Hi All. They’re trying to get my haematocrit down to below 0.450 but they keep changing the amount of time between venesections even though it goes up. My haematocrit hasn’t been below the target for 6 months and the last result was 0.496. During my review this morning with the registrar, I asked why the venesections weren’t on a regular basis to get it to where it supposed to be. I was asked if I ate red meat as that would be affecting it. I understand that and was told by the last registrar that that was fine but not to take any supplements. I hate taking tablets so no issue with not taking supplements. I am now being told that red meat is off the menu. It appears to me that they don’t read previous notes before meeting up with patients.
Hi @Adw265 Have you queried the ‘mixed messages’ you feel you are getting from your different Registrars?
Perhaps be pleasantly assertive and ensure you get an answer.
All I would say is that perhaps even ‘experts’ can vary in their opinions sometimes.
Please do let us know how you get on
Hey there @Adw265, sounds like you’re having a frustrating time with varying haematocrit and iron levels and feedback from specialists.
I’ve got Polycythaemia vera (PV), another Myeloproliferative neoplasms (MPN) that’s very similar to your Essential thrombocythemia (ET). On top of taking daily hydroxyurea, I also need regular phlebotomy. Initially, after diagnosis, it was fortnightly but since my haematocrit is now mostly within the normal range and below my goal of 45 % I don’t always have to go in for the bloodletting. Had my CBC done this morning and am awaiting the results to see if I need to go in on Wednesday for phlebotomy or not, so I really empathise with your post.
While my treatment seems pretty similar to yours, there’s basically been no feedback on my iron levels. I was last tested for ferritin back in June! I even asked my haematologist the other day whether it was worth checking my iron levels again today and he pointed out that they “expect and want some deficiency as the goal is to reduce iron and control the disease”. Perhaps your venesections are at irregular intervals for similar reasons, following along behind your CBC results each time and staying in sync with your iron?
As a slight aside, I’m vegan and don’t get much iron in my diet anyway, but I stopped taking an iron supplement a few months ago and actually noticed my nasty fatigue reduced around that time, or I should say my energy increased. That might be coincidental but worth mentioning. May I ask what red meat you eat that is now off the menu? Advances in vegan food might mean you can keep eating foods that are similar to your favourites but without so much iron (and no cholesterol). My other half is a big meat eater but loves much of the vegan stuff I’ll have when I want something meaty, like Beyond burgers and so on.
Hi @Erica it was questioned and the answers given didn’t satisfy myself or the CNS that was in attendance. The CNS spoke directly to the consultant who confirmed that dietary iron was not an issue. Next venesection has also been cancelled due to ferritin being at 7. The consultant is going to take the next review assessment and a decision on what happens next will be made then.
Hi @Duncan thanks for your reply. I have Polycythaemia vera (PV) and Essential thrombocythemia (ET). I don’t eat a lot of red meat as I prefer fish and chicken. But it nice to have beef or lamb occasionally. The dietary iron issue has now been sorted by the consultant. Thanks for the advice.