Firstly, I must say, I feel lucky and greatful that I have been able to get my b12 on prescription since being diagnosed with PA 7 years ago, I self inject twice per week. However, it has not been without challenges i.e. paying a private Neurologist (in 2020) to confirming to my GP that I need twice weekly injections, paying a private gastrointetrologist to confirm that I have tested positive for intrinsic factor antibodies and positive antibodies to gastric parietal cells. I have had to write numerous letters to the Practice Manager when my B12 prescription has been abruptly stopped on too many occasions.
I am also grateful and lucky to have found PAS and this forum when I was first diagnosed, it has given me the knowledge to be able to look after my health properly and has given me confidence and the correct terminology to deal with the sometimes challenging medical profession.
I have been getting my B12 prescriptions for the last 26 months with no problem until this week when my B12 prescription was rejected and I was sent a text asking me to make an appointment to discuss this with a GP. I was given an appontment for this morning with a trainee GP, apparently it was another trainee GP that cancelled the prescription.
I wish I had recorded the conversation with the trainee GP this morning, he asked me if Pernicious Anaemia was forever and when could I expect to stop the injections? He also asked how I was managing with self injection. I'm not good at maths but that is roughly 728 injections twice a week over a 7 year period, I'd say I'm managing pretty well. I described all my horrible neurological symptoms when I am under medicated and that I have tried in the past to reduce my dose but that I am one of the small percentage that have to inject more frequently.
I was doing most of the talking (I remained very polite) it was so obvious that he was clueless about PA. So he has agreed to reinstate my prescription temporarily BUT... he wants me to see a NHS Neurologist at the local hospital so that I can be monitored! I explained that only I can "monitor" my own symptoms. I mentioned that NICE guidelines state there is no value in testing B12 once treatment has started. I tried to reason with him that I am quite well on twice weekly injections and did not want to waste the Hospital staff or Neurologists time but he was most insistent that he was going to make the appointment for me.
I thought hospitals were struggling, we have a shortage of Doctors and we don't know when the junior Doctors strike will be resolved - I feel this whole exercise was/is such a was of everyone's time.
Sorry if I have gone on a bit and thank you for reading.
Best wishes.
Anne
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HKAnne
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You have indeed been fortunate so far . I’d hoped that the younger generation of doctors would be well informed about P.A. but apparently not ! It will be interesting to hear how you get on with the Neurologist !
Thanks Wedgewood, I am contemplating writing to the Practice Partner as I don't feel the trainee doctor understands the condition well enough to make a referral.
I am always conscious that the day will arrive when I have to start sourcing my own b12 - so still grateful that I am luckier than most on that score.
Hi Cobalt1312,Thank you for the fist shaking and support! I changed GP's a couple of years ago but I think they are all pretty much the same. Out of the frying pan and into the fire is the only thing that stops me from changing GP's again.
I can relate...Better the devil you know than the devil you don't. It takes a lot of energy, time, and effort to seek out new providers. There are some good ones, but hard to find.
Sounds like you are in exactly the same boat, I don't wish to sound paranoid but it makes me feel like this is more of a plan than a coincidence.
I feel I have to be on my guard and prepared for this battle that crops up every now and again, it does not do your stress levels any good and it is such a waste of everyone's time.
I am glad that you are getting your prescriptions at the moment and hope it continues for the longterm.
Your email is priceless! Is it any wonder that it takes a long time to be seen in the surgery and referrals to hospitals?
These 'Junior Doctors' will be the same ones who are now protesting about wanting more money. Ignorant of the nature of PA, and they're perfectly happy to show their ignorance. Of course, they are the gatekeepers and therefore 'they know best'. It makes me wonder how much they know about other stuff.
There's no doubt we need them, but when I read this sort of thing it really makes me wonder.
Yes, what a total waste of everyone's time, they seem to be stuck on this "one size fits all" formula, if injections once every two/three months is okay for the majority then it is okay for everyone. I also have autoimmune hypothyroidism but I am not prescribed the same does as everyone else that has an underactive thyroid, nor do they randomly stop my Levothyroxine prescription.
