I was diagnosed with Polycythaemia Vera back in March and it’s been a bit of a roller-coaster since. I am now fairly stable and my levels are all good apart from my iron levels.
When I first had my diagnosis my iron level was at 18, but after a series of venesections my natural reserves have been depleted and my level has dropped dramatically to 3! I’ve been told iron levels should be around 10 at the minimum but the Dr is reticent to put me on iron tablets quite yet as it helps promote red blood cell growth which is what I have too much of anyway and will undo all their hard work. At the moment they are monitoring and will review again at the end of the month which will be 3 months since my last venesection.
I just wondered if anyone else had experienced similar and how you went about combatting this? I am vegan so naturally eat a lot of iron rich foods anyway which was probably why I had a good level prior to venesections, but am obviously conscious that I don’t want to overdo it and be too iron rich. I think it’s all about finding the right balance between good iron levels and keeping red blood cells at a reasonable level!
Any advice would be much appreciated as it’s all still pretty new to me and I’m still learning.
Hi @CarolineL thanks for posting, we do hope you’re doing okay. Totally understandable you have questions around this. Like you say, it is a fine balance between managing red cell production and iron deficiency. Most individuals with Polycythaemia vera (PV) are iron deficient so this may take some time to settle whilst the initial management of your Polycythaemia vera (PV) is achieved, it is only month 4 so still relatively early days. Good to hear you have another review at the end of the month so they can check your iron levels again, but don’t be afraid to get in touch with them before this review if you have any worries or if your depleted iron levels are leading to symptoms.
It sounds like you’re doing a good job managing your diet, but if you ever needed any more advice or support with this you could also ask your team if they could refer you to dietician.
I too have Polycythaemia vera (PV) but was heavily anaemic before diagnosis. Least to say I think that was what was keeping my diagnosis go unnoticed for so long. Since diagnosis I have had to battle constantly with my iron levels and hct as they are totally counter productive but I feel my symptoms of low iron are worse than my symptoms of Polycythaemia vera (PV). That being said hct levels take priority. When my itching gets too much I push and at my Haemotologists hesitance get a Ferinject as tablets don’t work to which I feel a million bucks! But then that’s shortly followed by a venesection and so we start back at 1 again.
There really isn’t much you can do bar exercise and keep yourself hydrated as much as possible. My iron levels haven’t been over 8 for years usually 4. I instantly know I’m low when the itching returns and I start craving fennel seeds of all things!
Hello Caroline, I was diagnosed with Polycythaemia Vera in May 2020 after suffering a mild stroke. I had venesections weekly to bring down red cell levels the first month. Since then I have short spells on Hydroxycarbamide, and a month on iron tabs. I have recently started on Interferon injections, I feel well and levels are stable. I am 77 and feel well. Rest up when you need to!!
A great big welcome @Poppyacorn25 and you have already shown one of the great values of our forum by sharing your experiences.
I should think that it must have been very isolating and scary being diagnosed in Covid lockdown times.
I am glad that you are feeling well and that your levels are stable.
I look forward to hearing more about you.
Look after yourself
Ah you’re vegan too, @CarolineL! Developing an iron deficiency is also one of my concerns as a vegan having phlebotomy due to Polycythaemia vera (PV), although I take a multivitamin that includes some iron and like you eat loads of iron-rich foods anyway. I love spinach, nuts, beans etc and eat it them a lot. My haematologist confusingly told me that taking my multivitamin with iron was fine but also not to take an iron supplement, so I’m just sticking with the multivitamin I was already taking.
Glad to see from @Poppyacorn25 that we can be prescribed iron if needed though, thank you for sharing that and I’m glad you feel well. I’ll make sure to ask for that if my iron levels decrease a lot.
Hi just wanted to know if you have any side effects from interferon as.my consultant is talking about me having them…i have myelofibrosis and currently dont feel too bad and my bloods are stable
I’ve been taking interferon 45mg for 2 years. Only side effects are slight chills the night of taking and very mild flu like symptoms few days after injecting but this disappears in time!
No major fatigue or hair loss!
But everyone is different.
My levels are really well controlled relatively quickly too
Hello Suzyq,
I was diagnosed with Polycythaemia vera (PV) in 2020. I have been on various treatments and was put onto Interferon in June this year. Although I was a bit anxious about giving myself the injections I now find it quite easy. I have not had any side effects from it. I was helped by a nurse at my local GP’s surgery to talk me through it the first couple of times!! I think there is a very helpful video on Myeloproliferative neoplasms (MPN) Voice website by Alisha where she shows you exactly how to give it. Hope this helps. Good luck and stay well
Kind regards
Dorothy