I have been on B12 injections since 2017... Doctors surgery phoned today to say they are going to run a blood test for antibodies as it’s not been tested for a few years and are looking to drop the B12 injections... this was despite my last GP putting these injections from 12 weeks to 8 weeks. I challenged this am was told my B12 level was normal on last general blood test and if the antibodies come back normal they will be taking me off the injections ? I thought you were on these injections for life ?
Any advice ?
Written by
Harhun
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Yes , for life for Pernicious Anaemia patients . Trouble is that about 50% of P.A. patients test negative for the intrinsic Factor antibodies . Doctors should know this if they are up to date on their knowledge .Symptoms must be treated . Also they should know that once injections have been started , the B12 level will be high ,and must stay high Ask your doctor to Look up the very latest guide lines . I would write a letter to the G .P. , and the surgery manager . Look up all the advice that you can find on the right hand side “Information “ Do not let them get away with this disgraceful behaviour . Your health is at stake . I’ve had to resort to self -injecting . I have a positive IFAB test , but need more injections than the “ one size fits all “ treatment , and have to inject weekly . Best wishes .
Hi could you point me in the direction of the information I may require. I have been contacted again to say I’ve to have blood test on Friday and results will be in 2 weeks. I’ve not to bother with my injection that is due until then ... must be something going on as I’ve read a few Similar posts regarding the B12 being withdrawn lately...
plus my prescribing GP has just left the practice... so it’s basically someone working off a set of results with no prior history of issues and previous testing etc...
Link above has letter templates that people can base their own letters on.
I think it is more effective to put queries about treatment/diagnoses into a letter to GP and possibly copied to practice manager.
In UK, letters to GP are supposed to be filed with medical notes so hopefully are less likely to be ignored than info passed on verbally.
Useful to have a paper trail in case there is a need to make a formal complaint. I think it's wise to keep copies of any letters sent and any replies received.
May be worth drawing GPs attention in any letter or conversation to the risk of permanent damage to spinal cord if B12 deficiency is untreated or under treated.
MPs and devolved representatives may be worth talking to if struggling to get treatment.
Symptoms Diary
Might be helpful to keep a daily symptoms diary which tracks changes in symptoms over time and if and when any treatment is received, Could be useful evidence to show GP if experiencing deterioration in symptoms.
Have a look at my replies in the thread I linked to below which has links to B12 deficiency symptoms lists, causes of B12 deficiency, B12 books, more B12 websites, UK B12 documents and other B12 info including some hints on dealing with unhelpful GPs which might be useful.
UK forum members have reported problems getting their B12 jabs during pandemic eg injections have been stopped/delayed/ frequency reduced or swapped for oral tablets.
I left a detailed reply about impact of pandemic on B12 treatment in UK in next link which might be of interest if you're UK based.
If you had intrinsic factor antibody test at any time that came back as a positive result , it is 95% correct and so you are IFab positive. Why are they retesting after a few years?
Your B12 was normal ? How normal ? Isn't attaining a normal reading the entire point of injections ? My last serum B12 reading was over 2000ng/L in 2016- and was never tested again as GP said it was pointless. She checks folate, ferritin, vitamin D and thyroid as these were all quite unstable. Not unusual with B12 deficiency.
Helping you to get symptoms brought under control -or having failed that, at very least reduced to manageable - that surely is the long-term goal. Who will be responsible for this, now that you have lost your usual GP ? That might be a question worth asking. Who is to take over continuity and monitoring your condition. After all, if pernicious anaemia, this is incurable.
I think you need to first ask for a copy of these results so that you can see what they are looking at and why they are making these decisions.
Take someone with you to meetings or appointments if possible. Helps you keep track, allows for a confirmation re symptoms, a witness, and for morale. If you have cognitive or memory problems, this can be essential.
Have you got a list of your symptoms ? Have they got this on record ?
I would start keeping a daily record of your symptoms: frequency, severity and show where B12 injections given. I notice Sleepybunny also thinks this might be effective- she probably advised me to start one 5 years ago! A pattern could emerge that would help support your case for more injections. If they do stop your injections, keep the record going to prove how you are managing (or not)without them. At the first sign of any recurrence of neurological problems, go back.
I too have been told to go for an antibody test on 14th September. I have been having B12 injections every 10 to 12 weeks for over 20 years. Its never been questioned before! I am not happy and am becoming increasingly anxious about it. I started to self inject when my injection was late during lockdown (every week) but am now worried that this will have an impact on the test so have now stopped. I will be asking for a copy of the results before I discuss with the GP. Please let us know how you deal with this and how you get on.
I will do, I am the same I managed to do B12 injections during lockdown. Stuck to one a month. Surely your level should be elevated anyway if you are receiving the supplement of injections? To make matters worse apparently it was a Pharmacist who has recommended that it my results are “normal range” I should stop receiving the B12 🤷♂️
Yes my B12 levels will be high but I am having the Intrinsic Factor test and I think Parietal Cells - am not sure if additional injections will affect these tests. I would write to your GP - a pharmacist should not be making such recommendations surely!
If you've ever had a positive result in an Intrinsic Factor Antibody (IFAb) test it is likely you have PA.
Might be worth getting hold of proof of any positive IFAb test result/previous diagnosis of PA.
If you were told in the past you had PA, don't be shocked if there is no record of this diagnosis in your records. Some forum members whose B12 injections were stopped were told there was no record of original PA diagnosis when they challenged the decision.
I have had PA since 2003 (when diagnosed but think l have had it since l was 18), I was told it was for life, my problem is my gp in 2003 has mislaid blood test (due to going from papers records and changing electronic systems), my present gp was okay giving me my injections every 11th week, although really l needed them every 9, but due to Covid-19 they are using this as an excuse to retest me, l won't agree to the retest, so have brought B12 patches (1000 mcg), at first l tried 500 mcg, but my symptoms got worse, the 1000 is okay but is not as good as the injections, l am trying to find them on-line with everything included, so l can self inject , although l don't like needles but I would inject to get a better quality of life and be symptom free!
Just out of Gp Surgery... practitioner nurse took the bloods, ask to speak to the Pharmacist regarding the retesting... she wasn’t available. The practitioner nurse booked me back in for 8 weeks and said she didn’t think they could stop this after 3 years ... and the results will be high due to being on regular B12 injections...
I’ve to make an appointment to discuss with a new Gp that’s been appointed to me since my regular one has left the practice...
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