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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@j77

That is horrible,but it does not surprise me at all.If this GI Doctor does not help you go to another one.If the GI Doctors don't help you go to a Holistic Doctor.Holistic Doctors truly want to help and will not leave any stone unturned to try to get you back to being Healthy.They also have more time and can put more effort into looking into your symptoms than a conventional Doctor.

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@j77 well it appears that I will not be taking much of anything for awhile. Oncologist is sure I have hemolytic anemia 😳. Vitamins don't help. My RBCs are being crushed 😳 I am seeing new leukemia doc on Monday. Will see what he says. Always something

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@jerrysgirl3

@j77 well it appears that I will not be taking much of anything for awhile. Oncologist is sure I have hemolytic anemia 😳. Vitamins don't help. My RBCs are being crushed 😳 I am seeing new leukemia doc on Monday. Will see what he says. Always something

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That is so Frustrating.I will pray that you feel alot better soon.

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@j77

That is so Frustrating.I will pray that you feel alot better soon.

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@j77 thank you. 😊

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@pamrod02

Hi, I was diagnosed as slightly anemic about a year ago. I am 69 years old. I've had every blood test, colonoscopy, endoscopy, and a bone marrow biopsy. My diagnosis is CCUS, Clonal Cytopenia of Unknown Significance. In other words, the doctors don't know why I'm anemic? They tell me to keep taking iron. I have more labs, and appointment with oncologist and primary doc next month. Anyone else been diagnosed with CCUS?

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I was diagnosed with CCUS in October. I’m 66 years old and have always had ITP or low blood platelets. As I was checking for my numbers for my platelets I saw that that my white blood count was extemely low and that’s how all this started - that was in August. I went through all the testing, including a bone marrow biopsy, which they did find small amounts of cells that were abnormal. I was at Mayo in October and won’t see my doctor again until end of January. Right now they want to monitor my blood draws, check with other doctors and try to see what, if anything, they’re going to do. As my doctor said they want to be very sure exactly what is wrong because the remedies for most of this are quite toxic and they need to be sure of what needs to be done. It’s hard to wait because the numbers are so low I need to do quite a bit of isolating, anxious to see what we’re going to do.

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@mlarneson

I was diagnosed with CCUS in October. I’m 66 years old and have always had ITP or low blood platelets. As I was checking for my numbers for my platelets I saw that that my white blood count was extemely low and that’s how all this started - that was in August. I went through all the testing, including a bone marrow biopsy, which they did find small amounts of cells that were abnormal. I was at Mayo in October and won’t see my doctor again until end of January. Right now they want to monitor my blood draws, check with other doctors and try to see what, if anything, they’re going to do. As my doctor said they want to be very sure exactly what is wrong because the remedies for most of this are quite toxic and they need to be sure of what needs to be done. It’s hard to wait because the numbers are so low I need to do quite a bit of isolating, anxious to see what we’re going to do.

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I am in much the same situation. I have anemia to the point of having iron infusions, and at one point a transfusion of blood. I was diagnosed in 2020 as smoldering but my oncologist and specialist are not sure this anemis is due to myeloma. So I wait and watch. Recently I was in the hospital and one of the tests they did was a bone marrow biopsy, i had one at diagnosis but none since then. . In the past I have been sitting at 20% involvement. This test showed 30 to 50%. So with those numbers am I on the low end and still smoldering or close to that magic number of 60%? Right now they want to see if my hematocrit and hemoglobin continue to fall. If so I will start treatment. They haven't done any treatment even though I am high risk. Their statement was that if they pull the plug and start treatment I will be put under stress of the drugs and if the anemia is not due to myeloma it won't suddenly go away. So they would treat but I would continue being anemic. Meanwhile wait and watch and get nervous when labs are drawn.

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