Low hemoglobin but iron levels fine - iron pills not helping

[cassimw]

Hi everyone - happy to say I haven't been to this forum for a while, but I'm back in search of your collective knowledge!

So my daughter has been "slightly anemic" for quite some time. They say her hemoglobin is low, but her iron levels are okay. She's tried iron supplement, but it doesn't do anything. She had a resection last spring and recently had scopes and is in remission (knock wood). Prior to surgery, her doctor said that the anemia must be anemia due to chronic illness and that must be why the iron pills weren't working. But now that there's no seeming inflammation or problem, the continued anemia is a mystery. She's asked that we go back to iron pills and possibly follow up with a hematologist (we saw one several years ago when we were trying to figure out why she wasn't growing -- before the Crohn's diagnosis -- and that doctor just thought she should take iron pills. Then we found out she had Crohn's, so we never followed up with the hematologist.

I just don't know what to think. I had the thought that maybe something else is going on other than Crohn's or a blood disorder that could be causing this.

Any ideas???

My daughter is on Remicade, FYI.

 

[Glockola]

Hello, I happen to suffer from the same problem. Mild anaemia and no current inflammation, no iron deficiency etc.

What is slightly anaemic? Do you have her recent labs? What is her current Hemoglobin, Ferritin, MCV, B12, Folate, Homocystein, MMA, CRP and Albumin levels?
Is her anaemia microcytic, macrocytic or normocytic?

It is very difficult to help without seeing any of the lab values.

I would guess that it is most likely the crohn's and not anything else because the fact that anaemia is so incredibly common in IBD. I would not worry unnecessarily about some other blood disorder.
It could be from a combination of different things. Inflammation, bleeding, vitamin, mineral or protein deficiency etc.

 

[Maya142]

I agree - what is her Ferritin? My daughter needed iron infusions - iron pills did not bring up her Ferritin, which was very low. Her Hemoglobin was 9. This was before she was diagnosed with Crohn's and we only needed to do the iron infusions once and her Ferritin level stayed up and she has not needed more.

I would also visit a hematologist for more clarity - he/she should be able to give you more answers. Our hematologist was very helpful. We learned my daughter has a genetic trait (which is common in my family) which means her hemaglobin will always be low. 10.6-11.1 is her normal, which is a little bit anemic.

I would also make sure her IBD is actually in remission. Has she had an Fecal Calprotectin done recently?

Also, does she have her period yet? If she does, is it heavy?

 

[Trysha]

I agree with the above responses.
It would be a good idea to have the advice of a hematologist.

 

[Anna's Bandit]

I do not think I can be of any help, but I agree that you should see a Hematologist for a complete examination and blood work-up. A few years ago I was so anemic that I had to go to the hospital for a blood transfusion and I received two units of blood. I have taken iron pills in the past, but my doctor says that I do not need to take them any longer. I also used to receive B12 injections. Now the only over-the-counter vitamins that I take are B12 dissolvable tablets and D3. When I have a blood draw I always request a copy of the blood report so that I can read the report myself. Lynda:heart:

 

[cassimw]

Thank you all for your responses! I don’t have her actual labs, I am only going by what the doctor told me. She said that we would test her ferritin levels at her next infusion in two months but suggested that I may want to make an appointment With a hematologist To follow up in the meantime. But that there was no rush on this. I guess that is where we will be headed back. I will report back here if we find anything of interest. Thank you all!

 

[Maya142]

I would definitely get a copy of her labs. Does your children's hospital have a portal? The labs are usually up there. If you use Quest or LabCorp, they have portals too. We actually use the LabCorp portal a lot because it updates more quickly than our hospitals.

It is really helpful looking at labs and looking for trends - for example, did her ferritin increase at all after iron infusions? For how long? Is her HGB currently low or her Ferritin or both? That kind of thing.

Doctors don't always have the time to do that for every kid - they have so many patients.

 

[Glockola]

Yes, agreed!

You should go see a hematologist, or you might just find yourself in the same situation with a normal ferritin and "slightly" anemic again on the next check up.

 

[Anna's Bandit]

What is an iron infusion? The same as a blood transfusion?

I like getting my own copy of test results because on the phone the medical assistant will say everything is "normal" or "stable."