ET and taking iron supplements

Hi all

Not posted or really been on site for a while as my partner has been quite ill and he has had to have surgery. He is on mend thankfully. I hope everyone is doing well. I have a question I hope someone can help with. I have have ET.

My GP has just advised me I need to take iron supplements as my levels are low and he is sending prescription to chemist for me to pick up. I know that taking iron with PV is an issue but is there any issue taking iron when you have ET?

I am on hydroxy only 500mg twice a week and baby aspirin and my platelets are very well controlled and within normal range now. Hoping someone can advise. Thanks Lizx

[Mazcd Partner MPNVoice]

hi Liz, glad to hear that your husband is on the mend. I am waiting for an answer for you from the medical team, will let you know what they say as soon as I hear. Best wishes, Maz

[Hidden in reply to Mazcd]

Thank you Maz, really appreciate that. I hope you are well xx

[Mazcd Partner MPNVoice in reply to Hidden]

Hi Liz, yes thank you I am very well. Prof Harrison had advised: Should be ok but suggest return to check fbc after a few weeks. Also might want to check with her local team. Hope this helps, best wishes, Maz

[Hidden in reply to Mazcd]

Thanks for getting back Maz. Thanks to a prof Harrison too. I will make sure I take Prof's advice. Glad all good with you. Take care Lizx

[AndyT]

Hi Liz - I was put on a short term iron supplement a few years ago, after my ET had been diagnosed and it didn't cause me any issues. Since then my level has been ok so it hasn't arisen again.

I'm guessing the difference with PV is that iron can be an issue with a high red cell count but I don't think it's a problem with high platelets in ET. Good to check it out with the MPN Voice medical team as Maz is doing and maybe your own haematologist too, who knows your full history?

Good luck.

Andy

[Hidden in reply to AndyT]

Thanks for replying Andy it's helpful to know others with ET have taken iron supplements with no issues. I've not had any problems with iron levels being low since I was diagnosed in 2012. Though did many years ago. Thought it just best to check though and not seeing my haem until Oct. Hope you are doing well x

[Ebot]

Hi Liz. I was put on iron supplements when I had ET and was found to be anaemic. But only on a very low dose (200mg a day). You probably also want to check what kind of iron you are being prescribed. I ended up paying for them as GP only able to prescribe ferrous fumerate and Consultant had prescribed ferrous sulphate which apart from anything else is more pleasant to take. When i was then diagnosed with PV i was put back on iron supplements when my iron levels became very low. Again low dosage and certainly not the level of dosage you would expect in order to resolve the iron issue in a non MPN patient. It's a very fine balancing act. As far as I understand it, more with PV than ET because of the impact on haematocrit levels. All the best.

[Hidden in reply to Ebot]

Thanks so much for taking time to respond to my question. Very helpful indeed. Best wishes x

[Deece]

Hi Liz

I have ET. I have been prescribed iron a few times and have had an iron infusion on the request of my haemetologist.

take care Denise

[Hidden in reply to Deece]

Thanks Denise, that's very reassuring. Hope all good with you. You take care tooxx

[Craftyviolet]

Hi, I have ET and have been prescribed ïron several times. I am on aspirin and hydroxy 500g daily. Iron levels are checked every appointment.

[Hidden in reply to Craftyviolet]

Thanks CraftyViolet, it's good to know others have taken it withough problems. Have a good weekend x

[Coradelphine]

I have had ET for 13 years now and it took ages to settle my platelets I am now on agrelide and stable. My HB level is never higher than 8 or lower than 7.4 my GP put me on iron tablets which I never even started. When I asked ny haematologist about them he said - forget them, they take at least a couple of months to make any difference and your low red cell count is part of the nature of ET. My ferrous (iron) levels are perfect which proves the point that iron tablets wouldn't make any difference in my case.

Good luck to all of you ,

Sue xx

[Hidden in reply to Coradelphine]

Thanks do much for posting a reply Sue it is appreciated. Liz x