I have spoken to doctor today about B12 and the poor knowledge and approach to patients who have and/or will get this condition. I am now so worried that I have been over rating my own importance.
I stressed that I do feel benefit from 8 weekly injections but it doesn't last up to 4 weeks, I said my son, 53 y o was told he was fine after a result of 162 whatever. She said he is within guidelines so I said he is but 150 -1000 is ridiculously low and he is B12 deficient. I stressed I am trying to get treatment to be better for my family members, who will get PA n B12d because there is a strong family history of this condition, and also for any others who are going to suffer from this condition in the future.
She did listen, spoke up for guidelines and discussed. Said she will speak to specialists and will contact PAS.
But I am stressed out incase I have over stepped the mark.
Written by
3rdNettydoon
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Sounds like you've done the right thing. What are we meant to do but fight our own corners? GP's and Doctors are seeing thousands of people and only have a couple of minutes to understand the problems they face. Plus, so many people do have somatic conditions or health anxiety that this becomes a default assumption for alot of medics.
So we have to advocate for ourselves and push them a bit to do what's needed. Made all the worse when their knowledge of B12 is limited at best.
You must not feel bad. The NHS is under pressure, but it is there to provide us with proper care. It's the somatic people with health anxieties that should be questioning themselves, and I'm fairly certain they won't be.
You havent overstepped the mark. Please remember those that suffer with the condition are the experts for our bodies, so you know how bad it is, and only you can advocate for yourself. You have to help the GP's abd educate them on the impacts of what they see as purely test results. Also i am always keen to express to GPs that NiCE guidelines are exactly that, they are guidelines not rules and every patient is different, so guidelines are not a one size fits all, so never be afraid to speak up. You have done the right thing and hopefully your GP understands and appreciates your insights
I don't think you have overstepped the mark. We are always afraid to speak up for what we know is right because the so called specialist (Gps) know it all and won't hear anything different. Everytime I speak to my doctor I openly admit that I self inject once a week as every 12 weeks isn't enough. If they ever stopped my 3 monthly I would swiftly remind them of the NICE guidelines and make a complaint.The more people speak up the more we will be heard. It is by no coincidence that there is 30,000 people on this forum. If I'm correct. I hope I am haha.
You did the right thing so be proud instead of afraid. 😊
The only time I told my GP that I had had a private injection (this was during the time I was having a fight to get more B12 ) she shouted at me and told me to get out of her consulting room. I now have b12 every 10 days and if we meet in the hall we both make a show of not engaging,.
The only way things might change for B12 deficiency sufferers is if brave people stand up for themselves and their family so well done to you for having the courage to say something.
At least your GP showed some interest and has said she will contact PAS.
Next time you see that GP maybe you can point her to the PAS page for health professionals.
Do you have a copy of the guidelines she is referring to?
If you haven't and can't find them online, try submitting a FOI (Freedom of Information) request to the relevant ICB (Integrated Care Board) or Health Board asking which B12 deficiency guidelines are used locally and for a link to or copy of them.
Put Freedom of Information or FOI into search box on ICB website and it should take you to a page explaining the FOI process.
CCGs (Clinical Commissioning Groups) were replaced by ICBs in July 2022.
Some local B12 deficiency guidelines differ from BNF (British National Formulary)/NICE (National Institute of Health and Care Excellence) and BSH (British Society for Haematology) guidance on B12 deficiency.
Some UK local B12 deficiency guidelines are unhelpful. See blog post below.
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment.
Well done, 3rdNettydoon , it takes guts to present your case to a GP especially if it goes against what they are taught - and as you probably have realised, that's not an awful lot when it comes to B12 deficiency.
Well, med school education and curriculum change might be too big a battle for the energy-depleted to take on right now !
You got listened to. I sometimes think that the more aware GPs have seen for themselves over time that there is a mismatch between what they are taught, and what they are seeing for themselves - and what they are hearing from those with the courage to question treatment.
The NICE guidelines for PA/B12 deficiency are under review with new guidelines due in November this year. See the last link from Sleepybunny 's reply above. We are all hoping that this can make a difference to our treatment, and to the way this condition is viewed generally in both primary and secondary care. It can be made very much worse by late treatment, undertreatment or lack of treatment because the severity of this particular vitamin deficiency is so often underestimated.
We none of us knew what we were in for -but expected those we went to for help to have more of an understanding. Your GP at least has agreed to seek a specialist and PAS. Since medical specialists in this field seem few and far between, let's hope she calls the Pernicious Anaemia Society first - she will find plenty of valuable information there. Never too late to learn !
All you did was give your GP patient feedback about the effectiveness of the treatment frequency offered to you and hereditary health concerns for your family.
Thank you all for these encouraging replies. I have had a text message already stating that she has spoken to haematologist who said I tested negative for PA so its B12d I have. This after I have explained family history of PA. Even that my mams brother died from this.
Also want me to have another blood test in 7 weeks time just before my next inj. Im sure this isn't a long enough gap, but if I try to stretch the time gap, I dread to think how I will feel by missing an injection.
My reading last time, was 400+. I really feel after 4years of injections, that reading is still low. Also she said specialist to me, so I expected her to contact someone versed in B12d.
Why do doctors not know that about 50% of Pernicious Anaemia patients test negative for Intrinsic Factor Antibodies? (the test that is used to prove P.A.) There is a medical expression for this condition .
It is shocking that this is not common knowledge in the medical profession .
Maybe you could ask your doctors a question in letter eg"Have I got Antibody Negative PA?" and refer them to the flowchart above.
Writing a letter ensures that the information is in your medical records and maybe at your next face to face appointment you could ask GP if they could check your letter is in your medical notes. This should mean that they then have to look it up on their computer.
Perhaps you could then ask if they read about the family history and about Antibody Negative PA.
If you've got a copy of the local B12 deficiency guidelines for your ICB (Integrated Care Board) or Health Board, it's worth checking to see if Antibody Negative PA is mentioned and if it is then you could refer GP to that section of local guidelines.
I'll try to add a few more links later that mention Antibody Negative PA and that a negative result in IFA (Intrinsic Factor Antibody test) does not rule out PA.
PAS membership for health professionals
You could tell your GP that it is free for health professionals to join PAS as associate members.
That is great advice. Thank you. The page with my IF blood test results actually says in writing about the result not being totally reliable. I'm thinking that since it's been said that I dont have PA, then the doctor does not need to contact PAS. She may still do it and I am still hoping that she does.
Some GPs can find it difficult to cope with an assertive patient.
I had some difficult experiences but weighed up the risk of upsetting GPs against the risks of not getting treatment. Considering how ill I was and knowing I was going to get worst without treatment I felt I had to be assertive but always tried to be polite.
I felt it was vital to try to educate the GP and was very concerned about other B12 deficient patients at the GP practice.
My experience was that some GPs may not respond well to attempts to educate them but fingers crossed your GP will make an effort. I do think it was a good sign that she mentioned contacting PAS.
Maybe next time you see or speak to her you could ask her what the PAS said.
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