Iron levels

[nannybarb08]

Hi I have polystyrene vera and jak 2 faulty gene,went to Dr about blood results,which I have every 2 months, I have blood letting when needed,and take aspirin every day,the Dr told me I was iron deficient and gave me iron tablets,I'm unsure whether to take them as I've read it makes the condition worse,can anybody tell me if they have had to take iron tablets,I don't think the Dr knows a lot about polycythermia thanks for reading this

[piggie50]

Hi, I love the polystyrene vera 😂.

I’ve had PV for just over twelve years now, I would query the iron tablets, and the reason for prescribing them, my consultant has always said to me, ‘we deliberately keep you iron deficient’.

I did have them once when I had a major stomach bleed but only for a short time.

[Mazcd Partner MPNVoice]

Hi Nannybarb, if it was your GP who prescribed the iron tablets it might be best to see him/her again and query if your haematologist has said it is ok for you to be taking iron tablets. Maz

[nannybarb08 in reply to Mazcd]

Tt

[nannybarb08 in reply to nannybarb08]

Th

[Aime]

Agree with Maz, please check with GP that the tablets have been approved by your haematologist. I was put onto iron tabs once but only for 2 weeks. My gp sought haems advice. Kindest regards Aime xx

[Cja1956]

I agree with the others. When I became anemic a few months ago, my hematologist told me he didn’t recommend iron supplements.

[AndW65 in reply to Cja1956]

Hi nannybarb08, I saw my doctor today to discuss yesterday's blood results. After a recent venesection 3 weeks ago my levels are pretty good with the exception of my iron levels which are very low. My ferritin level has dropped to 8 (should be between 20-300), this explains why I've been so tired and weak lately. I asked if there was a way I could raise my iron level by taking supplements, but he told me that it would increase blood production which would mean even more venesections. He told me that I will have to take suppressants such as Hydroxyurea . This will allow my iron level to slowly rise whilst suppressing the production of blood cells.He basically told me that other than obtaining iron naturally from your food you shouldn't take iron tablets as this will have an effect on on blood production.

[nannybarb08 in reply to AndW65]

That's for that, I'm seeing my hem doc in may, think i will wait until I see him and ask him what he thinks,

[MCW22]

Ah predictive text can be so funny, but of course we knew what you meant. Gave me a good laugh though.

[Marossi]

My haematologist did give me an iron infusion followed up by tablets when frequent venesections left me anaemic ( like you I had ferritin at 8). He was also concerned that the anaemia was making my platelets rise. It’s true that the extra iron made my red blood cell production spike but I was carefully monitored and this was kept under control by increased dosages of Pegasys and supplemental venesections for a few months until all blood counts came under control and I was able to stop the venesections and reduce Pegasys. I was glad to have been prescribed the iron as it made a huge difference to my overall well-being. Being so anaemic made me feel dreadful : exhausted, weak, weepy. Within a couple of weeks of taking iron supplements I felt much better. However, I do echo others on the forum that you need to check your doctor is aware of the effect of iron supplements on PV.

[nannybarb08 in reply to Marossi]

Tt

[nannybarb08]

Thanks for info checked with an other and she said a short boost of iron will make me feel better,checking in with my Hem in May

[Hearingu]

Hi, I have had Pv for five years . Have excellent Heamatologist who recently prescribed iron and I felt thee same as you But taking one every other day as well as daily aspirin and feel much better for it . In fact feel great ! Go for it ! Can always stop if no difference 🤗Good luck !

[nannybarb08 in reply to Hearingu]

Thanks very much for that, feel very positive for your comment, I think I will start to take them as I feel very low in energy and have to push myself to do every day things, hope I feel better as you have, thanks, regards Barbara .

[Hearingu in reply to Hearingu]

You are very welcome. All the best!

[Johnsb]

I agree with the others here, higher iron levels typically mean higher Hgb values, which leads to increased venesections and meds. Check with a hematologist. My hema alerted me to this and said if my GP ever suggested an iron supplement to say no.

[Sheryljean]

Agree with all.

I had iron infusions due to anemia which triggered the PV. Immediately am off. Was told to eat fish..spinach etc to obtain the iron into system but not until my last recent visits have I been told I can take iron tablets or liquid iron. GNC makes an iron pill that is gentle to system that I take twice a week right now.

GPS are not aware of PV so a hematologist visit might be beneficial for you.

Good luck...

Sheryl