to find a sympathetic private doctor like Myhill. It does reference this low sample size survey though

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

But it also flags up that Megadosing can cause patients serious harm though, so there is also risk, so please be careful.

For what it is worth, being vegan I was very surprised to find I have no b12 deficiency. I supplement with a high dose sublingual b12 and still have the symptoms you have.

Letting your spray effect fade then redoing your test sounds very sensible, if frustrating, as a next step.

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High homocysteine could be a deficiency in vitamin b12, b6 or folate. Have you been taking a b complex with high dose b12? The b vitamins need to be kept in balance. Taking one high dose b vitamin alone could knock out the balance of another.

Ps you would need a functional dr to prescribe b12 injections if you are high in the range due to your spray. Specialists told me b12 was non toxic.

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