Ferritin levels for repeat iron infusions

[sophie]

Hi,

Last September I was feeling exhausted to the point of passing out when I stood up. My bloods came back normal (including RBC etc) all except my ferritin level which was 10 (range 10-291). My consultant suggested that I needed an iron infusion as I cannot tolerate oral supplements. Whilst waiting for my appointment (4 weeks!) my levels dropped to 8 and I felt like I was on deaths door.

8 weeks (December) after my infusion my ferritin was up to 139ng/ml and I was feeling better than I had done in years (its amazing how we settle for feeling so fatigued!). My levels were tested again in March and my levels had fallen to 40.2 and my most recent test (June) shows my ferritin is now 33. I am starting to feel very fatigued again and my hair is starting to shed more.

My question is at what level do people have infusions to maintain their ferritin levels, I obviously don't want to let it drop much further as the exhaustion was awful.

Thanks in advance

 

[Malice67]

I asked my hematologist the same question on Monday... he has me on an every 2 month lab testing schedule to try to catch the anemia before it gets as dangerous as it got last time. Instead of monitoring the ferritin, he is testing the H & H values as he can get those results within five minutes, and if too low, can start the infusion on the spot. He didn't say what specific level would make him infuse me again, but last time they repeated the infusions weekly until they got my hemo up to 9, gave me a month off, then another 4 infusions to get me to 11, a month off, and then I was at 12.9 and no need for more. (for my ferritin over the same period went from less than one to 22, but not sure of any of the interim values. My hematologist is ok with ferritin over 15, prefers it at 30 or more. You are hitting his preferred level but steadily dropping... pretty sure if you were me he would infuse again... as mine is lower than yours but rising.. the trend is important )

But what he did tell me this last visit was that I should pick an activity that I can currently do without too much exertion -- for example, an uphill walk at a reasonable pace while carrying on a conversation -- and when I start to notice difficulty, come in immediately to check my numbers. He said that thee are so many lifestyle reasons (ie, non medical reasons) to feel tired that I needed a better benchmark.

Also, you say your other numbers are good... did they check B-12 and folate? In the US those aren't included in the "complete" blood count.. but play major role in formation of healthy red blood cells.

good luck!