Questions on low ferritin and iron infusions

I would bypass my PCP altogether and go straight to a hematologist who has knowledge of malabsorption.   When my ferritin gets that low, I'm crawling through the day in a complete brain fog.    Fortunately, I have a hemo doc who doesn't even question my numbers, she knows by the way I look when I walk in her door that it's infusion time.    My other numbers, pre-infusion are usually just below normal or low normal.    She looks especially at my iron saturation numbers, my iron and my ferritin.   My hemoglobin is usually just shy of normal range.    

Thank you Julie. I was hoping to hear from you. I knew you had problems with yours in the past. I read one of your older posts about it. I've heard of 1 other person having low ferritin only and needing an infusion. She said at first she was given a blood transfusion in the hospital and then later when she saw a hemotologists they told her she didn't need the blood transfusion just iron infusions.

I had my first iron infusion last Thursday. My ferritin was 22.

The hemo is in the same office space as my PCP, so it's not that big of a deal.   I don't want to lose her, because she listens and learns from me about the DS.  She has even brought in her medical students for me to talk to about my surgery.

My iron is trending down, but it is still above normal limits from the infusions last year.

 

I had a series of iron infusions 3 years ago and they held on all this time.  My ferritin then was between 7-15.  Ferritin now is 30 and I am being referred for iron infusions again.  Maybe my threshold is a 3 year period:)  I had no problem with infusions then-hoping not to this time too. They sure made me feel better for a long time.

Thank you. I can't seem to find a doctor to give me the infusions. I'm sure its low again. I brought it up to 27, I think, but I ran out of my iron again and haven't been able to get it in a while. I feel like its low. Were your other iron labs low as well?

I went o give blood on June 5 and was turned away because of low hemoglobin of 10.  I had blood test from PCP on June 10 which showed a ferritin level of 6.  I can't take oral iron because of stomach issues (chronic constipation & nausea). I have been referred to get an iron infusion.  I have a consult appointment tomorrow at 1 but was told I may or may not get an infusion.  It will depend on my blood count.  Will they do another blood test tomorrow?  I feel progressively worse than when the last blood was taken...no energy, heart palipatations, headache, arms and legs very heavy, very dizzy .  I have been working but as soon as I get home I go straight to bed and sleep for a couple hours and once I wake I feel better but within a few hours I am back to absolutely no energy. I have read about all the things that low ferritin levels affect and I am a little concerned.  I have got to get some help to feel better....so hope they can help me tomorrow.

BubbaDoug, I hope you were able to get the infusion and you are feeling better.  

At 7 yrs out, oral iron isn't helping to bring my iron levels up.  In May, my Ferritin was 12, 2 weeks later it was 9, 2 weeks after that it was 7, this was after taking ProferrinES every day.  I'm scheduled for my first infusion since my DS on Sunday.  I can't wait.  I've been dragging my butt for months.

Ronnie, how did you did after your infusion last year?

Hi Chris. I actually still haven't had an infusion.  I would have to look back at my labs from a yr ago to tell you what it was. I think it was probably pretty close to what it was when I posted the 1st time. It is about time to have my labs again so I'll see if there has been a change.  Sorry I couldn't help.  I am surprised at how quickly your levels dropped!  I didn't think that was possible.  I hope you feel better after your infusion.  Please let me know how it goes for you.