B12

[Ellipops]

Does anyone have any information on B12 levels with PV please?

[hunter5582]

B12 deficiency can have significant impact on your health, including neurological function. Vit B is essential to making healthy red blood cells. It is not OK to be Vit B/Folate deficient event though you have PV and want you body to make fewer RBCs. The consequences of this deficiency are potentially quite serious. It is best to base your decisions on evidence of the presence of a deficiency. measuring your Vit B/folate levels is a simple blood test. This allows you to titrate sour dose to the appropriate level for you.

Note - I do take a Vit B/Folate supplement because I was found to be very Vit B/Folate deficient. I was also found to be Vit D and magnesium deficient. I take supplements under the guidance of a Integrative/Functional Medicine doctor. It is important to consider how these supplements can impact your body and the course of your PV.

Hope that helps.

[Ellipops in reply to hunter5582]

Hi Hunter. Thank you for your reply. Over the last 3-4 weeks I have been feeling increasingly lightheaded, anxious and having pins and needles in my limbs. Also in the same period my hematacrite level has gone up to 55%. Have just started venesections (2 a week for 3 weeks) in order to bring this down quickly. Seeing a new consultant at Oncopole in Toulouse (major cancer/research hospital) mid July as current doctor seemed to think my heamatacrite level was fine! My thinking is that if I’ve suddenly been making all these extra red blood cells over the last few weeks could I therefore be B12 deficient and that account for new symptoms. Think I’m just trying to think of anything that could be making me feel so disoriented. Will contact my local doctor and ask them to add B12 and folate to my regular blood tests. Best wishes.

[hunter5582 in reply to Ellipops]

Everything you are reporting is consistent with the symptoms of PV. Some of it sounds like the microvascular issues that are definitely PV related. The good news is that there are definitely treatment interventions that will help with what you are describing.

If you are already taking aspirin 81mg 1x/day, then you may need 2x/day - which is the current recommendation from some of the MPN experts. you need to find the correct dose for you based on your MPN profile. We are all different in how we respond. Note that for me this is 40.5 mg/day. this stopped the pain in my toes/feet without causing excessive bleeding.

You are wise to find a new hematologist. HCT at 55% is NOT okay, Target for a female with PV is 43%. At 55% you should expect to be symptomatic and at risk for both thrombosis and microvascular events.

Depending on your age and risk category, you may be a candidate for cytoreductive therapy. PEGylated interferon and hydroxyurea are usually the first two options considered. If you are less than 60 years old, then PEG-IFN is generally preferred due to the risks associated with long-term HU use, Some docs prefer PEG-IFN for all patients based on the current research indicating its potential to be disease altering. Not all docs agree on this at this point.

Do definitely see a MPN Specialist at this point. Most hematologists have little experience with MPNs because they are so rare. Here is a list of MPN expert docs. mpnforum.com/list-hem./ .

All the best to you,