Refused routine B12 injection because I was honest about SI.

[Discombobulated247]

I've recently changed surgeries and 'fessed up' to my new GP that I SI, explaining how the prescribed 8 weekly injections just aren't enough for me to function anywhere near what I used to consider normal.

Had bloods done shortly after my last official B12 at the surgery, followed by a telephone consultation. The GP informed me my B12 was "off the scale" (of course it was?!), and I should stop SI and save myself some money!

So today having recently returned from 6 weeks abroad, and 11 weeks since my last NHS injection, I'm sitting with the nurse, syringe loaded on her desk, sleeve rolled up and ready to go, and she asks when did I last give myself a jab? It was 2 weeks ago, and oh boy, 2 weeks takes me to my limit! Because it was so recent she had to get permission from a GP before administering it, and he wouldn't allow it, even though there's a note from my previous GP who sought advice from an 'ologist regarding the very same issue of frequency!

I should have lied, saved myself the stress and the wasted hour drive there and back.

Tomorrow I have another telephone consultation booked with the "save yourself some money GP" to discuss the events of today, and don't know if I have the will, energy or patience to try and explain what it's like living with PA.

But on a brighter note, having SI'd when I got home, had a bit of a cry and letting off steam here, I'm feeling much better now!

[wedgewood]

I can feel for you Disconbobulated247 . I do not go to the surgery any more . It’s so cheap to SI. also convenient . Think what it costs you in petrol for an hour . If you buy the necessary in bulk , an injection must cost less than that journey! ( about £1.30) One day the medical profession will get the necessary training to learn about P.A. . It WILL happen . But I will be 6foot under by then !

[Discombobulated247 in reply to wedgewood]

Thanks Wedgewood. Guess I'm just fed up with trying to educate the 'professionals' again, and needed to vent my spleen!

Keep up the NHS injections so it's documented for insurance purposes.

[deniseinmilden]

I'm sorry you've gone through this - the ignorance is staggering, isn't it!

Having done your jab hopefully you'll wake up feeling better today and be ready to deal with them.

It's cheaper to do our own jabs than even going to the surgery so I don't bother to get the monthly ones they offered me.

If you can keep your cool, stay a bit detached (pretend you are going on behalf of someone you don't know) and can clearly, but gently and assertively, educate them then hopefully you will have raised the cause on behalf of all of us and particularly other sufferers who will inevitably going to the surgery too.

Good luck!

[Discombobulated247 in reply to deniseinmilden]

Hi deniseinmilden, I kept my cool, and the Dr is now aware of the change in BNF guidelines. She was adamant that injections should only be given every 12 weeks, and I shouldn't be having them at 8 week intervals until I insisted she check this information online. Thanks for your support, it's good to know we're not alone.

[deniseinmilden in reply to Discombobulated247]

Fantastic - really well done! I know how much effort it takes to keep yourself together when facing this sort of problem and you have achieved such a big deal today.

Lots of people owe you a big "thank you"! Brilliant.

[pitney]

similar thing happened to me 2 years ago ,the GP I spoke to took the B12 off my prescription altogether because I told him I was SI every month,just wish I could get someone at my surgery to listen or read the info that I take in.

Good luck with your next visit hope it goes well for you

[Discombobulated247 in reply to pitney]

Hi Pitney, thanks for your good wishes. During the telephone consultation (can't remember the last time I actually saw a doctor), we reached an agreement; 8 weekly injections will remain prescribed, and I will not share any further information about SI.

[Cherylclaire Forum Support]

Although my GP and the nurses know that I self-inject, they have all seen how ill I get on an NHS frequency. I tried for years, so did they, and I went to all the consultants around when it got too difficult for me and GP, hoping to find solution.

Solution is, it seems, if you need more than 1 every 2 or 3 months, you might get a "trial" on a better frequency but it's unlikely to last beyond the first set of blood tests/ next consultant. When consultants started telling my GP to bring frequency back to every 8 weeks "as per guidelines", I already knew that this would make me deteriorate again because it had happened before at that frequency, so I really had no other option.

If I wanted to stabilise or improve, I would have to work out a frequency for myself that would enable that to happen. I was honest about starting self-injecting. This helped me because my folate and ferritin get very low despite diet too, and these are regularly tested to help me get optimum health without going over.. B12 is never tested now as GP is well aware that my levels will be >2000ng/L - and that there are no "overdose" or side-effects beyond improvement of all symptoms after a very, very long time.

Okay, there's a possibility of temporary spots.

I think you did the right thing in being honest- and that is not an easy decision, even with a GP that you have built a good relationship with, one that you trust. This should have been respected at least.

Yet another one that needs educating, not just in B12 deficiency but in what it is to be human. Work out if it is worth all the time and effort with this one first...... after all, you are paying for your own energy !

[Discombobulated247 in reply to Cherylclaire]

Hi cherylclair. Many thanks for your advice, you've asked the question I needed to hear! I don't think it is worth the time, effort or stress trying to educate this GP. She's now (grudgingly) aware of the latest BNF guidelines, and I'm going to leave it at that, listen to my body and continue with SI.