Recent/new PA and B12 Diagnosis and Treatment. Need injections more regularly - persuading Dr?

[honey1995]

Hi All,

I'm new here - thought I'd join as I've been browsing the site for some time following being diagnosed with Pernicious Anaemia and B12 deficiency in July/August this year, apparently probably resulting from issues with heavy menstrual bleeding (sorry if TMI) and being on the contraceptive pill for 9(ish) years. I'd been feeling exhausted all the time for about 6 to 9 months prior to this (couldn't go to the gym anymore, was literally just crashing after a usual day writing my PhD) - I'd been putting it down to stress and being lazy but eventually decided that I needed to get checked out and here we are!

My B12 levels were at 104 following a blood test in July which I understand is quite low (not really sure, wasn't actually explained to me!), and so I had the 6 "loading doses" at the start of August. I had the flu at the time so didn't immediately feel the true impact until end of August. From then on, throughout September, I was definitely feeling more energised, less tired, and had better concentration - felt as much like my old self as possible at that time (I was changing to a different contraceptive pill at the time too).

For the past few weeks, however, since start of October I've started feeling back to how I felt before the injections. I'm currently in the second year of my PhD, and also do some teaching of undergraduates alongside, and I'm running a choir this year so I am quite a busy person and can't afford to be exhausted constantly/not about to concentrate.

So, now, I'm after some advice really about people's experiences with getting the B12 injections more regularly than 3 months in the UK. I think I need the injections every 2 months rather than 3 - my next injection isn't until Nov 16th and this just seems like such a long time to last whilst feeling like this/not being as productive with my work/feeling exhausted. Has anyone had any luck with persuading Doctors in the UK (I'm in Wales) to increase the frequency of their injections? How could I approach this with my Doctor (got an appt on Friday)? Any studies/research papers I could use? What's the best way to achieve this?

Any advice would be much appreciated, thanks

[Kellz2018]

Hia, sorry to hear of your issues. I was diagnosed last June / July, I think anyway. I had the loading doses and now three monthly injections. After four weeks the burning leg pain, tiredness etc returns (the joys!). I did ask my GP to check my levels again earlier this year. She agreed but told me my body is so used to high levels that it 'craves' more. I have just bought the book written by PAS founder which is extremely interesting about diagnosis' etc and may return to my GP soon once the 4-5 week following injection, pain and foggy, starting to become quite unsteady, clumsy etc returns. I doubt very much she will increase my frequency as she threatened to reduce them before......

I hope your journey is better than some.

Take care

X

[honey1995 in reply to Kellz2018]

Aww no Kellz, sorry to hear that your GP has been so rubbish hoping mine isn't like this tomorrow! Can't believe she threatened to reduce them - that's rubbish!

Yeah I get the same pain, no balance, clumsiness, and just can't get my brain to focus on anything for more than 5 mins. I hope you can get yours sorted at your next appt.

What's the name of the book you read(I see he's written 3)? Going to have to educate myself as this is apparently a large part of my life now!

Thanks for your reply lovely!

[Kellz2018 in reply to honey1995]

Hi good luck today. The book is The Forgotten Disease. Take care x

[JanD236]

Yes. After speaking to my GP about my symptoms reappearing by 4-6 weeks he agreed to give monthly injections a try. He provides me with a prescription so that I can self inject. That was well over a year ago now and fortunately he put it on the list of my repeat prescriptions so I’ve been allowed 5 vials every 5 months ever since.

[honey1995 in reply to JanD236]

Phew, this sounds like a much more positive result!! I'm hoping that this might be the case with mine - I think I could manage with every 2 months as I was fine until the end of September and then it all started going downhill again. Not sure how I feel about self-injecting though - freaks me out a bit, but if it's the only way forward then I'll have to just get used to it!

Thanks for your reply

[Wendyr2010]

Hi I was diagnosed with B12 defincey at the beginning of the year I had a bit of a battle to get injections but have felt so much better since having them but after 8 weeks the symptoms all returned. I recently had to move doctors because I’ve moved I went for my injection and told the nurse that I felt I needed them more frequently she said no problem just get the doctor to ok it so I saw him today and he said absolutely fine if you feel you need them more frequently, to be honestly I’m totally shocked I thought I was in for a battle but this doctors surgery seem to have a totally different attitude to my last doctors.

Good luck hopefully your doctors will be as obliging as mine.