Folate/Folic Acid

[Otterfield]

I had my telephone consultation today (ET JAK2+ Pegasys) and was initially horrified to hear that my Haemoglobin was 77 and Platelets 46! However, it turns out that for some reason my folate level has dropped to an extremely low level, to the point where my consultant said I MUST collect a folic acid prescription today and start taking it immediately. It feels quite scary but does explain my recent increasing fatigue. He is confident that the prescription will restore normal levels in 4 to 8 weeks and also assured me that the low counts don't indicate progression to MF as my WBC count has been improving. It's all a bit strange and alarming though, has anyone else had this?

[socrates_8]

Hey Otterfield...

Yes, is all a tad disconcerting isn't it?

I think I would want to see a repeat of those results before really becoming too worried, and if they are the same, then maybe it might be worth undergoing some other testing, or gaining a 2nd qualification via another medical opinion (?)

On the other side of that coin, what level is your Pegasys. at and how long have you been taking it too...?

There are some people who have seen astounding drops in the vitals due to their Pegasys. dosage being fairly high, and perhaps requiring some further adjustment to be made...

Hence, before worrying too much that you might be progressing to MF, and contemplating having another BMB, (if you had a BMB?)

First, I would suspect that it might be the Pegasys...

Remember that a single Blood count alone is not a true indicator, and might better be viewed as part of an ongoing trend over time...

However, and that said, I do know of a few people whose vitals were really going quite low while on higher Pegasys. doses etc...

Hope that this might be useful information...

Stay safe & well...

Steve

[Otterfield in reply to socrates_8]

Hi Steve, thanks for your reply. I have wondered a few times if my Pegasys dose (90mg weekly) is higher than I need, but my consultant's main concern has been to get my WBC count down, which has happened so he is keen for me to stay on this dose for the moment at least. My Haemoglobin has been on the low side for years (around 100) and my Platelets between about 120 and and 150. I've been on Pegasys for a year. He did say he was confident that taking folic acid will sort it out and I feel I must try to conquer the natural anxiety that comes from this. My next blood test and appointment will be in eight weeks but I'm hoping I will be able to tell from how I feel when/if my Haemoglobin starts to rise again.

Thank you for your support,

Jennie

[socrates_8 in reply to Otterfield]

Pleasure Jennie...

Keep us informed as to how things unfold etc...

Best wishes

Steve

[revfee]

My folate levels suddenly dropped a couple of years ago, but came up again with folic acid and have stayed up since even though I've stopped the folic acid... one of the mysteries of life with MPN!

[Otterfield in reply to revfee]

Thank you for sharing your own experience. It's hard to know why my folate levels have plummeted so low but, as you say, it's an MPN mystery!

[Arty16]

Same thing happened to me they tried iron tablets first never again I had a bad reaction. So got folic acid brought levels back. I have continued to take it and also B12 vitamins.

[Otterfield in reply to Arty16]

Thank you. It's encouraging to hear that folic acid sorted it out for you.

[hunter5582]

My Vit B/Folate levels were found to be very deficient. Also moderate magnesium and Vit D deficiencies. Taking quality supplements as advised by my docs has addressed this issue. Something you might want to consider is a complete nutritional analysis to see how your body if processing nutrients. My Integrative Medicine doc used the NutrEval test package which also looked at toxin exposure. Was also positive for elevated mercury levels (eating too much tuna.)

Nutritional deficiencies can come for a variety of reasons. Addressing them is really important to our health. Hope you get it all sorted out ASAP.

[Otterfield in reply to hunter5582]

Thank you, that's all helpful information. I have wondered about other nutrients I may be missing for whatever reason so that's something to pursue.