B12 deficiency in MF patients

[Rachelthepotter]

pubmed.ncbi.nlm.nih.gov/257...

Hi. I think I’ve posted this before, but worth re doing as B12 deficiency js nasty, but very fixable.

Here in the UK, the only tests available for B12 are the standard blood serum test, it seems, which regularly shows very high levels. if you have MF.

I’ve managed to persuade my current GP practice to give me monthly B12 injections, My aim is to keep everything ticking over as well as I can, while the MF continues on its way.

Have been on rux for 5 yrs. Latest bloods showed only JAK2: I’ve had a variety of other mutations show up at various times. Do mutations come and go? Seems strange.

Thank you for the replies about the low blood pressure – I’m having some technical problems at the moment but I hope that this gets through. All the best Rachel

[hunter5582]

I also have a measured Vit B/Folate deficiency, along with Vit D and magnesium deficiencies. fortunately, oral supplements bring the levels within normal limits. You are quite correct about how harmful Vit B/Folate deficiency can be, Amongst other things, it can harm your brain/nervous system. It is unfortunate that more attention is not paid to this issue. I think you are very wise to have pursued this issue. You prove the adage that assertive patients receive higher quality care.

[Amethist]

thanks for the link to the paper. Very interesting.

I can definitely recommend the book “Could it be B12 deficiency?” by Sally Pacholock too. Full of great info. B12 is so important for many things and a lack of it mimics so many other conditions.

[EPguy]

In the reports I've seen, mutations can come, but don't go on their own. A known example is DNM3TA, which non commonly can emerge when taking IFN, I've posted on that.

Can you say which mutations have come and gone? Did they give you the allele burden % for them? If the burden was near their limit of detection that it could be the reason. Were they all done the same place and method?

That's good that adding B12 helped you feel better. I had ok B12 but you say that can be inaccurate at least with MF. I have ET/PV.