Hi all, I have been to see the haemotologist this morning and he has suggested I see a neurologist so I am no further forward with a diagnosis, I have had bloods taken 8 phials in all. One of the tests was for b12 and I showed the supplements I have been taking which he made a note of. I have to go back to see him in a months time. The reason I asked about saline was because I wanted to buy methycobalamin which is not already mixed. I have also got cyanocobalamin 3 mg which I thought I would take for the next 6 days to load up b12, but I read another blog that said the methyl was better. I don't know what to do now. The supplements I have been taking have helped to get me through the day but they are proving very expensive. It was pointed out that t?hey obviously not working but I said it could be that I haven't got enough b12 in my system to work on. HELP.

5 Replies

  • Different people find different formats of B12 work better than other for them but it varies from person to person. I find hydroxocobalamin works best for me with psychiatric symptoms but methyl works best for me with neuro so I use a mixture of the two.

    People vary very much as to how much they need as well.

    I supplement using nasal spray mainly and yes it is sort of 'expensive' as I get through a lot (and I know my GP isn't going to give me shots any more frequently than once every 2 months - so its costing me about £1 a day but compared to not being able to work and losing money as a result it's actually very cheap - though I know that doesn't really help when you are struggling to pay for stuff on a limited income and it is the system that is daft but hang on in there if you can.

    Hope that you get a proper diagnosis soon and that the supplementation hasn't screwed things too much. If they took 8 phials then they are obviously looking to a lot of tests which may include some like MMA and homocysteine that might back up your body not using B12 properly even if the serum B12 comes back high.

  • Hi Gambit, thanks for your reply, I understand what you are saying about the various types of b12 and at the moment I am taking 3 x cyan 1000 ug from goldpharma and up to 20 methyl 5000mgu which dissolve under the tongue daily and it is proving very expensive and I can't sustain it financially,, but they are getting me through the day. I'm still breathless and get the fogs etc which is why I thought I would try the injections for the first few days to see how I go. I just feel I have no quality of life and I'm either fighting my doctor to listen to me and when I do get appointments I seem to wait an age. Sorry to you or anyone else reading this for going on it's just hard when your fate is in someone else's hand and you are bound by it. Have a good weekend.

  • I know where you are coming from. I felt awful and was going backwards before I started treating myself (thank goodness B12 isn't toxic and overdose isn't an issue). I suffered decades of depression and really didn't feel I wanted to go on until I got the doses right. Sure I would have killed myself if I hadn't

  • Hi,

    Glad you have been referred to a neurologist, and that the haematologist obviously took you seriously to do all these blood tests! The hardest bit now will be the waiting for results and the neurologist appointment. Hope it all will be soon for you.

    As Gambit already said different people prefer different B12 preparations, it all depends. Yes injecting is far cheaper than other forms of supplements. Its up to you what you try. Keep in mind that particularly with methylcobalamin folate is required. But if I were you I'd wait until you have seen the neurologist. I did, had everything ready for self injecting but waited until I had seen the neurologist so he saw me at my worst.

    I hope this helps,

    Kind regards,


  • Hi Marred thanks for your input. I have a lot to think about. He didn' tell me why I was giving so much blood. I obviously know that two of them were for fbc and b12. Kr Mazza

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