Update on treatment

Thought I would update everyone on how the treatment is going.

I ended up in hospital on Monday night, I was feeling so ill that we decided to ring NHS 24 and they sent an ambulance straight away. The chest pains I was having I was putting down to the stress my body was under. However it soon came to light I also have a atrial flutter.

I attended my GP the day after for an emergency appointment as I was really suffering with the nuero symptoms and so far he was refusing to put me on every other day injections and was expecting me to wait until September for another.

Amazingly he finally agreed that I need the injections and I now have 7 up and coming every second day. so far no improvement but fingers crossed this all works! My red blood cells are still extremely enlarged and my folate is very low.

I'm just hoping the treatment can work!

10 Replies

  • That is so scary. I'm sorry you had to end up at emergency for your doctor to finally take notice. I hope the additional injections help quickly!

  • Thank you! Hopefully this is the wake up call!

  • Sorry you went through this.

    Hopefully they will continue to give you injections every two days until you stop improving as it says in BNF Chapter 9 Section 1.2 for those with neuro symptoms.

    Perhaps you could get a copy of the BNF and point this out to them if they want to stop your injections after the 7th one. The BNF is copyrighted and a copy will cost £30 approx.

    Are they supplementing your folate? Are they monitoring your iron levels and potassium?

  • Thanks Sleepybunny, lets hope so as I really just want to see an improvement so the heart thing can be investigated properly as at the moment I don't know what symptom is for what!

    I think I will resort to that if that does occur, interestingly enough my GP didn't go off my blood test results for B12 as I think he realised they would be high regardless atm. He went off the size of my red blood cells which are still enlarged.

    He is refusing to supplement folate until I make an improvement which is ironic! and they haven't even mentioned my potassium!

  • Hi I was wondering how u felt each time you had your loading dose injections? I am due my 2nd one today but have felt awful since the first one am worried that I will feel worse again

  • Hey,

    if I'm completely honest I haven't felt an improvement at all yet.

    I suppose everyone is different on how long it takes them to recover. I think mine has a lot to do with the fact my deficiency was particularly low at 50pg, and they had spaced the loading doses out a bit too far also. I'm hoping now that I am having them every second day that I shall see an improvement.

    Stick with it Fiona! how many loading doses are you having and how often? any nuero symptoms?

  • Having six injections over 2 weeks only in 2nd one and feel worse than did before I started getting them!!

    Yeah defo have had the pins and needles and short term memory also can get very anxious especially when am exhausted!

    Am hoping that i don't feel like this all the way through loading dose injections!!

    Sufferes low ferritin for years and finally got an iron transfusion last year they are saying that my B12 could of been low for quite some time. But it's just been picked up now !!😢

  • I know its really frustrating!

    just try your best to stick with it, if after the loading doses you are still struggling make sure your GP knows!

    At the end of the day the guidelines say you have your loading doses and if you have the neurological its every second day until there is no more improvement!

    I hope things get better for you!


  • Hi,

    "they haven't even mentioned my potassium!"

    I'm a bit shocked they haven't mentioned potassium.....

    Sometimes there can be a fall in potassium levels (hypokaelemia) when B12 treatment is started. Low potassium can cause heart problems.





    Perhaps your GP might be able to check your potassium levels. It is possible to get a potassium blood test privately in UK. Sometimes you can have private tests done through your GP.

  • Thanks sleepybunny pretty shocked too.

    Having injections every second day now some symptoms are subsiding but most are still there:(

    I shall bring this up at my next appointment.


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