Pernicious Anaemia Society
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Symptoms returning despite self injecting every other day - advice please

Hi all

Not posted for a while as now very, very poorly with adrenal insufficiency. Oh God, will it never end?

I had a late diagnosis with neuro symptoms and the doctors refused to diagnose (though finally have). However, decided to self inject every other day, which I have doing so with methylcobalamin for last few months. I have also been taking 10mg of amitriptyline every other day and all seemed well under control. However, the last couple of days, noticed the odd bit of pins and needles returning. And this evening, my feet have started to burn a bit (doing it now) with pins and needles, the worst it has been in months. My tremour is also worse.

I am so, so worried. I am so ill at the moment and thought my B12 was under control. This is just so awful and I am in despair.

Please, please advise...

2 Replies

Dear babygodmother ,sorry to hear that you are so unwell. The first thing that springs to mind, is, are you getting enought folate/folic acid? The B12 can't work properly without sufficient folic acid, So if I were you I would get some immediately. Amazon is a good place to get it. Don't despair. I'm sure that there is a way round this 'blip' So first of all try supplementing folic acid! With very best wishes to you.


Hi there , I m sorry you are feeling this way , I ve been there. Wedgewood is correct in advising you to take folic acid regularly. If you are diagnosed with PA , folic acid and iron is usually prescribed along side vitb12 injections. I have found that methycobalamin alone doesn't help with all the symptoms in the long run. You require adenosylcobalamin as well. This is why hydroxocobalamin is used as it is converted to both methycobalamin and adenosylcobalamin in the body.

It is possible to have problems in the different conversion pathways. ... our doctors and specialists should be engaged in this and providing proper treatment for all who have this condition or syndrome. It is negligence to allow many to suffer in this way and having to find what works for them in this way, when we are in such a vulnerable state. If you can find sublingual adenosylcobalamin, start taking some, otherwise alternate methyl and hydroxocobalamin injections. Optimise folate and take a good multivitamin daily. I hope you start feeling much better soon. Sorry about the rant. I am extremely angry about the primary-care blindness in this area. Xx

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