A win!!: Hi, I haven't posted here for... - Pernicious Anaemi...

Pernicious Anaemia Society

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A win!!

KJP723
KJP723

Hi, I haven't posted here for a while but wanted to update with some good news.

My injections were stopped 4 years ago and at the time I didn't question it. Since that time I have been gradually feeling worse and I went to see my GP in March this year. My b12 blood result came back within the normal range, my doctor wanted to diagnose CFS but after a conversation with Martyn Hooper and some helpful responses on here I decided to challenge my GP's decision. I wrote to my GP on 30th May with lots of information from NICE and BSH, I had my appointment today to discuss the letter and I am happy to say he has decided to reinstate my injections starting with loading doses. He wants to meet again in 6 weeks time and if I've noticed a difference in the way I feel he will give me a diagnosis of pernicious anemia with injections for life! I was so relieved I cried!

Keep fighting, it's hard when you feel dreadful but I'm so glad I didn't give up!

Thank you for the responses I received on here they helped immensely.

8 Replies
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clivealive
clivealiveForum Support

That's brilliant good news KJP723.

Was your Folate level checked as this works with B12 and helps your iron to make red blood cells among other functions?

KJP723
KJP723 in reply to clivealive

Thank you. My folate was too high and my iron was only just within normal. I stopped supplementing with folic acid a couple month ago but have increased natural sources of folate. I've started supplementing with iron as well.

Well done.

Good to hear of another doctor at listens.

Foggyme
FoggymeAdministrator

Hi KJP723. That's fantastic news. Well done for persevering when you were feeling so very unwell - and well done your doctor for reading your letter and evidence - and taking action 😊.

Looking back, I see you have neurological symptoms so...as always...after the loading doses (and according to all the guidelines) you should have every other day injections until no further imrovement...then injections every sight weeks (though that's not enough to for some people - but that's another story 😉).

Hope that the re-instalment of injections will bring about much needed improvements to your health....PDQ.

Take care and let us know how you get on 👍

KJP723
KJP723 in reply to Foggyme

Thank you. I genuinely had no hope that he was going to give me injections, I was so shocked I just took it. If I don't feel enough of an improvement I will push for injections every eight weeks.

Thank you so much for your help.

Foggyme
FoggymeAdministrator in reply to KJP723

Good for you KJP723. Oh, and...after the loading doses...every other day until no further improvement...then every eight weeks.

When neurological symptoms are present, going straight to eight weekly injections following the loading doses may not be frequent enough. If on eight weekly, you'll know if that's happening because symptoms will return before the next injection is due - always best to have injections before symptoms return 😊😊.

Good luck 👍👍

Well done for not just giving up! Glad you have got a good result.

Great news KJP723,

Hopefully that's another GP educated and perhaps more of his/her patients will benefit .

Links about UK B12 treatment ......includes info on treatment regime for B12 deficiency with neuro symptoms mentioned by Foggyme above.

1) BNF (British National Formulary) Chapter 9 Section 1.2

bnf.nice.org.uk/drug/hydrox...

cks.nice.org.uk/anaemia-b12...

UK GPs are very likely to have a copy of BNF sitting on their desk or bookshelf. A kind GP might show it to you.

2) BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Info on UK B12 treatment is about a quarter through document.

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