Pernicious Anaemia Society
15,504 members10,917 posts

Don't give up!

Hi all,

I just wanted to encourage all those struggling to get B12 treatment to not give up.

I have just looked at the date on my first post on the PAS forum. It was 3 1/2 years ago and I had been suffering for a while before.

To cut a long story short, I have had all the symptoms of B12 anaemia, including iron and folate deficiency for years. B12 levels have been as low as 256 but as above the reference range no treatment was offered other than anti-depressants. Over the past 2 years both my mum and my daughter were diagnosed with PA and started treatment. I had had enough!

I switched doctors surgery yet again and went armed with all the research I had done (I studied haematology at university and was very well aware of the UK reference ranges in comparison to many other countries). I argued my case and despite the family history the doctor argued that she couldn't treat every person within the reference range. However, she did agree to do her own research and get back to me.

Fast forward 3 weeks and a phonecall from the surgery telling me that the doctor wanted to discuss my B12 results. She had not been able to find evidence that reference ranges should be higher in the UK but had found evidence to show that some have symptoms at higher levels and have improved with treatment. She agreed to a 6 month trial of B12 injection and retest of bloods and discussion after that time.

I was ecstatic! It is so noticeable the difference the treatment has made, even to my family and colleagues. So, please don't give up, there are doctors out there willing to consider higher levels.


3 Replies

Such good news :-) However do show your GP the Guidelines that state testing whilst having injections or supplementing are of little or no value. I have read on this forum that when the results some back over range - due to supplementing - the GP withdraws treatment. This sadly happens more often than it should and demonstrates a lack of knowledge on the part of the GP.

Others will be along soon with more information and links for you ....


Thanks for the heads up Marz. I was initially asked to stop the1000mcg sublinguals i had been taking and then get retested. But considering my level of 256 on them and wanting to keep my job, I refused!

So, feeling the huge difference I do now I will definitely go armed with your info and fight to stay on the treatment.

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This is awesome. I'm so happy for you! You should be so proud of yourself for pushing for what you knew your body needed. Congrats!! And thank you for sharing your story here - it's always so wonderful to hear success stories. They really do give people hope (or me, at least!!).

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