Pernicious Anaemia Society
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Help with self medicating

Hi All

I would really appreciate some help as I have started to self inject again.

I started to self inject January 2016 as experienced severe confusion, had onset episodes of this, literally didnt know what I was doing. Blurred vision (night time vision worse), breathless, heavy legs (on and off) extreme fatigue, bloated stomach, no appetitie but when I ate a small amount I felt full up.

When I started, I was a different person, literally could run again, work, went to the gym, could walk, it was amsing!

But couldnt afford to carry on with injections so went to GP to tell him of my amasing findings, I felt that I needed to continue, had deteriorated since stopping.

He didnt take me seriously, put has hand over his ears when I was trying to tell him what i had been doing and that hadnt supplemented for 3 months. My levels were 2000, he was obvisouly worried and investigated further to see if liver, kidney etc were ok. All came back fine.

I went back again in January, all same symptoms except my legs have become very very heavy, dont feel part of my body. Still wouldnt give me injections, levels had gone down to 900.

Over the past few weeks my symptoms have come back with avengence so have scraped together enough money to see a private doctor locally who also treats my hasimotos. I started loading doses every other day until further improvement. However, my question is, as my NHS doctor has refused to give me any more blood tests (doesnt like the fact that I go in asking for certain tests) how will I ever know if my folate level is low? Hes never bothered to test this when testing B12 and I cant afford to have the test privately. Will it be okay to supplement with folic acid and how much would you all advise?

Thank you

3 Replies

not generally a problem supplementing with folic acid - 200/400mcg daily - can get in most supermarkets.

1 like

Medichecks finger prick folate blood test is £39 but they often have discount codes around 15% off if you keep an eye out. Obviously I don't know your financial situation but if you can wait and get it nearer £30 it'd be worth saving for if it's something on your mind. At least you'd know definite then and could show them to your gp :) I had it done on tests with blue horizon and medichecks and it came back low so my gp prescribes folic acid.

Before I got my medical exemption card (Hashi's too) I tried but wasn't able to buy the strength she prescribes OTC. So if you needed it the money you'd save on having to buy the supplements should eventually outweigh the £30-£39 test fee :)

Can I just ask how often you were self injecting? It's something I'm considering but don't know where to start or if I should wait till I'm on a stable thyroxine dose :-/


Hi there, I would say one of the first things you should consider is to change your Doctor. Find one who will be sympathetic to your needs. PA has so many random symptoms and it can make people feel very vulnerable. A good doctor needs to listen, to be open to hear what the patient is telling them. I know there is an issue with time management which is not down to the Doctor but people should not feel they are being fobbed off or talked down to when they are seeking professional advice/treatment at a time when they are not functioning at 100%. I hope you are able to find a doctor to assist you in getting your symptoms under control. It's a long road when travelling alone. Take care :) x


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