Iron deficiency anemia without an apparent cause

Posted by ellie0989 @ellie0989, Aug 18, 2023

I'm a 21-year-old female. Last year, after a routine trip to my primary care physician, I received alarming blood test results and was sent to a hematologist who diagnosed me with severe iron deficiency anemia. Initially, the anemia was thought to be caused by heavy menstrual bleeding, and so in addition to being given two iron infusions, I was also put on an oral contraceptive that has halted the heavy bleeding entirely. Over the course of the last few months, the typical symptoms of iron deficiency anemia began to return (dizziness, fatigue, restless leg syndrome, headaches, etc.) and after another trip to the hematologist, I was once again diagnosed with anemia and have at this point received the first of two more iron infusions. After consulting with my hematologist, he recommended that I take another trip to see my primary care physician who can hopefully run some more tests to try and determine the cause of the anemia. Does anyone know of any other common causes of iron-deficiency anemia or has anyone had a similar experience?

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I'm no doctor but I recently went through this, had an endoscopy done and they found bleeding in my intestine which was repaired and now my iron etc is coming up. Good luck! Hope you figure it out.

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Hopefully they can refer you to a gastroenterologist who will probably do a colonoscopy, endoscopy, and perhaps a capsule endoscopy if those don’t show anything. I’m assuming you haven’t noticed any blood loss? I was told even microscopic loss of blood over time can add up. Take care!

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@deemar

I'm no doctor but I recently went through this, had an endoscopy done and they found bleeding in my intestine which was repaired and now my iron etc is coming up. Good luck! Hope you figure it out.

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I’m glad your condition is improving! Thanks so much for sharing.

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@arla

Hopefully they can refer you to a gastroenterologist who will probably do a colonoscopy, endoscopy, and perhaps a capsule endoscopy if those don’t show anything. I’m assuming you haven’t noticed any blood loss? I was told even microscopic loss of blood over time can add up. Take care!

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No, I haven’t had any noticeable blood loss. I’m hoping I’ll be referred next week when I see my family physician. Thanks for your help!

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I originally entered this thread trying to see if others possibly connected their sudden iron deficiency to the CoViD vaccinations. There is no medical support - at this time - for such an anomaly. A gastrointestinal workup is a wise next step for you, also, perhaps a bone marrow biopsy if your hematologist thinks so.

I also recently experienced a second dive in my iron readings, not as severe as the first; by the time I got to my hematologist the readings had mostly spontaneously corrected; I am taking a second series of Venofer iron injections notwithstanding at the doctor's recommendation. A GI series showed no significant bleeding problem for me. Unhappily, my hematologist thinks that I have a deteriorating kidney problem but my PCP does not; right now I tend to agree with my PCP. I declined for now a series of Procrit {Retacrit} injections. The hemoglobin {chronically marginally low} does not really support that therapeutic route so far, plus the iron must be normalized at the same time for Procrit {Retacrit} to work as I understand that.

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@ellie0989

No, I haven’t had any noticeable blood loss. I’m hoping I’ll be referred next week when I see my family physician. Thanks for your help!

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Did you ever take oral iron supplements? Or were your numbers so bad they went right to the infusion? In my case I took supplements and there was no improvement at all, almost like I wasn’t absorbing iron, so eventually I had infusions. They will always look for a source of bleeding first, usually before considering anything else. I’m curious, did you start to see your levels fall again approximately 3 months after your infusion?

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@corsair9

I originally entered this thread trying to see if others possibly connected their sudden iron deficiency to the CoViD vaccinations. There is no medical support - at this time - for such an anomaly. A gastrointestinal workup is a wise next step for you, also, perhaps a bone marrow biopsy if your hematologist thinks so.

I also recently experienced a second dive in my iron readings, not as severe as the first; by the time I got to my hematologist the readings had mostly spontaneously corrected; I am taking a second series of Venofer iron injections notwithstanding at the doctor's recommendation. A GI series showed no significant bleeding problem for me. Unhappily, my hematologist thinks that I have a deteriorating kidney problem but my PCP does not; right now I tend to agree with my PCP. I declined for now a series of Procrit {Retacrit} injections. The hemoglobin {chronically marginally low} does not really support that therapeutic route so far, plus the iron must be normalized at the same time for Procrit {Retacrit} to work as I understand that.

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Thanks for the advice! I’m also in the process of receiving two more Venofer injections. I’m hoping my doctor is going to conduct a GI series when I visit next week.

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@arla

Did you ever take oral iron supplements? Or were your numbers so bad they went right to the infusion? In my case I took supplements and there was no improvement at all, almost like I wasn’t absorbing iron, so eventually I had infusions. They will always look for a source of bleeding first, usually before considering anything else. I’m curious, did you start to see your levels fall again approximately 3 months after your infusion?

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I did initially try taking oral iron supplements, but that was unsuccessful. For my first round of infusions, the source of the blood loss seemed obvious, but now there is no clear answer. Last year, my hematologist only checked my iron levels a month after my infusions and that was that. I have no idea when my levels started dropping again. Overtime my symptoms started to gradually come back, and I eventually went back to the doctor because my family noticed the severe decline in both my mood and energy level. My hematologist mentioned that I could just have trouble absorbing iron and will probably need iron infusions for the rest of my life, but he hasn’t done any tests yet to rule out other possible causes. I’m hoping my primary care physician will recommend some next steps.

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@ellie0989

I did initially try taking oral iron supplements, but that was unsuccessful. For my first round of infusions, the source of the blood loss seemed obvious, but now there is no clear answer. Last year, my hematologist only checked my iron levels a month after my infusions and that was that. I have no idea when my levels started dropping again. Overtime my symptoms started to gradually come back, and I eventually went back to the doctor because my family noticed the severe decline in both my mood and energy level. My hematologist mentioned that I could just have trouble absorbing iron and will probably need iron infusions for the rest of my life, but he hasn’t done any tests yet to rule out other possible causes. I’m hoping my primary care physician will recommend some next steps.

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Hopefully the PCP can investigate a little more! I asked that because I was told the infusion gives you 3 months worth of iron in one shot. My levels, coincidentally, started to drop again at around 3 months after the infusion. We caught it because my doctor ordered monthly blood work to see how the infusion was holding. I received another one not long ago so we’ll see what happens this time!

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@arla

Hopefully the PCP can investigate a little more! I asked that because I was told the infusion gives you 3 months worth of iron in one shot. My levels, coincidentally, started to drop again at around 3 months after the infusion. We caught it because my doctor ordered monthly blood work to see how the infusion was holding. I received another one not long ago so we’ll see what happens this time!

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I will definitely bring this up with my hematologist. At my last appointment he told me to try and recognize which symptoms hit me first going forward and then schedule to have my levels tested. If my levels aren’t too bad, he’ll have me come back in a month to recheck. If they are bad, I’ll get an infusion, but I would rather find and fix the source of the issue if there is one rather than having all of these infusions. I’m so sorry for what you’re going through. I really appreciate the insight!

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