hello I had an in iron IV 4 weeks ago as my ferritin was 27 (low end). Had a blood test yesterday Seems like it’s too high right now though! Is this normal after 4 weeks? When does it start coming back down?
scared of iron overload!
Ferritin (18-464 ng/nl) mine is 730 (high)
Iron range ( 9-32 umol/l ) mine is 39 (high)
Transferrin ( 2.1 - 3.8 g/l) mine is 2.1 (normal)
Transferrin Saturation ( no range) but normally up to 50% mine is 74% (high).
thanks!
nope, no worries very common. It happens to me also and it is not really a reflection of your iron level. It will come down, but it really ok. I have not had an infusion in two months, and I am still at 408. But my Transferrin Sat level is low, 19 and my iron is at 62, so I being scheduled for another round.
oh ok that makes me feel better! Thanks! got quite ill after it and I thought I am now suffering from iron overload. But my team did say this is not iron overload as I only had one infusion and the stores will be quite high for some time and settle over the months but I just was reading online and panicked about iron overload and organs being damaged
Welcome to Google paranoia. Whether a transplant or dialysis know the facts about your health is important and gives you a sense a power when you feel powerless. When I was on pd I had iron infusions on a regular basis. Doesn't seem to be a problem after transplant for now. When I was on pd I rarely used Google for answers because I saw a pd nurse often and pd was less complicated to handle mentally than a transplant. But with a transplant there were more medications and more tests and always a fear would the kidney survive and for how long. It became a numbers game after each blood draw and the Google paranoia set in. Not that it was not important to know the facts but the facts only increased need to have control. A control you never though about before kidney disease. Added to this medications that sometimes cause more problems that build small barriers to that sense of control. That is why this forum is so important. It Grounds you. With that said once you get your answer realize you will have more questions and that is ok. And googling is ok. It helps you form those questions for your team. But always realize your worst fears rarely come to pass.
Thanks! I’m trying to keep away from google at the moment! I hope that much iron 4 weeks after infusion is normal! I am not on dialysis yet or kidney transplant but do have kidney disease due to genetic kidney tumors I develop.
I love this answer, Eyak. So very true. You have to be judicious with searching out information. I am a Google Queen, but I also have a healthcare background so I search in peer reviewed medical journals or other more sanctioned sites. But it is still frightening to find some of the information out and think, "OMG, is this what I have?" Unfortunately, there are a lot of snake oil vendors out there. Good point about it is a great place to formulate questions for your health team. Well Said.
Understandable. Take care.
As Bassetmommer said, it is common. I’m getting iron infusions right now and my ferritin is 968. My ferritin has been high since getting iron infusions for the past 2 years. It hasn’t been below 600 in the past 1.5 years. I was concerned about it too and my nephrologist said it was nothing to worry about.
Wow fair enough. I thought iron infusions at that level could be dangerous for iron overload on our organs or even cancer etc. but glad to hear your specialist are not concerned over this at those ferritin levels.
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