B12 Prescription: Hello everyone. I'm... - Pernicious Anaemi...

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B12 Prescription

Kyle3 profile image
7 Replies

Hello everyone. I'm current undergoing loading doses- one more to go (6 of 6) next Tuesday. I'm awaiting the results of anti-intrinsic factor antibodies blood test. My last blood test apparently indicated my B12 level was "a bit low". A while after getting the blood test results, I started to feel really bad, went the doctors with a range of B12 deficiency symptoms and starting on loading doses . I feel like myself once again, not quite there yet but seems like I'm getting there.

Anyhow it was agreed that after loading I could keep having B12 injections at regular intervals. It seems like I am in slightly unusual circumstance as I havent been diagnosed with anything as such- so was told this would be for a year. Which I'm fine with- I have stomach issues- and am waiting for an endoscopy. Which when it eventually happens will hopefully provide an definitive answer - (I suspect its coeliac but who knows at this point.)

I've picked up a repeat prescription and found an unexpected extra repeat prescription form for Hydrocobalamin 1mg/1ml solution for injection ampoules, 1 ampoule use as directed.

Would I be expected to pay and collect the prescription for B12 then book in at the doctors for the injection? I guess I'll find out for next week but whilst I've become a proficient receiver of b12 injections (practice makes perfect). I can't say I'm too keen on injecting myself

I suppose doctors surgeries vary- but any insight into how this 'normally works' would be really helpful please.

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Kyle3
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7 Replies
Carolyn1964 profile image
Carolyn1964

Hi there. Your repeat prescription will be for the nurse or phlebotomist to administer - you just take along the file and they do the rest

Kyle3 profile image
Kyle3 in reply toCarolyn1964

Thanks, thats good to know.

fbirder profile image
fbirder

When you go for the endoscopy make sure they know that you have a B12 deficiency. If they know their stuff then they'll look out for Autoimmune Metaplastic Gastric Atrophy (AMGA - the condition that actually causes Pernicious Anaemia). Your anti-IF test, if positive, is a definite indicator for PA. However, the test is pretty inaccurate - 50% of people with PA show a negative result.

So if the gastroscopy shows AMGA, that, combined with your low B12, is a good indicator of PA. Which means you need injections for life - not just one year.

Whatever the outcome, your doctor may be tempted to retest your B12 levels after a year - find that they're high (not surprisingly, as they've been pumping the stuff inside you) - then stop your injections.

My summary - frankhollis.com/temp/Summar... - has links to expert documents that describe the futilty of testing once supplementation has started, the unreliability of the anti-IF test and how PA requires treatment for life.

Kyle3 profile image
Kyle3 in reply tofbirder

Really good info thank you- when I get to hospital I'll mention B12/AMGA, with hindsight its naive to expect them to be fully up to speed on my medical history.

Also the summary document is very useful. I did give it a read through a while back with the benefit of feeling much better i'll take another look. Thanks again

Secondchance profile image
Secondchance

Try to get your prescription changed to pack of 5 or better still 10 as same prescription charge will apply for one! Glad you're feeling better. How often were you told to get it? If neuro symptoms then at least every 2 months according to guidelines, although some GPs can be persuaded to give more often for symptom relief. Having a symptom diary helps with that.

Gambit62 profile image
Gambit62Administrator in reply toSecondchance

I also have one on my repeat but it is filled out by the nurse in the surgery and there is no charge for it as it is done at the surgery - no need to take to a pharamacist to fill so no charges.

Kyle3 profile image
Kyle3

Last injection was today. Asked about the prescription form- apparently it doesn't need to be brought next time, just a result of them 'entering me in the system'- as they need a prescription to be able to administer B12. Was given a standard 12 week date to return. Still quite fatigued but certainly slightly improved on before and I seem to be a bad mood most of the time. Other than everything seems to be fine now, although i'll have to watch out for backsliding.

I'm expecting IF test results in the next few days. Not expecting anything useful from that although will be a chance to speak to a doctor again. On the plus side the repeat prescription i'd previously picked up for omeprazole remains untouched. I was 5 weeks on 40mg. Decided to cut down with a view to stopping- spent 2 weeks on 20mg and today is 7 days on nothing at all.

My suspicion is that it accelerated the decline of my b12 level which was low due to poor digestion to begin with. Originally ended up on them due to bad heartburn/acid reflux. Currently trying a few different things out that are recommended for low stomach acid like apple cider vinegar. So far, so good. Got moderate heartburn now and then (easily tolerable). I've got considerably less stomach trouble now than when I was taking 20mg a day.

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