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"Pernicious Anaemia"

About: Barton House Group Practice

(as the patient),

I have had pernicious anaemia for 7 years, my surgery was amazing and identified it very quickly. I have read that many people are not so lucky and suffer for many years before receiving their diagnosis. Because I am unable to digest B12 from food, I was given loading doses of B12 at the onset and then 3 monthly injections which would be for life. I quickly found it wasn't enough and moved to 2 monthly injections. In the past few months I began to exercise to get a bit fitter, just using a stationary bike and some floor work. I also have vestibular disorder so it can't be strenuous or with too much movement . Just this exercise gobbled up my B12 and I was left exhausted,  with palpitations, fatigue, brain fog, memory problems, freezing hands and feet. I called my surgery, where I was given blood tests, which showed that my B12 level was a healthy normal, well over 500. I knew I didn't feel healthy and normal. Thankfully I talked to a GP at my practice, who let me have more B12 injections and am now having them every other day. The medical guidelines state every other day injections till symptoms disappear. I am one of the lucky ones, I have read so much in my research about the disorder, where  GPs do not have very much knowledge about it and are unaware that the serum B12 blood tests may not be useful to diagnose low B12 levels in someone with pernicious anaemia and no intrinsic factor.  I was able to explain myself through the research I had done and luckily had a GP who knew already and understood. The nurses are wonderful and a special lady on reception who always does more than is asked, gave me a list of appointments for the jabs. As you can tell I am very lucky to be a patient there.

The only thing I wish is that all surgeries were aware that the serum B12 blood test may not be an accurate reading for pernicious anaemia for those who have antibodies against the intrinsic factor.  They need to ask about the patients symptoms and act quickly before potential nerve damage is done and irreversible. I am a lucky one. Thanks to all the people at my surgery and I will always be grateful.

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Responses

Response from Vytautas Kazinavicius, Medical Administrator, Admin, Barton House Group Practice 2 months ago
Vytautas Kazinavicius
Medical Administrator, Admin,
Barton House Group Practice
Submitted on 27/05/2022 at 13:37
Published on Care Opinion at 13:37


Thank you for your generous comments. We really appreciate you taking the time out to share your experience with us. We really do endeavour to make every contact with our patients a good experience, we are glad that you are able to access your right treatments without much hassle. I will definitely pass this one to the team.

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Update posted by fatigue (the patient)

It feels good to know that everyone will see how grateful I am. Thank you.

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