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Need Help - Hematology won't do testing

Blood Cancers & Disorders | Last Active: Jan 30, 2023 | Replies (77)

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@colleenyoung

Hi @wiggins32, this sounds very distressing for you. I'm glad that you've had testing to rule out cancer.

The standard tests for irondeficiency anemia are complete blood count (CBC) test to measure:
- red blood cells (RBCs)
- white blood cells (WBCs)
- hemoglobin
- hematocrit
- platelets

Additional tests to determine the underlying cause ususally include
- Further blood tests to determine how severe your anemia is and help determine treatments.
- Endoscopy
- Colonoscopy
- Ultrasound

Tissue samples or bone marrow biospy are not typically done. You can read more here:
https://www.healthline.com/health/iron-deficiency-anemia#diagnosis
When you say that you are allergic to oral iron, does this include not getting iron through diet? Do the transfusions help? What sources of IDA have they ruled out?

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Replies to "Hi @wiggins32, this sounds very distressing for you. I'm glad that you've had testing to rule..."

Hi Colleen. Thank you for your response. I've had all the tests you mentioned. No type of anemia has been investigated, so I really wish I knew. I do not understand how it's okay to always have very low iron saturation, even after infusions. As time goes on, the infusions are less effective, too. I only needed 1 infusion in 2018 and same in 2019, twice in 2020, and 4x in 2021 and this year. And there is no in-between period of feeling well. There is some relief from certain symptoms, but short-lived over past 2 yrs. My symptoms are many and significantly life altering. My diet was excellent until 4 months ago, but I'm having trouble holding down food since July. Malabsorbtion is only thing Ive been told. Since July, I've had CT scans and ultrasound od gastro and everything is "normal" results. It's scary and I don't know where to turn because it seems my symptoms are increasing and new ones have come on. I was 100% healthy before this started.