Anybody have low iron?

I had a bad bleed about a month ago due to low counts and a really bad period my hemoglobin dropped from 12 to 7.2 over night luckily they gave my trusty megesterol so stop the bleeding and it came up relatively fast to 11.4 efore that my hemoglobin was normal but my Ferratin was 15 and iron saturation was 6% so I got another test the other day and my ferratin was 7 and iron sat was 4, I had my first iron iv Tuesday, a series of 6, I have felt horrible ever since headaches and I feel ten times more tired I know this is the itp site but thought maybe somebody could tell me something positive about infusions? Oh and I was on the iron pill but apparently wasn't absorbing them

Kelirae24 wrote: I had a bad bleed about a month ago due to low counts and a really bad period my hemoglobin dropped from 12 to 7.2 over night luckily they gave my trusty megesterol so stop the bleeding and it came up relatively fast to 11.4 efore that my hemoglobin was normal but my Ferratin was 15 and iron saturation was 6% so I got another test the other day and my ferratin was 7 and iron sat was 4, I had my first iron iv Tuesday, a series of 6, I have felt horrible ever since headaches and I feel ten times more tired I know this is the itp site but thought maybe somebody could tell me something positive about infusions? Oh and I was on the iron pill but apparently wasn't absorbing them

Hi Kelirae,
I love your new profile pic with both of the boys, btw, so cute!
I did the 10 infusions of IV iron (ferrlecit in my case) a little over a year ago (lots of ITP related runaway periods built up over time). I remember feeling even more tired than usual when getting the infusions (the process of even absorbing the iron takes a lot out of you, so no instant relief for me!). After a while though, I definitely got a gradual increase in energy and was feeling better. I feel like the effects of the infusions lasted me pretty much until now.

After doing the infusions, I tried to maintain things by doing 2 vitron C pills a day. My HGB was usually in the 12s for a good long run (that's crazy good for me). In the last few months, I ran out of iron pills and got a bit lazy about getting more and just got sloppy in general. My promacta seems to also cause my iron to go down, even without horrible monthly bleeds, which is why my hematologist had recommended the infusions in the first place. Fast forward to my last two or so labs where my HGB was back in the low 10s (and probably dropping). I got my act together and returned to my 2 pills of vitron C a day to see if I can turn the tide back in the other direction. My most recent labs were slightly up in the HGB, so I'm going to keep an eye on it, and see if I can keep up with the oral iron to stave off any further decline. It's not fun (I get a bit of GI weirdyness, but nothing too bad), but a lot easier (and cheaper!) than doing infusions periodically. The promacta definitely helps with my monthly blood loss too, so I should be able to manage with only oral iron.

Hang in there with the infusions. I remember dragging after I got them, but then was so glad I did after my body had time to process it all. Don't give up on oral iron either. When you get too low, it's hard to dig yourself out of the hole with just oral iron (it's like shoveling while it's still snowing outside), but once you get your infusions, oral iron can help to keep you from dropping back down so low. Try taking 1 vitron C (that one seems to do well for me with the least severe GI side effects) in the morning before eating. Lots of things interfere with absorption, so I like to have a buffer zone when I don't eat around taking that pill. Ideally I wait 2 hours after taking it, but sometimes closer to one. Just something to try. Keep us updated!

Thank you for the response so glad I'm not the only one at the drs right now gonna get my second dose and dreading it lol I'm not a napper I have never napped but since I got the Iron Last week I've napped every single day I can barely keep my eyes open hoping it gets better soon!

mom, you said " (I get a bit of GI weirdyness, but nothing too bad), " I also get that feeling 6" to the left of my navel on Nplate. I describe it as a gut discomfort that is on the outside of my intestine not inside moving with food. Like the fluid around the intestine is irritating me. Sometimes it's a 3 on the pain scale but mostly not noticed or a 1. The first hard copy test I have at home to read taken 3 weeks after diagnosis had my WBC at 5.2, RBC at 3.03, Hemoglobin at 10.4, and Hematocrit at 29.8. At the time I was on a multivitamin with 400 iron that I was told my body was storing and not using. I stopped all iron intake and after 4 months all my numbers except platelets have returned to normal. It seems that low platelet count affects dang near all your other counts. I am a happy 114 today on 1mcl/KG Nplate although if I sneeze after my injection it tastes like spray paint..lol.

thomaskm wrote: mom, you said " (I get a bit of GI weirdyness, but nothing too bad), " I also get that feeling 6" to the left of my navel on Nplate. I describe it as a gut discomfort that is on the outside of my intestine not inside moving with food. Like the fluid around the intestine is irritating me. Sometimes it's a 3 on the pain scale but mostly not noticed or a 1. The first hard copy test I have at home to read taken 3 weeks after diagnosis had my WBC at 5.2, RBC at 3.03, Hemoglobin at 10.4, and Hematocrit at 29.8. At the time I was on a multivitamin with 400 iron that I was told my body was storing and not using. I stopped all iron intake and after 4 months all my numbers except platelets have returned to normal. It seems that low platelet count affects dang near all your other counts. I am a happy 114 today on 1mcl/KG Nplate although if I sneeze after my injection it tastes like spray paint..lol.

That is strange Thomas. I guess I should have been more specific than GI weirdyness :lol: I was actually referring to constipation/loose stool alternation that I get when on iron. For some people iron supplementation is very constipating, for others it causes diarrhea. For me, it is neither one or the other, but can cause alternation between the two states. Nothing horrible, and certainly no strange pains or major complaints. Some people can't take oral iron supplements because of intestinal distress, and I'm fortunate (since I'm always anemic) that that is not the case for me.

I don't know about platelets/ITP affecting other counts though. Bleeding sure does affect Hemoglobin and Hematocrit of course, because lots of bleeding can lead to anemia! Your count is great though, so whatever issues you were having with the multivitamin, it sounds like they have resolved. Good news!

Kelirae24 wrote: Thank you for the response so glad I'm not the only one at the drs right now gonna get my second dose and dreading it lol I'm not a napper I have never napped but since I got the Iron Last week I've napped every single day I can barely keep my eyes open hoping it gets better soon!

With two little ones running around, that has to be tough. My boys are older now, so when I was tired last year after my infusions, they were able to entertain themselves :lol:

Hopefully you will like the end result of these infusions (energy!) as much as I did. Good luck!

So far much better then last week I feel like I've been lifted out of a fog I felt I was in the last few months. Actually feel a lot better lol and yes they are a handful sometimes I wish they sold tranquilizer darts for kids totally kidding lol their amazing just wish they'd nap at the same time so I could lol