Pernicious Anaemia Society

Oh Dear I think have rattled my GP with request for action on low B12 discovered by chance 10 months after test

I am 56 yr old female. In last two years diagnosed with Hypothyroid, Severe OSA, COPD. On CPAP a year and thyroxine 2 years.

Other drugs too numerous to list but Omeprazole and Lansoprazole are included. 4 years on immunotherapy/chemotherapy and steroids for Uveitis ending 2015.

This month had SVT for 9 hours with heart rate of 200 throughout, into casualty and treated with drug that stopped it.

I am completely wiped out all the time, have mobility issues with very painful joints now and genuinely think I am going crazy. Strange dreams, hallucinations, paranoia etc etc etc. Stomach issues long term. Severe sleep apnoea with 63 events per hour! COPD - on loads of drugs for this.

Frankly I am sick to death of it all now and want a life.

Recently seen by rheumatologist prior to starting anti TNF for uveitis. HIs letter to GP said I had a low B12 of 249. I asked him when this result was from. Response that it was September 2016!! and was 149 , not the 249 stated in his letter. I knew nothing about this result but when I researched low B12 I was shocked by the range of thus far unexplained symptoms that I have had for some time. SO I rang GP to ask whether I should come in for a retest after finding out that GP did this test and had this result that they didn't share with me. Rang GP again today to push someone to decide on me coming in for a retest and treatment plan. 7:45 pm - several calls from GP to landline and mobile (I was napping).message went on about how level was borderline ( not according to research and guidelines I have seen today) and that other blood results didn't ring any alarm bells so not a big issue........but ring in If I want to discuss. Yeah I want to discuss ! I get the impression that I am going to have an uphill battle from the off given the GPs dismissive tomes - which I understand is common for patients with B12 issues.

When you see the damage low B12 can do and the ignorance of the medics we rely on It is a worry. I wonder how hard I will have to fight to get correct tests and treatment and whether I have the strength for the potential conflict.

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Oh and I had to give up work in January because of my health issues. so that's me finished!

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Oh Dear, Oh Dear, Oh Dear MollyMoo53 your thyroid problems and PPIs alone put you at risk of developing a Vitamin B12 deficiency.

Ask your doctor to treat you in accordance with the N.I.C.E guidelines for the treatment of Vitamin B12/Folate deficiency and if he's never heard of them tell him to look at his British National Formulary (B.N.F)

Click on the link below, then on "Scenario: Management" and scroll down

google.co.uk/url?sa=t&rct=j...

Please also ask to have your serum Folate tested.

I'm not medically trained but one who lived with P.A. (a form of B12 deficiency) for nearly forty years in complete ignorance of "what it was all about" as I never knew anyone else with it and none of the succession of nurses who gave me my injections, nor doctors I saw for other reasons ever asked me how I was coping. Six years ago I joined the Pernicious Anaemia Society and quickly learned that "I was not alone"

My heart goes out to you.

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Dear clivealive

You may not be medically trained , but you know more about B12 deficiency than 99% of doctors !

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refer your GP to the BCSH guidelines if UK based and draw their attention to the following

a) serum B12 will miss 25% of people who are B12 deficient (and pick up 5% who aren't) if used as a single measure - such is the extent of how people vary

b) 25% of people with B12 deficiency do not present with macrocytosis (larger rounder blood cells).

c) recommendation is to treat according to symptoms if a discordance between test results and symptoms - particularly if patient has neurological symptoms - to avoid the risk of permanent damage.

onlinelibrary.wiley.com/doi...

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