B12 injections discontinued

[Retrofunk]

Hi there

I had B12 deficiency diagnosed a couple of years ago, and as it wasn’t diet related, my GP put me on lifelong B12 injections even though he didn’t feel I really needed them as IFA was negative (this was in Hull following HEY guidelines I suppose). He was very dismissive of my neurological symptoms - foggy headed, forgetful, balance issues with lots of falls (I’m in my 40s) and problems with my sight. He put me on standard 6 loading doses followed by quarterly injections. He wouldn’t increase them despite my being desperate for further injections after just over a month.

I have now moved house to a different area and changed GP. They did a B12 test which showed my B12 at over 1000, and with parietal cell antibodies normal, they have now refused to continue my injections. I was supplementing to a degree with B12 sublingual spray and it was about 3 months after my previous injection. However I had been getting very worrying symptoms including electric shock type feelings in my hands and feet, weakness, really bad brain fog, anxiety and inability to sleep, pins and needles and occasional total loss of feeling in my hands and/or feet with pain - sometimes only partial as it felt like I was walking on sharp stones for example. Oh and of course the ever present fatigue!

The doctor did a vit D test which was normal. I requested copies of my blood tests, so I have all the recent ones, though not the original ones from before changing GP.

I was told to stop taking any B12 for 8 weeks and come back for another test, but I wasn’t happy about this. I have since got a nasal spray and more sublingual liquid, and I have been using those with a multivitamin, folic acid high strength and a vitamin pill containing Zinc, magnesium citrate at a low dose and B6, and adding magnesium oil spray occasionally which does seem to help me sleep. My symptoms have improved a great deal, but not completely.

I have been to my GP today and told him that I believe that as my B12 deficiency is non diet related that I should be on lifelong injections, he has agreed to refer me to the Consultant Haematologist for further tests but this will take a couple of months, and I wonder if the supplements I’ve been taking will impact on any results and mean I won’t be able to get a diagnosis. He won’t allow me to have a B12 injection while I am waiting despite tingling in hands and feet, and won’t support me to self inject by allowing someone from the practice to show me how to do it safely. I am after some advice on what I can say to the haematologist if as I suspect, my blood results are skewed by the B12 I am taking.

Sorry for the long post and I really do appreciate any help you can give me!

[Gambit62 Administrator]

Retrofunk,

really sorry that you are being mistreated so appallingly. Unfortunately you are far from alone.

Serum B12 can't be used as a way of managing B12 after you have had loading shots and are on maintenance doses and the current BCSH and NICE standards do not recommend testing once on shots.

You could try writing to your GP drawing their attention to the BCSH guidelines which they can access through the BNF but you can also access here

onlinelibrary.wiley.com/doi...

drawing their attention to the following

a) there are different protocols for treating a B12 absorption problem with neurological involvement - which is more aggressive

b) IFA is not a definitive test - it is prone to false negatives - 40-60% of the time depending on the test method - so a negative does not rule out PA and the standards actually refer to IFAB negative PA as a result.

c) treatment should be for life

You could also try pointing them to the pages of the PAS website specifically aimed at helping medical professionals improve the quality of treatment and diagnosis.

pernicious-anaemia-society....

Unfortunately there really is no guarantee that the haematologist will know much about PA and it's quite likely that they won't have a good understanding of the BCSH standards. The only thing you can really do is refer them to the standards they are supposed to follow.

You could try joining the PAS and contacting them for more specific help in dealing with your GP - they can sometimes intercede.

pernicious-anaemia-society....

pernicious-anaemia-society....

[Retrofunk in reply to Gambit62]

Thank you Gambit62 . I did mention the above points to the GP but he wouldn’t get the Nice guidance up on his screen, though he did say he would review it after I left and ring me if he saw anything that correlated with what I was saying. I had printed out lots of information for him but I left it at work! (Brain fog). My partner will drop it off for him on Thursday as I’m not in the office for the next few days.

There is a further complication in that I actually used to be the secretary of the consultant haematologist (20 years ago) and he can be very dismissive too, I’m hoping he will treat me differently as a patient. We’ll see.

I’ve also joined the pernicious anaemia society but I have read many comments that help is limited unless a diagnosis of pernicious anaemia has been made, which it hasn’t. The GP did say without a diagnosis of pernicious anaemia he will not be able to give me any more B12 unless my blood levels drop, which I’m hoping I can stop from happening! I am considering self injecting and feel this may be the only way to go. I feel like I’m in a catch 22.

