My recent appointment with MPN specialist and B12 deficiency

[PrinceA]

Hello everyone

Just wanted to give you status after my first appointment with MPN specialist

Most of the things been told, I already learned about through research and (thanks to this group), below are the couple of things that I didnt know

1. ET only can be diagnosed with bone marrow biopsy

2. PV is the only MPN that can be diagnosed by blood test (if meeting the criteria), not necessarily need bmb.

3. Most of MPN patients have elevated B12 levels

As far as for my case, I have only the Jack2 mutation positive right now, no other criteria since my numbers still considered normal.

She advised, she doesnt see an urgency to get bmb for my case, unless I want one to get the diagnosis, and that will not make any change since I dont need any medication right now.

She ordered erythropoietin test for me, she mentioned with PV this will be elevated.

Also recheck my B12, (I have B12 deficiency and I'm on daily supplement)

Was taking iron, she asked me to stop that right now until we check my CBC, because if I have PV the iron may increase my RBC and hgb.

She asked me to take aspirin daily (even I can take only 4 times a week)

Do you guys have elevated B12 levels ? please let me know what you think and if you have any advise for me.

- thank you, Sosi

[Tess74]

*She ordered erythropoietin test for me, she mentioned with PV this will be elevated*

I thought erythropoietin was elevated in 'secondary' PV but was normally low or within normal range with Primary PV?

[PrinceA in reply to Tess74]

Hi Tess, yes you are right, will be low, I figured I posted that wrong,..

[Lettie_WP]

I can't answer your questions, but I have (suspected) PV and Pernicious Anaemia. I have 8 weekly B12 jabs for the latter (I can't get sufficient B12 from food). There is also no accurate way to test for B12 levels once you start the jabs (it will likely come back high). Interested to know how others with both PV and PA have faired. (Life before my B12 jabs was pretty miserable - they have turned my life around).

[PrinceA in reply to Lettie_WP]

Hi Lettie, how much was your B12 levels ? mine was 200, also do you have any mutation ? both nurse practitioner and the MPN specialist, told me usually MPN patients would have elevated B12

[Lettie_WP in reply to PrinceA]

Gosh , it was over a decade ago that I was diagnosed with Pernicious Anaemia (PA) and I honestly can't remember the numbers. All I know is that it was low (outside normal range) . People with PA can't access enough B12 from food as the gut simply cannot absorb it. Before B12 injections came along it was a very grim diagnosis (pernicious = fatal). Having a further diagnosis of another condition (e.g. PV) would not change this. However, PA is not the only cause of B12 deficiency, it can for instance be dietary (vegans and vegetarians are at risk and many take B12 supplements). So, if it were me I'd be wanting to know if I had PA or if I was deficient in B12 for some other reason. So far I have only been checked for JAK2 and it came back negative.

I do hope you get to the bottom of your B12 deficiency - the effects can be so horrible. I went undiagnosed for years - vision disturbances, fuzzy head / dizziness, and very limited energy / lethargy. But once the B12 was addressed things improved hugely.

Good luck.

Lettie

[PrinceA in reply to Lettie_WP]

Thanks so much for bringing this up to me. Had no idea there could be different causes for the B12 deficiency . I will definitely discuss with my hematologist on my next visit. Yes I have energy issues too, fuzzy head sometimes. also issues with my memory. good luck to you too.

[hunter5582]

I am so glad to hear you met with the MPN Specialist. As a clarification, there are two way to diagnose ET - Meeting all 4 Major criteria (including BMB results) or meeting 3 Major criteria and the one minor criteria (per the WHO). See WHO criteria.mpnconnect.com/pdf/who-diag...

I would not be in any big rush to get a BMB. If your platelets are below 450 and you are asymptomatic, there really is not need at this point. Sounds like really sound advice from the MPN Specialist - which is exactly why it is such a good idea to see one.

NOTE: There are people who are JAK2 positive with no evidence of a MPN. This is an area of research a they are trying to understand this better. The flip side is the people who present with a MPN with no driver-mutation evident.

Stopping the iron supplement sure makes good sense when you are trying to sort this out. Deregulation of iron metabolism is part of PV. Knowing what your erythrocyte levels look like when not on iron will help figure things out. Getting your EPO levels will also help sort this out. (Saw your correction below) low EPO + high RBC/HCT = consistent with PV. Stopping iron might also impact your platelet levels as iron deficiency can cause elevation in platelets. Another complexity the MPN Specialist can help sort out.

I also have a significant Vit B/Folate deficiency. Also Vit. D and magnesium deficiencies. Take supplements for all of those. You are quite correct in that Vit B/Folate deficiency can have very negative impact on the brain. Definitely something that needs to be addressed.

Please keep us filled in on what you are learning. We will all benefit from shared knowledge.

[PrinceA]

Thank you so much for the detailed comment, as usual alot of good information learning from you, I appreciate that.

Will see how it goes with my upcoming tests, it will be interesting to find what my EPO levels are, never tested for it originally ( I was surprised that my hematologist hasn't ordered for that test) also the rest of the counts.

I also have deficiency in Vitamin D and took supplements for 3 months, I may need more, it also depends on the test.

One more thing I forgot to mention, the specialist told me to be aware of warning signs and to never ignore any pain in the chest or back or swelling in the feet.