Iv been having b12 injections for 15years every 10 weeks. I had a doctors appointment 3 weeks ago due to feeling tired and generally not 100% I’m a very active person & eat quite well .
They gave me a blood test and the results say my b12 is high ( not sure what levels are ) and also my ferritin levels are high !!
They’ve taken me off my b12 which I had every 10 weeks and they are re-doing my blood test in April, then they also said in 6 months ,I’m feeling quiet nervous as I’m positive I new when I was due my b12
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Jmv12
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you are right that your treatment should not depend on B12 levels and the injections should be for life. The BCSH guidelines say that retesting of B12 levels is not necessary after loading doses.
Do you have the blood tests that they did - and did they include thyroid?
Hoping someone else will be able to respond with more detail of papers to refer to but you might find it useful to look through the pinned posts for information to share with your GP
And now know what questions to ask ,I was just so shocked and worried as originally they were going to leave me for 6months then check .Till I spoke up ,also I’d only had my b12 injection one and half weeks previous.So the reading would be quite high
Do you have a PA (Pernicious Anaemia) diagnosis or do you suspect you have PA?
If yes, I suggest you consider joining and talking to PAS. PAS can sometimes intervene on behalf of their members.
PA requires lifelong treatment and there are other causes of B12 deficiency that require lifelong treatment.
If you're in UK and you have neuro symptoms, B12 jabs should be every 2 months whatever the cause. See BNF, NICE CKS, BSH links below for details of UK B12 treatment.
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with most UK b12 guidelines but does not mention recent BNF change.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
Help for GPs
1) PAS website has section for health professionals. They can join PAS for free. Perhaps your GP would be interested?
2) I gave my GPs a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and B12 Deficiency"
3) PAS leaflets, access to PAS members only.
"Treatment is for life"
"An Update for Medical Professionals: Diagnosis and Treatment"
Some forum members have found their area of UK is using outdated local B12 deficiency guidelines. Might be worth trying to track down local area guidelines and comparing them with national guidelines.
"They gave me a blood test and the results say my b12 is high ( not sure what levels are ) and also my ferritin levels are high !!"
The best advice I ever got was to always get copies of all blood test results. These days I don't trust what I am told about results unless I have a copy in my hands.
If your need for B12 is lifelong (PA is not the only cause that requires lifelong treatment) then stopping your injections is potentially increasing the possibility of neurological damage.
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