Hi, I was diagnosed with PA 20 years ago and have been having injections ever since every 3 months. I don't seem to have any symptoms so 3 months seems ok.
My test results have always been over 500 mg /L and they have always given me the b12 without any fuss for the past 18 years!
However last year they insisted on giving me a b12 serum test, which was about 547 mg/L so they stopped the injections. I printed off the NICE guidelines, saw the doctor and they agreed that they will give me injections every three months for a year. Then they were stopped for a while because of covid. Phoned up last month and told that they would only give me the b12 after being tested.
Test came in at 583 mg /L , so they have again said that I do not need it as my levels were high enough and was told to wait 3 months and then be retested.
I have now given up with the doctor and told them that I will get it from Germany and self inject.
I do feel that I should send letter to the practice manager asking why they are not keeping with NICE guidelines
Written by
Tonyworks
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I’m really shocked to hear what has happened to you after having had a diagnosis of Pernicious Anaemia 20 years ago . It is a fact that P.A. patients will need B12 injections FOR LIFE, and that it is a waste of time to test for B12. once injections have started. .Do write to your G.P and the surgery manager . The guidelines should be observed , and your injections re-instated ASAP . As a member of P.A.S, , you can get help with this if it doesn’t happen .
If you get desperate , yes you will certainly want to self inject . I was desperate , and found out how to obtain B12 Hydroxocobalamin ampoules , and all the necessary, because I need weekly injections to stay well .
The stopping of injections has suddenly started all over the UK , and some higher authority should be looking after the health of P.A. patients .
If you decide you have to self inject , I will give you all the information you need . It’s is simple and cheap ( costs about £1.50 for an injection, everything included ). Because you have P.A, B12 tablets are useless to you , because you cannot absorb them , as you lack the necessary intrinsic factor and stomach acid , due to antibodies which destroy your parietal cells. It is outrageous that this is happening to P.A. patients . I cannot understand it .
Good that you came to us . You have friends here , who understand what you are going through , and will help you . Best wishes .
Hi, thanks for your kind reply. I have actually started self injecting. I got all I needed from an online German site. In fact it is better and easier than going to the doctors. I was diagnosed using the schilling test in 2020 and I have still got the original report that states that I have PA and will need b12 injections for life! So what has changed. My GP suggested that it may not be as bad now and that I only need b12 injections when my "level" gets low. He has not told me what this low level is but I think it must be very near the bottom limit. I am going to refuse to take anymore b12 serum tests for no reason.
Good to see that there is still help for us in this forum
Trouble is that your doctor needs to know that his information about P.A. is totally wrong . More P.A. patients are going to suffer because of his/her ignorance unless he/she gets correct information ..Good luck and look after yourself .
Wow that’s shocking. No wonder they won’t treat anyone with ‘only’ a b12 deficiency if they won’t even treat PA! Glad you are sorted with injections at least although a shame to have to battle with your GP.
You could draw GPs attention in any letter or conversation to the possibility of permanent damage to the spinal cord if B12 deficiency due to PA or other causes is left untreated or under treated.
May be worth talking to MP or devolved representatives if struggling to get recommended treatment.
I wrote very detailed replies on another forum thread with links to B12 deficiency symptoms lists, B12 books, B12 websites, UK B12 documents and other B12 info including some hints on dealing with unhelpful GPs which I think you might find helpful.
If you read the blog posts and PAS news items I've linked to on the other forum threads, it's worth having a look at people's comments underneath. for example this one...
There were 98 comments under the above PAS news item.
You are definitely not alone in what you're experiencing.
Some forum members feel their only option is to self treat. My personal opinion is that this is a last resort but I was driven to it when unable to get any B12 treatment.
Many thanks for all your replies in this forum. You have helped me and many others. I have joined PAS. They are very helpful!
However it is very difficult to go against your own GP. His comment was "who are PAS?". I think he is of the opinion that it is just internet gossip. As soon as I mentioned that I downloaded some documents from them, he took them then seemed to ignore the contents.
I agree with your comment "However it is very difficult to go against your own GP" but I'd also add that sometimes it is necessary.
If I had just accepted the responses and comments from the GP practice I was at when my symptoms were at their worst, I am quite sure that by now I would have dementia and spinal damage.
I had dementia type symptoms and pins and needles in my spine when I left that practice.
They put subtle pressure on me to leave and I got a signed letter suggesting I go elsewhere so don't be surprised if being assertive and asking questions/writing letters affects your relationship with GPs.
Any difficulties in relationship with GPs has to be weighed against the potentially severe consequences of not getting adequate treatment.
Letters to GP
Putting queries about treatment/diagnoses into a letter to GP means there is a paper trail which is useful in case there is a need to complain in future.
Keep copies of any letters written.
If a patient comments in a letter that they are concerned that they may develop SACD (sub acute combined degeneration of the spinal cord) due to lack of treatment then GP surgery can't say they weren't warned if patient actually does develop SACD. .
Symptoms Diary
Are you keeping a symptoms diary that tracks changes in symptoms over time and when and if treatment is received. May be useful evidence of improvement or deterioration in symptoms to show GP.
I'm guessing that some symptoms are coming back since your treatment was stopped.
Make sure GP knows about any neuro symptoms that you have now including any that have returned since treatment stopped or new ones that have developed.
Believe the Pernicious Anaemia Society -as they are far more aware of the guidelines that GPs are supposed to follow than some GPs appear to be. This is because they have had to be, in order to help all those people with B12 deficiency who have recently had their B12 injections stopped erroneously.
Your GP appears also to believe that your incurable PA condition is getting better on it's own. Ask him to explain how that is possible.
Of course he wouldn't know about the PAS. The founder helped advise on the latest revision of the NICE guidelines for B12 treatment during the pandemic - and he hasn't a clue about those either.
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