I had a telephone consultation with my haematologist today, who told me that my Haemaglobin levels were a bit low, therefore making me slightly anaemic. ..I forgot to ask him whether I should take an iron supplement, as I have been feeling very exhausted recently..but think I might have read somewhere that a supplement wouldn’t necessarily work. Can anyone help ?
( I am 58 , on HU & daily aspirin for Primary MF)
Hi, it’s such a difficult balancing act. I was put on a month’s iron as I was anaemic and feeling so fatigued but that tipped the scales too far and I had to get a venesection. I will get my blood tested again soon to check levels but I’m feeling okay just now.
Kindest regards Aime 😻
Thanks Aime, I eat a good well balanced diet, so probably shouldn’t take a supplement without consulting the hospital first….but anything to help the fatigue is tempting !
Yes, definitely don’t DIY iron supplements. I may have been okay if I had taken only 2 weeks of iron tablets, which I did once a few years ago. It will be interesting to see what my blood levels are now. Coping with the fatigue is tough because no matter what you do, it doesn’t help how you are feeling. Hope you find your balancing point soon. Kindest regards Aime 😻
hey
sorry to read about your fatigue, it can be horrible when you feel so awful.
on iron supplements, you are right they may not work. with MF low iron is commonly not the reason for hgb being low, low hgb and low iron while sometimes connected are two different things.
it is very possible you have a good iron (ferritin) count but still low hgb, and extra iron may create a different problem (too much iron)
I would ask your consultant what your ferritin levels are and take it from there.
Good luck, hope you are feeling better soon
paul
Thanks, think I will contact hospital again before doing anything, although he did say I have mild anaemia.
Hi there. Definitely don’t take any iron supplements without talking to your haem first. It can be a really tricky balancing act (believe me, been there, done it!). I had very low ferritin levels and low Hb and felt absolute rubbish. I was put on low dose iron supplements but carefully managed otherwise it gets swings and roundabouts. Everyone is different but the general advice is to steer clear of any kind of supplement without taking advice - and that is especially true for iron.
I’m always anaemic! Sometimes the haematologist puts me on iron tablets until the hg comes up again, over the counter supplements don’t work - no matter how much you pay for them! I eat a good diet lots of leafy greens, protein etc but that makes no difference, my hg gradually falls again. Obviously it’s how my body has decided to work with the ET and drugs. I’m expecting to go back on the iron tablets at my next review as the hg had gone down again last time.
Hi, in the past, when I was a young woman (68 now), I used a tonic called Floradix (the fluid version) and it really helped my low iron level. It's made up from plants. I'm not sure how that would work with your particular health situation, but wanted to share the information anyway. Wish you all the best.
My wife has MF and often has massive bleeds, which after four or five bags of red blood cells is still very anemic. Her hematologist then sends her for an infusion of iron. The benefits of this still take around a month to bring her hgb up to normal levels. ATM she is well and awaiting a showdown with the consultant in December over the dosing of hydroxycarbamide!!Ask about an iron infusion, they are expensive!
I am anaemic because my haemaglobin produces some deformed cells. I am not short of iron, so anaemia isn't always down to that. Too much iron in the blood can be harmful, so no-one should DIY iron supplements without advice from their GP.
Hi i was put on iron tablets because my ( stored)iron was low. Once that recovered I had to stop because ferritin was too high. Even though my hg was below 10. We are all different only your heamo can help you. I’d say if them ago with heamo’s approval. Good luck
I was the same and put on ferrous sulphate daily. After 3 months still no difference so continued at 2 tablets daily. It is now 6 months and waiting to hear from dr to see if improved but feel lot better in myself and not so tired
Be very careful with these. I have PV and started taking Iron supplements. My Haemaglobin levels went through the roof.Needed extra phlobotomies.
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