Junior's in any profession or trade have always earnt less money for that exact reason, they are juniors, still learning. Once you have the experience and become more Senior you then get the pay rises and the better job opportunities.
Sorry to hear that you have been treated so poorly.
You should not have your health taken care of by anyone who has to ask if PA is forever. You don't need a neurologist, you need a better doctor.
No, they are not all the same.
My GP was not happy that I was failing to respond to the usual B12 treatment and deteriorating. She found a laboratory that would test my MMA and it was found to be raised: this gave me a diagnosis of functional B12 deficiency, confirmed by the lab, as she had already ruled out renal problems as a cause. After this, I was given 2 injections a week which gradually gave me improvements, so this frequency was extended. Six months later, despite best efforts, I again deteriorated - at which point, I was referred to secondary care: haematology, gastroenterology, neurology etc etc. Eventually I decided to self inject -firstly at EOD frequency, then after a couple of years, reduced that back to 2 injections a week. I discussed self injecting with GP - admittedly, the day after I'd done the first one ! She continued to support me, monitored ferritin, folate, thyroid and vitamin D - and still worked on trying to find answers for me.
My MMA finally dropped into range at the 6th test - three years after the first test.
She never had my B12 tested after the more frequent injections started - she knew that there was no point. It wasn't the whole story.
Thank you CherylClaire, you are right, I definitely need a better Doctor.
I am surprised that a Trainee Doctor has the authority to make referrals to a Neurologist, especially as he appears to have no knowledge of PA. When I was with my former GP practice, my GP was very reluctant to make Consultant referrals as she said that the Consultants get angry with GP's that refer people before they have tried all other options first.
I have made enquiries with my local hospital and have found out that there is a 43 week wait to see a Neurologist. I feel quite guilty about this referral, as I am feeling very well and there are so many other people out there who genuinely need appointments.
I am glad that you have a good GP and that she has contined to support you.
For the life of me, I cannot understand why the medical profession hesitate or restrict the amount a PA patient requires B12. Why the inconsistencies amongst the doctors? Each person is an individual, if one person requires more, why is it such a big deal? In comparison, if a diabetic person requires more or less insulin that is not a problem but,
If a PA person requires more B12 that is a problem. We all require different amounts of this essential vitamin and a person cannot overdose on it so, why the restrictions? We have to face roadblocks at every turn with seeing multiple doctors with different opinions on this subject. Honestly, I’ve had enough of this medical system. For this reason, I will be the advocate for my own health, with the exceptional knowledge that I have learned over the years and I will make the decisions that I need. I inject daily and will do so forever. I will see a doctor only when I need certain blood tests and other general matters. Never again will I be told that I only need B12 every three months from any doctor again. I pray that in the long term, I can recover from nerve damage and any other damage that PA has done to my body. I’m so angry with the medical profession for the suffering I have endured over the last few years and if I could take legal action for malpractice I would.
Hi GoneWithTheWind1972,You have just summed everything up so perfectly, I think if every GP received a copy of your reply our B12 problems might be solved.
I am sorry for everything you have had to go through but am glad that you are managing your own health well.
It’s a shame that many doctors are so ignorant about PA. It’s not a very complicated disease to understand. But I know it is a very rare disease and especially if it isn’t in their specialty area like hematology they probably haven’t had many patients with it. But still, they are doctors and need to do their due diligence to read up on conditions that their patients have and understand the symptoms/treatment so that they can make the best medical decisions for their patients. I wonder what can be done to prevent this lazy form of practicing medicine.
I have GPs who confidently suggested that my PA recovered even after i said it is supposed to be a chronic lifelong condition. Woohoo. Good job advocating for yourself thus far though it's a pain that same clueless said GP would send you back for another specialist appointment. I wonder if the specialist can make a memo once and for all to prevent you from bouncing to and fro again.
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