Iron deficiancy

Had my review yesterday and my platelets down to 311 - having other problems as my tiredness is down to anemia - haematologist has stopped Hydroxy carbamide temporarily as need to deal with the anemia - have any of you had to have an iron infusion as I may need to have one.

Thanks

Carol

[Paul42]

Hi

Ive had Iron supplements for Anaemia. Usually a short spell on them resolves the issue quickly.

Paul

[Hidden in reply to Paul42]

Thanks Paul 42 - I can't take iron tablets as they upset my stomache have you had an

infusion in hospital ?

[Paul42 in reply to Hidden]

Hi

Only a blood transusion thats all.

I didnt even know they could do infusions for Iron.

Have you tried taking iron after a meal? That might help

Paul

[darcey]

Hi Cazinmelita

I had an iron infusion last year when I was anaemic , it is put up like a drip in the day unit and took about twenty minutes. They want you to rest after so was sitting for about 40 mins in all.

Had a wammo of a headache the next morning but other than that it was all very quick and I felt better after. When anaemic in the blood iron pills & foods do not help.

[Hidden in reply to darcey]

Thanks Darcey will wait to hear from haematologist - I have a problem with iron pills and can't take them so this seems to be my only solution. x

Caz

[Stanley28]

Hi - i have had the infusion several times - each time it took about 5 hours. they needed to start the infusion for a while and then stop it to see if you have a reaction and then start it again. it was fine - no pain or after effects for me - and after a few days i could feel the benefits.

[Hidden]

Thanks Stephany28

[harleydavidson]

Hi. what are your levels? Mel x

[Hidden]

Hi Harleydavidson I can only remember my platelet level had dropped to 311 and that my red blood cells were too small.

Caz

[Helpatlast]

I had iron infusions every day for six weeks when I first was being diagnosed and it is fine - does take some time to sit and go through intravenously and can be some hours - if you have a few infusions you do need to take it easy after and it can make you feel a tad "odd" but not actually ill but do rest and go careful - you will find it fine if you need to have it.

Other tip is a product called Spatone - you can find in chemist or Tescos etc - natural source of iron, very high concentration and does NOT effect the tum - one my consultants got me on to it a few years back when I had horrendous pre menopause flooding as well as MPN and I have never been able to take iron tablets they REALLY upset my tum and he recommended Spatone as it is so good and fine on tum - I was dubious as tablets made me so rough but it is brilliant and great on tum (you drink a small sachet it is water from iron rich rock in Wales!!) and soon had my count up.

Hope you get sorted soon

[Hidden in reply to Helpatlast]

Thanks will have a look for this product

Caz x

[harleydavidson]

Always remember not to take iron without your heams say so x

[Hidden in reply to harleydavidson]

Good point will check with him although he wanted to put me on iron tablets

[harleydavidson]

That should be ok then. Its different with PV, messes with your counts. Good luck. Let me know your heamaglobin and ferratin when you get chance to ask. I wtite down my counts or get them to give me a copy each time I have a blood test, it makes me feel that I have a little control! Mel x

[Hidden in reply to harleydavidson]

I keep a note of my counts but tend to wait until I get my letter from Haematologist to record - must remember to take my little book and ask next time. On the plus side 3 days of not taking Hydroxy Carbamide and I have some energy back and less fatigue. xx Caz

[harleydavidson]

Hi Caz. Glad you have a little more energy. My ferratin level stays between 6 and 13 so I live with fatigue, it's the worst part of this illness. I sleep like a log but still wake feeling as though i haven't been to bed. I wish you well. Mel x

[Hidden]

Had a bit of a shock this week- hence my absence. Having been taken off HydroxyCarbamide on the 1st June I had a couple of days where I had a bit more energy - it didn't last. Then had a phone call bringing forward my next appointment to Monday 8th. Went along with my very supportive husband as I had a few dizzy spells and was very light headed. The outcome in brief is that I don't need to have iron infusion as I produce enough but my red blood cells don't mature and move it around, my HG was very low at 59 and I am booked to go into day hospital tomorrow for a blood transfusion (3pints). I have an additional diagnosis of having Sideroblastic Anemia along with JAK2 Possitive ET. Anyone else have this problem?

Thanks

Carol