Update on: GP stopping my B12. Replac... - Pernicious Anaemi...

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Update on: GP stopping my B12. Replacing with oral B12.

Holly2201 profile image
8 Replies

UPDATE: Hi everyone. Thanks to everyone who responded and advised me. I had the telephone consultation with my GP today. I have now had the decision to replace my injections with oral medication reversed.

This is the gist of how the consultation went (excuse any lack of knowledge/understanding at times): I said what I had been told by the nurse at my last injection "that only those with diagnosed PA would receive lifelong injections from now on" and she said "yes, that's right"? I asked why I had originally been diagnosed with PA and now this is no longer the case. My GP explained that although she had given me literature on PA at the time of B12 deficiency diagnosis, this was just to highlight the signs and symptoms of PA. However, my intrinsic factor test was negative. ?? It appears then that those with negative on this test at my surgery will be switched to oral from now on.

I said how my initial symptoms of numbness in legs when standing/unsteadiness etc, which increased in frequency to around 8 times a day had responded well to the injections initially. However, they always return around 7-8 weeks after an injection - albeit, not as frequent as before receiving injections. I had previously discussed this with her and as a result she referred me to a neurologist. I quoted the neurologists report confirming severe symptoms due to prolonged deficiency of B12. I also quoted he was happy to see me again should the symptoms not clear up totally and he would conduct further investigations/scans. I said I was very concerned that oral medication doses would not be high enough to treat or sufficient enough due to me continuing to have the return of neurological symptoms prior to my next injection.

I quoted the UK guidelines stating that the only recommended treatment for those with neurological symptoms is via B12 injections. I said I had read how under-treated B12 deficiency can result in potentially irreversible neurological damage - sub acute degeneration of the spinal cord. I quoted the BNF prescribing guidelines stating that those with neurological symptoms should receive a maintenance dose of B12 every eight weeks - not 12. She said she hadn't heard of the eight week prescribing and had always prescribed on a 12 week basis. (Hopefully she will now go and have a look for herself). However, I plan on visiting her in the next few days on a different matter and I will bring a print out of that then to show her.

Since all of your help and advice on here I decided to look into other causes of B12 deficiency, I came across information on how previous stomach surgery can result in malabsorption issues. As I myself had bowel surgery twice a long time ago, I informed her of this. She wasn't aware of it, (although it's in my notes) and immediately said that as a result, I could continue on the injections as this is most probably the reason for the long-term deficiency.

Next steps:

Before my next (12 weekly) injection is due she will check B12 levels to look for signs of any trough and to determine whether more frequent injections should be given. She will also check: folate; intrinsic factor and celiac. She said that should these all appear okay, she will refer me back to the neurologist for further investigations/scans.

I understand this is not over for me as I know I need more regular doses and may well resort to self injecting, however, I am relieved of my biggest worry - that my symptoms will return in full force. Again thank you everyone who helped with this.

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Holly2201
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8 Replies
Foggyme profile image
FoggymeAdministrator

Hi Holly2201. That's fantastic news. Well argued and very well done by you. But how annoying that it was necessary.

Hope your GP is aware that testing serum B12 following injections is not recommended...or necessary. Treatment should be based on symptoms only...and if you have symptoms that return before your next injection and then resolve when you have the next jab, then that's a clear indicator that you need more frequent injections.

And if you have neurogical symptoms, you should receive injections every other day and then go on the eight weekly regime once there is no further improvement (though as you know, this is not sufficient for some people so...oh if only GPs would treat according to symptoms. 🤷‍♀️🤦‍♀️

Think you have the right idea...if GP will not prescribe enough injections to keep you well and symptom free, then SI in-between getting as much as you can from your GP 😉😀.

Again, pleased on your behalf...and that's one more GP being educated. Hurrah for that 😊.

Will watch out for further updates xx

P.s. yep...bowel surgery x two could indeed be the cause

Gambit62 profile image
Gambit62Administrator

Thanks for the update - glad you had a success of sorts - hope that you manage to get 8 week injections.

clivealive profile image
clivealiveForum Support

That's brilliant news Holly2201 Well done for persevering.

What you said about your bowel surgery made me wonder how far down my "notes" my partial gastrectomy which took place 59 years ago is placed :)

Wagonwheel profile image
Wagonwheel

Well done!

npc0823 profile image
npc0823

Well done! Your confidence and perseverance is really inspiring! Thank you for sharing this update.

Sstephens profile image
Sstephens

Awesome!!! Good for you.

jib70 profile image
jib70

Well done for your perseverance Holly. j x

Siglan profile image
Siglan

Yes, very well done.

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