Pernicious Anaemia Society
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Posing a question

Posing a question

Good afternoon,

I have never been diagnosed with Pernicious anaemia, I have an underactive thyroid and diabetes, amongst other things.

I have been on 3 monthly injections for the last 4 years and my levels have never really improved and I was wondering if there was anyone out there who has managed to get their doctor to do their injections more regularly as mine wont.

I have posted my most recent tests.

Thanks for your help in advance.

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how long after your B12 injection was the test taken?

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I had my last B12 on the 18th of May and this test was done on Monday.

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so that is about 6 months - is this the normal time-scale for having your tests done - and half way between your injections.

the results are lower than I would expect for someone on B12 shots - the amount that is given to you in a shot is about 3 years worth of B12 - it is gradually removed from your blood by your kidneys - about half of it goes in the first 24-48 hours and then the rate of loss gradually decreases.

Suggest that if you aren't already a member of the PAS that you join them and then contact them - they will be able to help you with how to explain to your GP that your treatment is not adequate - and if you have neurological symptoms (eg pins and needles) definitely isn't the correct treatment - as maintenance should be 8 weeks if there is neurological involvement. They can also help follow up with GP if a personal contact from you doesn't work

pernicious-anaemia-society....

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It's been just over a month since my last injection and the bloods were taken on Monday, so I still have just under two months to my next injection.

They don't usually test my B12 at the doctors, this was just a private test I had done with my thyroid which included B12.

Thank you for your advice, I'll will have a look at the site and contact them :)

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I am getting my injections every six weeks. It took a while to convince my GP, so my husband came with me for a double appointment. I had a list of all the continuing symptoms, and initially I asked if she was prepared to give me a trial period of more frequent injections. This was agreed to and after having approximately eight injections every six weeks I made another appointment to see her. I again took a list with me of all the improvements in my symptoms. I asked if I could pay for the additional injections as it had made such a difference to how I was feeling. She told me that wasn't necessary and marked up my records to include the six weekly injections from then onwards. I am extremely grateful that she was prepared to agree to the trial.

Perhaps you could try this approach with your doctor?

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