Thanks to the wise advice I have been able to learn from here and take to my GP, my PA has been treated so far with x6 loading doses every other day followed by two injections a week for two weeks (this is where I am in the treatment currently) followed by 1 a week for four weeks before going on to 1 every 8 weeks. I still have significant pins and needles down the front of my shins and under my feet that have alleviated significantly but that I can still feel most of the time. I still have tinnitus. My symptoms however are MUCH improved (brain fog, numb fingers, off balance, hair loss to name a few). My question really is should I push for more frequent shots in the short term? I know the advice is to continue "until there is no further improvement" but the fight with the doctor is exhausting and I wondered if I am just being impatient and it will all take time?
More wise advice would be greatly appreciated, thank you.
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Hambledonia
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"PA has been treated so far with x6 loading doses every other day followed by two injections a week for two weeks (this is where I am in the treatment currently) followed by 1 a week for four weeks before going on to 1 every 8 weeks. "
UK recommended treatment for B12 deficiency WITH neuro symptoms is ...
A B12 loading jab every other day for as long as symptoms continue to improve then a jab every 8 weeks.
If you're in UK and your symptoms were still improving after the first 6 then my understanding is that every other day jabs should have continued until improvement stopped and not changed to 2 per week then 1 per week.
"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 UK b12 guidelines.
"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".
I am not medically trained.
More b12 info in pinned posts on this forum. I have written more detailed replies on other threads which may be worth looking at.
HI and thank you. Yes, thank you, I have seen these documents which helped greatly in being able to persuade the GP to give me loading doses in the first case. I guess I was hoping I wouldn't have to go in for another round of persuading her to continue the loading doses as it is exhausting in itself.
Hi Hambledonia it may pay you to ask to have your Folate level checked as this works with B12 and iron to make red blood cells and you may need supplementation with folic acid.
Thank you Clivealive, my folate came back as 10.4 (range >3) when I had my recent test after loading doses. Pre-loading doses it was 11. I don't know if this marks much of a swing? I also eat a high folate diet. Maybe I should take a low dose anyway?
Hi Hambledonia, you could always purchase the B12 shots online and inject yourself if you don’t want the hassle of convincing the gp to do more shots? Glad that you’re seeing a vast improvement!
Thank you Health1989. Yes, it is a great relief to have glimpsed that the B12 injections were working! Just have to pluck up the courage now to face the GP again. She has been sympathetic so far (mainly because my deficiency was flagged 10 years ago but not acted upon) but I was very disheartened last time I saw her when she said "what about HRT? Sometimes these things are triggered by the menopause". Great. No intention of taking HRT.
If you join PAS they may be able to intervene directly and at very least should be able to point you to info that you can give to your GP. Membership costs about £20 for a year's basic membership.
There is an article " An Update for Medical Professionals: Diagnosis and Treatment "on website, access to PAS members only, which some on forum have passed to GPs.
Hi Sleepybunny and thanks for your reply. I did indeed pluck up the courage to write to the GP and amazingly she rang me and agreed that I should continue the loading doses every other day. Such a relief. In the letter I recommended she join the PAS (I am a member myself) and I hope through this she can now help other people in the same boat.
It is such a relief to be a member of a forum like this.
Great news that you're back on every other day doses.
According to BNF every other day loading doses should continue until improvement stops if neuro symptoms present. Loading doses could continue for weeks or even months if improvement continues; BNF does not specify a set time limit.
BSH Cobalamin guidelines does discuss the possibility of a review of loading doses at 3 weeks but if improvement is continuing then as far as I know loading should continue.
It took weeks for me to see any improvement in any symptoms.
Might be worth you keeping a symptoms diary where you are recording improvements in symptoms as proof that improvement is continuing.
Thank you. I was also very daring and mentioned in my letter that she can join the PAS free of charge so fingers crossed she might and then inform the rest of the practice.
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