Good morning I don’t have Pernicious Anaemia but do have a problem with my B12 so sorry if this is an inappropriate post .
Briefly I have been taking steroids for PMR for 2 1/2 years along with Lansoprazole . This caused poor absorption of B12 and tingling , fatigue pale skin etc with result of 185 so had 6 loading doses .
My B12 has gone from 2000 in late 2023 , 819 in Feb 2024 and 411 in Oct 2024, I did have antibody test for PA which was negative .
I am currently really struggling with extreme fatigue , very pale and my sleep is dreadful due to my Restless legs which have gone from pretty good to off the scale in the last few months . Folate is in normal range , 7.8 Oct 2024.
My question , is that a rapid decline in my B12 levels or normal . I understand we can store it for a number of years .
Something else is going on apart from the PMR.
Sorry for long post and thank you .
happy New Year
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5goFlotilla
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Thank you Sleepybunny for so much information, GP’s are pretty good at my practice and always prepared to listen check bloods etc . I think my problem is exacerbated by having Polymyalgia Rheumatica which causes fatigue , joint and muscle aches along with side effects of Prednisolone . I am under the care of a Rheumatologist who agrees I am a bit of an anomaly and tends to focus on “Getting my steroid dose down , 3 1/2mg currently.
I feel it cannot just be one thing or another that’s making me feel this way . Just can’t find any info to gauge if my dropping g levels are normal .
Are you still taking lansoprazole? If so, then it's quite possible that your b12 levels are dropping too fast (the blood levels are very difficult to interpret once you've had some B12 and they don't seem to bear much resemblance to people's symptoms).If you're still taking lansoprazole, you should be taking an oral B12 supplement (if you're having difficulty absorbing B12 because of the lansoprazole then you should be able to absorb this).
Your symptoms do sound like they could be related to B12 deficiency (I had a bit of restless legs which has completely gone with treatment with B12).
Certainly worth a discussion with your GP, because you'll get symptom resolution faster with injections if it is B12 related. But if they don't want to give you injections, they try some tablets (1mg) instead.
Thank you Sailing lady , yes still taking Lansoprazole . Bit of a catch 22 really I was having such intense nausea that I had to go back on it , GP thought it could be being caused by long term Prednisolone .
I do have some Sublingual B12 tablets which I haven’t started yet incase my B12 needs checking again . I am sort of assuming if I am absorbing the B12 before it hits my stomach it may be more effective ????
You absorb b12 in the ileum which is a long way past your stomach. By all means hold off on taking the oral B12 until after a blood test, but if they decline to give you injections, oral should be ok if the lansoprazole is the only cause of the low B12.
Do you mind me asking why you are on Lansoprazole?
Some forum members are put on PPI drugs such as Lansoprazole for high levels of stomach acid and then find out months or years later that their issue is actually low stomach acid levels.
High stomach acid and low stomach acid have very similar symptoms.
Has your GP considered the possibility of low stomach acid?
Bicarbonate burp test might help people to see if low stomach acid is likely.
The medical term for low stomach acid is hypochlorydia.
Hypochlorydia can be associated with pernicious anaemia.
PAS (Pernicious Anaemia Society) website has some interesting blog posts
Published some years ago so some bits may need updating. These may be available from your local library service.
What you need to know about Pernicious Anaemia and Vitamin B12 Deficiency
by Martyn Hooper. former chair of PAS.
Could it be B12?
by Sally Pacholok and J.J. Stuart
Sally Pacholok is a US campaigner on B12 deficiency issues. She has some online articles and videos. Search for "Pacholok B12 deficiency" to find them.
Vitamin B12 Deficiency in Clinical Practice: "Doctor, you gave me my life back!"
by Dr J. Chandy (Kayyalackakom) and Hugo Minney
Other threads where I left detailed replies.
Patient Safety - Has links for those struggling to get treatment for B12 deficiency in UK.
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