Hi everyone, I have had PA for the past 7 years and having my B12 injections every 10 weeks. Recently I had a blood test done from the doctors which included B12, the doctors sent me a letter saying no need to come in for your injections, make an appointment in 6 months time as your b12 levels are too high, we will check them again in 6 months. I spoke to the doctor he said that my levels were way too high over 2000 and don't need the injections. I told him I was not happy about his decision and that I have been in touch with the PA society, he then said to me he would check my b12 again a week before my injection is due, that would be in 3 weeks time. I am worried because I know that I need my injection on time when it is due and will no way be able to wait longer then that. Does anyone else have problems with their GP and if so what can we do about it? and have the doctors have a right to stop your injection for 6 months when you have pernicious anaemia?
I am worried sick of what might happen to me.
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salsadancer
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Testing of serum B12 levels after treatment has commenced is not necessary. (See bottom of page 5) where the 2 months interval of injections for those with neurological symptoms is also reiterated.
No , your GP has no right to stop your injections of B12 . As a Pernicious Anaemia patient you must have injections for life . Once commenced no more testing is required . This is the official NHS position .
Your GP must follow this .
You must be feeling so very worried . That’s shocking how you are treated . If you are a member of PAS , the society will intervene with your doctor . All the best to you .
Hi I also have PA. And my levels are 2000. My GP is being awkward because I checked my blood results at the online surgery. He was livid, and is stopping my B12 injections. He wants me to have a blood test every time before he with authorize an injection. I am going to be very ill without these. My levels have always been high, even before I had my B12 injections.
They do not understand how important our B12 injections are. They are not just for B12 deficiency - that is totally different from Pernicious Anaemia. We Need them. Tablets or anything taken orally will not work. the stomach will just throw them out, if the intrinsic factor is missing and not working.
my levels are always around the 2000 mark and I still feel rotten some days, my former GP said he would like them to be around 1000 but w as happy to give me my injection every 2 mths as I had so many symptoms, this all went up in smoke when my surgery closed and the new doctor wanted me to go back to 3mthly injections, I now self inject every mth.
I agree with both Clive and wedgewoods comments,on your next GP visit take a friend or relative with you along with as much info as you can get hold of .Hope you get sorted soon
My old gp was fine the new surgery I go to only care about cost.
Mine is always around 1300 or so.
I would go in with the information as you are not supposed to be retested with symptoms.
That said I’ve known GPs in my area stop people having them at all. So I bought a stock myself and self inject as once every 3 months is totally insufficient for me.( mine level was nil when I started so I totally understand your fear)
salsadancer - your doctor is bound by professional duties to use their judgement. Whilst this means that they shouldn't blindly follow standards it can also mean that they don't have to follow national standards. To make things more difficult there are still some local standards on treatment that haven't been updated since national standards changed in 2014.
However, not following standards does leave them vulnerable if trying to demonstrate that they are providing the standards of care that they should.
This is a link to the BCSH standards relating to cobalamin (B12) and folate deficiencies
These state that there is no need to repeat serum B12 unless there is a reason to believe that treatment is not being complied with. The conclusion from this would be that high levels of B12 post loading shots shouldn't be used as a basis for withdrawing treatment though the standards aren't that clear. They do however state that in the case of PA that treatment is for life.
NICE standards are similar - in both statements and ambiguities.
Suggest that you write to your GP drawing their attention to the standards and asking to be treated in accordance with these standards. Your GP can access the BCSH standards through the BNF
That sounds like a typical answer from a GP at these worrying times with Covid 19. I was told I could not have mine for a year! Even when I was there for a blood test they would not do it. I told the doctor I was going to be self injecting and he said he would not recommend it but it was up to me. Another time, when I had my blood test, he said that my B12 levels were fine, but I was still getting all the symptoms before my injections was due. It seems so many of us on here are in the same position. Have you thought about self injecting? After the good advice I got on here, I got my B12 injections from Germany and needles from Medisave. We know our bodies better than a doctor does in these circumstance. We know how we feel. It seems that many GPs have not been trained about lack of B12. B12 deficiency is different to Pernicious Anaemia.(with PA anything taken orally will not be absorbed as the intrinsic factor in our stomachs is not working. I have had mine for over 40 years. It is something we NEED and we should be listened to. We are here to help each other, and if you feel your body needs the B12 then it needs it. Blood tests are not always correct. I was feeling really poorly when I got my blood test done some years ago, and despite the doctor saying my B12 levels were fine, I knew that I needed the injection. Please try not to worry, as you are not on your own. I found some wonderful people on here who have helped me. There are videos to show how to self inject and lots of information on here. I do hope you can get something done to help you. Take care. Briarhillcat. x
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