Raised iron levels.

[Purplelady2]

My husband has E.T.and has been on hydroxyurea for 6 weeks. So far he hasn't had any ill effects. His platelets have come down but he still has raised red blood levels and a recent blood test showed high iron levels. Has anyone else had this happen. He may have to have a venesection.

[Shanders]

Hello. This happened to me last year.

I am on Hydroxycarbamide and get my bloods taken every 8 weeks. Between December 23 to March 24 my results started showing an increase in iron levels. As a result I underwent tests for Haemochromatosis (which is apparently common amongst people from West of Scotland and Ireland - I am from the West of Scotland). I came back negative on the test as fully having it but I did have a genetic marker.

My consultant couldn't be 100% sure that there was a link between my ET and the high iron or the genetic marker for Haemochromatosis so decided to just monitor me for a while before deciding if venesections were going to be needed. My iron levels have now normalised (albeit at the high end of the normal range) so its something that is just being monitored along with everything else now.

As an aside, since starting on Hyrdroxy, I quite often have a couple of months of anomalies in one thing or another that eventually regulates to normal again. So far it has been white blood cell levels, folate levels and iron levels that have either spiked or dropped and then gone back to normal again.

Not sure if this reply is actually helpful other than to share that since I was diagnosed and went on Hydroxy I have rarely had a 'normal' set of blood results so it's maybe worth raising with the consultants about further monitoring before moving straight to venesection (if that is something he would like to avoid)?

[hunter5582]

This is an issue that needs more careful analysis. Erythrocytosis is the hallmark of Polycythemia Vera rather than ET. Since PV can also include thrombocytosis, sometimes PV is misdiagnosed as ET. It is more common, however, for PV to be accompanied by low iron levels. Suggest that consulting with a MPN Specialist regarding this situation to get the best answer.

[Wyebird]

hi, I have very high ferritin levels but low haemoglobin. The blood is so complex. There are quite a few iron readings. I can’t even have iron tablets despite anaemia. so it really depends on what you mean by iron.

[summerdown]

Hi there. I am ET and Jak2 and have been taking HU since 2019. It is early days for your husband. Iron levels do go up and down a bit and they will monitor this. keep an eye on diet - red meat and eggs may raise iron. make sure he keeps hydrated and exercise/walk helps. I know my platelets seem to go up if I put on a few pounds but that might just be me. hope he can tolerate HU. This is the only medication I have tried so far. best wishes

[Luvlyhubby]

My 74 yr old husband diagnosed with PVJak2 Sept 2023. Was given 4 vinesections (just like giving blood) but Hemacratic stayed high so started on Hydroxyurea. He sees his Haematologist every 3mths (was every month), bloods etc all good & Hemacratic staying below recommended 45. He has had no side effects (just hair thinning a little), always keep my fingers crossed 🤞. Please give it a little more time as we were told the dosage may need adjusting (it did take a few months), now on 500mg daily which he takes before going to bed.