Thanks for your advice though 😊 it really is appreciated and helps not to feel so alone in this.

[wedgewood in reply to Retrofunk]

There have been many people on this forum with your problem . It can be very difficult to get a diagnosis of PA because the test can be inaccurate , giving a negative result , even if you do have PA . I just wanted to tell you that self-injection is no big deal and not expensive . I learned how to self inject by watching u tube videos ( some are excellent , some are poor ) The thigh is the chosen place for IM self-injection . Some people use the sub-cutaneous method . ( into a fold of skin in the tummy with a short needle) B12 Hydroxocobalamin ampoules.

can be obtained from German online pharmacies including Amazon.de in English .Everything else can be obtained from medisave.uk — needles , syringes , alcohol ,swabs and sharps box . You do not need training from a nurse . So if in the end , you are forced to self -inject , do not worry , you will get help on this forum . If you buy in bulk , an injection need not cost more than £1.00 Best wishes .

[Retrofunk in reply to wedgewood]

Thanks wedgewood I think it’s going to be the way forward! Just a bit daunting 😊

[Marz in reply to Retrofunk]

I received B12 injections from others weekly for a couple of years or more and then decided to do them myself. Sitting comfortably well back on my bed so the thigh is relaxed. You cannot feel the needle go in - then deliver very slowly as that can sometimes sting. You can buy OTC in some European countries and syringes. I live in Crete 😎

[Retrofunk in reply to Marz]

Thanks Marz I will try that, I think you’re right as relaxing will be the key. My partner has said he will help but he works at sea for 4 weeks at a time, so I’d have to do it myself quite quickly!

[Gaudygoat in reply to Retrofunk]

Hi Retrofunk. That's an appalling story though as Gambit62 says, it is depressingly common. The fact that your GP didn't phone you back is a bad sign as it is there in black and white in the guidelines. They should have called, even if just to tell you that you were right about the guidelines but they didn't think they applied to you - which would be nonsense as the guidelines advise to treat the symptoms and not the readings and your symptoms read like a checklist for B12 deficiency. You could print out the guidelines and take them into the doctor but even if they reinstate the injections, you are unlikely to get them more than 3 monthly.

When I was unhappy with the response of a GP, I made another appointment for the next day with a different one. I wish I could say everything was sorted but I did at least get a slightly more sympathetic response. My feeling is though, if the GP doesn't trust me then there is little point in my using them so it's probably best to seek out another.

As for self-injecting, I've been doing it for a year now and it is pretty daunting to start with but once you start it is easier than you expect it to be. Good luck!

[Retrofunk in reply to Gaudygoat]

Thanks for the reply Gaudygoat - I am definitely going to take the guidelines to the haematology appointment and also order some B12 for injections!

[Retrofunk in reply to wedgewood]

Can I ask how long the ampoules take to be delivered normally please? Is it days or weeks? I’m about to go away for a week and wondering if I should order them now?

[wedgewood in reply to Retrofunk]

I always order from German online pharmacies , and the ampoules have never taken longer than 5 days . They usually come by courier . It does depend on when you order , as not all couriers deliver on Sundays . If you go away for a week they might well arrive before you come back .

You will eventually be so pleased that you decided on sel-injection. I’ve been doing it for almost 3years . It has changed my life . I got in a terrible state when my GP refused to give me more than one injection every 3 months . I had numbness in my feet and it was creeping up my legs , exhaustion ,confusion , giddiness, anxiety and breathlessness . I had a diagnosis of PA ( obtained privately as my GP had more or less told me that I was imagining everything) — would not budge . When you are feeling so terrible it’s almost impossible to argue the toss with the doctor .

. Get an injecting needle as fine as you can —at least 26 gauge and 1inch long , depending on the thickness of the skin in your thigh . The withdrawing needle —about 1 1/2 “ long .

Best of luck with everything . 🍀

[Linda730]

Do what you can to learn how to self-inject, Retrofunk. Just the feeling of being in control of one small aspect can take away the fear. I've been through what you're going through and it was definitely a scary time. Trying to defend your position while your mind is less capable of defense is so unfair. Knowing more than the doctors who treat us is tiring. But be persistent. It's worth it.

[Retrofunk in reply to Linda730]

Thanks Linda730 , I am going to do this. My partner has said he’ll help me! 😊