I have been diagnosed with Pernicious Anaemia since 2013 and have injections at my GP surgery every 10 weeks. I am due another injection in around 2 weeks time.
I had a telephone appointment with a Nurse Practitioner yesterday to get my hydroxocobalamin prescription, who insisted on more blood tests and asked me to make an appointment with a GP to discuss further. I spoke to the GP today who also wouldn't prescribe this, without blood tests. She says my last blood test (Summer 2019) showed levels of 580 and that this is well within therapeutic range and doesn't want my B12 to reach "Toxic Levels". She also wants to me take the test for Intrinsic Factor again, as "people with Pernicious Anaemia tend to have much lower levels". Obviously she doesn't know a lot about PA!! I have spoken to a nice lady at the PA Society and she has advised me not to have these blood tests.
I have another appointment on Friday to speak to a more Senior Doctor. So hopefully I will get somewhere. Any advice please? I've never had to fight this much for my injections before.
I was also recently diagnosed with Chronic Fatigue by the Chronic Fatigue Service, but I don't think that diagnosis is accurate, as although I do have fatigue, my fatigue and pain no where near as severe as others who are diagnosed. I know a lot of the neurological symptoms can be similar. I have tried explaining this before to GPs but they all just state that my levels of B12 are fine and all my other blood tests come back as normal, so that's how I ended up with that diagnosis. Can anyone relate to this?
Stay safe everyone!
Thanks
Sarah
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sarahlouiseee
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A massive degree of ignorance is being shown by your G.P.— Very succinctly put by fbirder .. You have Pernicious Anaemia, the treatment for which is FOR LIFE , as there is no cure for any autoimmune conditions . .Ask for a medical reference to “toxic levels” of Vitamin B12 You wont get one ,nas none exists . . How can these people retain their licence to treat patients when they display such ignorance ? It’s actually frightening . How many patients have come to harm because of such doctors ?
You must get your B12 injections regularly to keep well . When symptoms return , you feel so bad that it’s then doubly hard to fight your corner . Most of us on this forum have experienced this , that’s why we are forced to self-inject to keep well . I’ll send you some information in case life gets desperate. Best wishes .
Thankyou for your message. I have been reading this forum for a while and it seems a lot of people are in a similar situation with their diagnosis and treatment 😔
Thanks, I'll look out for the information. I'm anxious with needles. I've gotten a lot better within the last couple of years as I know it's important to have the injection, but not sure I'm comfortable with self-injecting yet haha
I can understand fear of needles. It's built in to us. However familiarity with the injection methods can greatly reduce this fear. Try practicing injecting an orange regularly with water till it becomes second nature and my bet will be that your fear levels will be acceptably low. Worth a try?
Link above has letter templates that people can base own letters on.
Letters to GP may be more effective than a conversation as in UK my understanding is that letters to GP are supposed to be filed with medical notes so hopefully less likely to be ignored.
I suggest you try to track down the local guidelines on treating B12 deficiency for your CCG or Health Board then compare the local guidelines with BSH guidelines and BNF and NICE CKS links.
Lots of B12 info in my replies on the the thread below eg symptoms, causes of B12 deficiency, B12 books, B12 websites, B12 articles/documents and a few hints about dealing with unhelpful GPs.
This is getting beyond ridiculous, there are so many of us being refused our injections now. The GP’s ignorance is extremely scary, how can these people be responsible for our health! The thing is yes we can take our health into our own hands but then on our medical records it’s forever recorded as no longer an issue which compounds their theory that they were right. I’ve ordered some out of desperation but it shouldn’t be this way. Are diabetics ordering their own insulin???
that’s precisely why I keep pushing and won’t buy any. I don’t want them to think they’re in the right when I suddenly self inject and get better. It feels a bit like cutting my nose off to spite my face sometimes but I don’t want to dig a hole I can’t escape from
Last time I spoke to a GP to push for more jabs he said “well your levels are normal” so I said “well yes, they would be, because I’m having b12 jabs precisely because I have pernicious anaemia which means that levels are irrelevant, I need the injections to live and not be a complete wreck which I currently am” 🤦🏽♀️ Mind you I only had the strength to say that because of this forum 😊
Did you manage to get your injections more often than every 12 weeks? I only managed to get mine every 10 weeks due to a lovely nurse in my old practice, who just told me to make earlier appointments with her if I was starting to flag, get cramps etc... 🙂
Just kind of stuck with 10 weeks, they won't bring it forward again ☹️. I knew someone who had a gastric band and used to get them monthly from their GP.
If you have symptoms that are getting more severe especially neurological symptoms, have you considered asking them to give you a second set of loading doses?
These days I am more willing to challenge things.
