PA/MPN correlation: Hi there! I have... - Pernicious Anaemi...

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PA/MPN correlation

Kittywithin profile image
14 Replies

Hi there! I have been having B12 injections every 3 months for the last ten years or so. I was recently diagnosed with MPN ( though I don't have the Jak2 mutatation) . My bloods have been 'odd' for many years, but I was only diagnosed with MPN when I changed surgeries a year ago. My new surgery are doing the 'watchful waiting' approach, which I understand, but my B12 bloods were 167 at my most recent test. I just wonder if anyone knows how much correlation there between PA and MPN? Is there anything I should be asking my GP about? Or is watchful waiting the answer. Thank you folks! Best wishes to you all! :)

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Kittywithin
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14 Replies
Nackapan profile image
Nackapan

167 seems very low on b12 injections perhaps 2 monthly would be better? MPN I've not heard of ...will await others to enlighten me

Kittywithin profile image
Kittywithin in reply toNackapan

Hello.! Thank you for your response, I think I will have a word with my gp to see if they will increase the frequency . And , sorry, MPN is myeloproloferative neoplasm. My GP is very lovely, but always suitably vague whenever I ask about it :)

MPN is often associated with B12 deficiency, folate deficiency and iron deficiency anaemia. Your GP has done extremely well to have spotted it which suggests they’re pretty good. Your b12 is very low for someone on injections even as far apart as 3 months and that may be something to do with your diagnosis. If it were me I’d be asking for a referral to a haematologist and I’d want to know more about what the plan was and why watchful waiting is appropriate.

Kittywithin profile image
Kittywithin in reply to

Thank you very much Martin, that's really useful to know! I absolutely agree that they were very good when they picked it up, my previous GO's often commented on my iffy blood results over the years , but never really looked into it until I moved to my current surgery. Next time I go, I will definitely enquire about a review with a haemotologist . Thanks again :)

jointpain profile image
jointpain in reply toKittywithin

Maybe join the mpn voice forum here on healthunlocked. My wife has Myelofibrosis (an MPN)

Kittywithin profile image
Kittywithin in reply tojointpain

that's great, thank you, I'll certainly check out the Mpn forum.

fbirder profile image
fbirder in reply to

I can't find any association between MPN and B12, except that it seems MPN might cause high levels of B12 and a functional deficiency. sciencedirect.com/science/a...

fbirder profile image
fbirder

167 is very low for somebody injecting. Was that a normal serum test or an Active B12 test?

Kittywithin profile image
Kittywithin in reply tofbirder

Hi there. It was serum B12 level. My serum folate was also slightly low at 2.3. The test was done literally just before I had my 3monthly injection , so that could explain it? I've never heard of an active B12 test? This forum is very enlightening 🙂

in reply toKittywithin

I’m not sure but there is a connection between B12 low folate and IDA and that’s why I think you need a medical opinion. There appears to be some evidence that correcting your levels will help with symptoms but I’m not a medic.

EmfiTa profile image
EmfiTa in reply tofbirder

HiDo you know what b12 should be if injecting regularly, say once a week. I'm PA. Thanks

in reply toEmfiTa

It will be different for everyone but after a period of several weeks I would expect it to be over the top of most lab ranges. I know mine is.

Skeeter1956 profile image
Skeeter1956

Hi Kittywithin you might want to join MPN voice , another site on Healthunlocked . It might be of interest to you , if you are not already a member .Best wishes Skeeter .

Kittywithin profile image
Kittywithin in reply toSkeeter1956

Thank you very much, it was mentioned by another member, and I'm very grateful to have found this site 😀

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