I’m a newbie here! The doctor have confirmed my intrinsic factor is positive and therefore, I will need b12 injections for the rest of my life. This is not a complete shock, but I was wondering if so could do anything else to ease my symptoms, or recommend anything that will be useful to me at this stage. Any help will be appreciated. Thanks for reading. 😀
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Iheart_TS
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Good that you have got your diagnosis , and hopefully you have started your “loading doses “ of 6 injections over 2 weeks , It often takes several years to get a diagnosis, so it’s really good that you have one already . You should also be taking a daily 400 mcg tablet of folic acid ( also known as vitamin B9 or folate when found in green leafy vegetables , peas and fruits ) . B9 works together with B12 in the healing process If, after I completing the loading doses you still have any neurological symptoms, you should receive an injection every other day until no improvement occurs . Thereafter, an injection every 2 or 3 months .
In the meantime , till you have re-gained full health , do make sure that you have a good nutritious diet ( well that’s for all your life really !) and , try not to get stressed either physically or mentally. And remember that you have friends here , who have years of experience with Pernicious Anaemia, who are only too pleased to help you in any way . So be confident in that knowledge . You can lead a perfectly normal life with P.A. , so no worries there . You can gain lots of knowledge from just reading the posts on this forum . So , welcome Iheart_TS , and very best wishes . You have come to the right place .
Yes I have had the loading dose. I will go and buy 400mcg of folic acid/B9. The doctor has booked me in for my next dose, in September. I will also have a more nutritious diet (promise, I'll try). Thank you so much for your advice and support. I already feel reassured, I'll be okay and have support.
The first thing to do is that you get treated adequately. If you have any neurological symptoms - pernicious-anaemia-society.... - make sure you get given injections according to the British National Formulary (BNF - your doc will have an online copy). The correct protocol is -
Pernicious anaemia and other macrocytic anaemias with neurological involvement
By intramuscular injection
Adult
Initially 1 mg once daily on alternate days until no further improvement, then 1 mg every 2 months.
Then start keeping a log of your main symptoms. Give each a score every day at the end of the day. That will enable you to see how your treatment is affecting your symptoms.
Amazing advice! thank you so much. I will track my symptoms daily, I have purchase this book and have joined PAS. I will keep you updated and let you know what I think of the book too!
As well as folate , while you're asking, get your ferritin and vitamin D checked too. After folate, these are probably the most likely to be low or below range. Thyroid might be struggling by now if this has been going on for a while, too. Good to rule out.
GP and nurses didn't tell me much about what B12 does, or what a deficiency might feel like. Martyn Hooper's autobiographical chapter in his book was where I recognised myself and what I had already been going through, as well as what to expect next.
A bit of a relief that I wasn't alone - and very honestly written.
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