Perhaps you could ask them to look in their BNF (British National Formulary) book Chapter 9 Section 1.2 and ask them what it says about loading doses and maintenance injections for those with neurological involvement (meaning neuro symptoms). They will have a copy of BNF somewhere on their desk or shelf.
You could include info from BNF link below in any letter you write to GP.
If you had neuro symptoms in 2013, my understanding is that you should have had a b12 loading injection every other day for as long as your symptoms continued to improve. There is no set time limit for how long the every other day loading jabs can continue for those with neuro symptoms but sadly I think many GPs are unaware that there is a different pattern of treatment if neuro symptoms present.
Link about writing to GP if under treated for B12 deficiency with neuro symptoms .
I was also told that my b12 was now within the specified limits so I will not need an injection. I have had PA for 20 years and been given injections (for life) every 12 weeks. So I told the doctor that if HE was not prepared to follow the NICE recommendations I was! I told him that I will be following their recommendations and will be self injecting from now on. I also told him to put that in my notes so that they know I am not cured and still need the injections. I also told him that I get them from Germany.
It seems that they want my b12 to be below the lower limit before the give me the b12. I did point out that that should never happen, since I am having b12 injections which should always keep it on the high side. I also told him that according to NICE I do not need to be tested for b12 as the results are irrelevant.
So Self inject but do let the doctor know that you are doing it and why.
I was told I might have CFS or maybe Fibromyalgia. I didn't pursue either diagnosis since the doctor suggested there was no treatment for either. My CFS has resolved with b12 injections (no longer needing 12 hours sleep or 2 hour naps) and my joint pain only comes back when I need more b12. I couldn't manage on every 3 monthly injections.
I haven't had B12 from practise since January .Advised to take high level tablets. I have been paying privately for injections but this avenue now closed as they too busy doing private covid tests!
I have had numerous conversations with gp but they really wont budge.
Writing to them personally might get a better response.
I think Hidden is right about pushing for what you need - but I would advise strongly against deliberately deteriorating in order to win your argument.
Tonyworks , I agree about keeping GPs informed and putting your case.
My GP recognised that I needed more than 1 injection every 3 months, which was the standard practice treatment for B12 deficiency. She had my MMA checked when I deteriorated on this regime. My MMA was raised- and she diagnosed me with Functional B12 deficiency, confirmed by the test lab. I was reloaded, at 2 injections a week, for 6 months and did well before I again deteriorated.
This time I was sent to experts: I saw many consultants but no real cause for Functional B12 deficiency was found, and so no real recommendation for frequent injecting was ever made. Since I had been off sick for 15 months by then, I was in danger of losing my job and looking to start a phased return. I told my GP that I had no option left but to self inject. She had sent me everywhere by then, alternative conditions had been ruled out, and she'd seen me at my best when my injections were more frequent.
I told her that I was going to self inject. She asked me when I was going to start.
I admitted "Yesterday".
She continued with the advised 1 injection every 2 months (from haematologist). and kept checking my folate, ferritin, vitamin D, thyroid etc. to keep me on track.
However, when I had to see another GP about increasingly irregular heartbeat, while my usual GP was away on holiday, he was extremely agitated about me self injecting. He rushed me off, took this information to the practice and then wrote me a letter saying they had stopped my NHS B12 injections. This decision was made by the practice without discussion with me or with the knowledge of my usual GP, who was still on holiday. I'd seen this new GP once, for about 5 minutes.
Angry at first, I am now just disinclined to see any GP in the practice except my usual GP, and continue to self inject at a frequency that allows me a life.
Irregular heartbeat turned out to be ventricular ectopics - no cause known, not dangerous. Phew ! It gradually returned to its previous milder, occasional "blip", rather than several times a day and night episodes that were worsening. This has been a constant which I relate to my B12 deficiency and am not concerned.
I did, in the end, have to give up with the phased return to work and admit, after 2 years of trying, that a full-time return to my previous position wouldn't happen for me. I applied for voluntary redundancy during lockdown - and got it.
Advice would be:
-Find a GP that you trust and stick with them.
-Trust should be a mutual exchange of honesty: tell them if you self inject, if you feel you can.
-Don't give them a pile of reading to do, or give them internet links. Just a quoted sentence or two from guidelines for medical professionals. Ask questions that might lead them to the thinking bit !
-You can never be entirely sure what the GP's reaction to self injecting will be, but if they have seen you at your best and at your worst, and related that to your injection frequency, they might have come to the same conclusion as you did.
Lettielew - How long have you now had to go without injections and what effect is this having ? If you are experiencing a return of symptoms, particularly any neurological ones (such as numbness and tingling in feet), tell your GP this.
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frustrating!! 
