Low Iron Levels

[LD92599]

This is new to me....post chemo, post radiation and yet I'm actually MORE tired now (daily 1-2 hour naps are pretty much a daily occurrence despite a solid 8+ hours of sleep each night). Hemoglobin is 10 - it was 8.2 so going in the right direction. But Iron is 22 and iron saturation is 10%. Oncologist wasn't going to draw labs for my post treatment follow up but I wanted to know the hemoglobin #. I met w/ PCP yesterday and convinced her to order a whole slew of labs to check thyroid, ferritin, etc. She was surprised that oncology didn't refer me to a hematologist. SOOO many specialists these days! Should I seek out a hematologist?

Thoughts from anyone w/ experience w/ this? The results came through MyChart of course after hours and it's a holiday weekend so I'll follow up on Tuesday if I don't hear from the Dr beforehand.

[Peaches Keane]

I was diagnosed with severe anemia a few year ago. I have a hematologist. There have always been a lot of cancer patients in the waiting room. He has since moved to a newly built cancer center. That’s where I go now. I do not have cancer (although it runs in my family). So, your oncologist probably should have done a referral for you. Good for you for advocating for yourself with your PC.

[hillview]

I have chronic iron deficient anemia and am followed by a hematologist and get an iron infusion about once every 12-18 months. It takes a long time to build up iron levels (months). I would see a hematologist

[essnce629]

I have been iron deficient as well and have seen a hematologist for a few years now. I started with weekly IV iron infusions, then monthly, then every 3 months. My iron deficiency was due to extremely heavy periods, which I've now solved. Now that my period is normal I am no longer iron deficient and my last IV iron infusion was 5 months ago.

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[LD92599]

Oh wow I'm glad I posted! I will be making calls on Tuesday to get established with a hematologist! I'll start with my oncologist for recommendations as I'd like to go w/ someone that's also in the cancer center - keep as many appointments as I can, to one location/portal.

[gymnbomb]

Oh wow I'm glad I posted! I will be making calls on Tuesday to get established with a hematologist! I'll start with my oncologist for recommendations as I'd like to go w/ someone that's also in the cancer center - keep as many appointments as I can, to one location/portal.

I think a lot of them are. My mom has seen hematologists (actually hematologist/oncologists) in 2 or 3 different states now and all have worked out of a cancer center and that is where she has gone for iron infusions when she needed those too. She did not have cancer, that just seems to be a common setup for hematologists.


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[umsh]

I have been iron deficient as well and have seen a hematologist for a few years now. I started with weekly IV iron infusions, then monthly, then every 3 months. My iron deficiency was due to extremely heavy periods, which I've now solved. Now that my period is normal I am no longer iron deficient and my last IV iron infusion was 5 months ago.

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Can you share more about how you addressed your heavy periods?

[Melbel]

I also had a hematologist for severe anemia who was part of a cancer center. Doctors blamed my anemia on heavy periods but the problem persisted after a uterine ablation. It turned out I had hemolytic anemia due to Bartonella and Babesia, infections related to Lyme disease that destroy red blood cells. After long term rotating treatments to manage the late stage infections, the anemia issue fully resolved. I have not needed an iron infusion in almost 10 years now. My Lyme specialist is the one who helped me after my other doctors missed the root cause for far too many years. The moral of the story is to advocate for yourself and find the right specialist to address the underlying cause.