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Katrala

Anemia / Iron Infusions - Advice about post-infusion blood levels

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I'm looking for some help to understand some recent bloodwork.

I slowly became anemic over the past year and only discovered it when I was at a critical level (Hbg of 7, Ferritin of 3, etc.)  I received 3 iron IV infusions during the month of May (total of 1500 mg(?) of Feraheme.)

I had my blood checked a week after the last infusion (June 1st) and again this week (July 6th.)  Most of my numbers seem good, but my Ferritin levels have dropped a lot, but are still within normal range.  Has anyone else had a drop in Ferritin after infusions?  Is this normal or something I should be concerned about?

Here are my levels (June 1st, July 6th):

Ferritin (320.1, 108.1)

Iron (88, 92)

Hemoglobin (12.4, 13.4)

Hematocrit (41.7, 43)

Other variables:

  • I am an endurance athlete (cyclist) and, on average, spend 7 hours+ on the bike each week (I ask a lot of my body)
  • I am currently training to climb Mt. Rainier (14,000+ feet) and I can only do that if my hemoglobin stays in the normal range (I climb in less than 2 weeks, so I think I'm good there.)
  • I have had a hysterectomy, so the anemia is not related to any type of menstrual issues, etc.
  • I had a celiac panel done before I began the first infusion and it came back normal - my levels were not elevated at all.  Could celiac still be the root cause (malabsorption) of the anemia? 

Thank you in advance for any information, advice, etc.

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3 hours ago, Katrala said:

I'm looking for some help to understand some recent bloodwork.

I slowly became anemic over the past year and only discovered it when I was at a critical level (Hbg of 7, Ferritin of 3, etc.)  I received 3 iron IV infusions during the month of May (total of 1500 mg(?) of Feraheme.)

I had my blood checked a week after the last infusion (June 1st) and again this week (July 6th.)  Most of my numbers seem good, but my Ferritin levels have dropped a lot, but are still within normal range.  Has anyone else had a drop in Ferritin after infusions?  Is this normal or something I should be concerned about?

Here are my levels (June 1st, July 6th):

Ferritin (320.1, 108.1)

Iron (88, 92)

Hemoglobin (12.4, 13.4)

Hematocrit (41.7, 43)

Other variables:

  • I am an endurance athlete (cyclist) and, on average, spend 7 hours+ on the bike each week (I ask a lot of my body)
  • I am currently training to climb Mt. Rainier (14,000+ feet) and I can only do that if my hemoglobin stays in the normal range (I climb in less than 2 weeks, so I think I'm good there.)
  • I have had a hysterectomy, so the anemia is not related to any type of menstrual issues, etc.
  • I had a celiac panel done before I began the first infusion and it came back normal - my levels were not elevated at all.  Could celiac still be the root cause (malabsorption) of the anemia? 

Thank you in advance for any information, advice, etc.

What does your doctor think?  

I was like you.  Anemia, (low ferritin and hemoglobin) except I opted not to get transfusions.  On top of that I have a genetic anemia which pretty much masked the iron-deficiency anemia.  Oh, I am a cyclist too!  

Which  celiac tests did you take?  If the full panel was not given, you could ask for it.  If my doctor had not ordered the full panel (TTG, DGP, EMA) my celiac disease would not have been caught!  I test positive to only the DGP (even in follow-up testing).  You are becoming anemic for a reason.  You should be checked by a GI.  About 10% of celiacs are sero negative, so biopsies should be obtained.  The transfusion may hold until your race, but if your hemoglobin drops, I would not consider it.  There is some long-term damage that can occur to your heart (if I can recall, but I am not a doctor).  

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I should have said - I'm already blood / biopsy diagnosed (6 years ago.)

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Sorry, I should really read your posting.  That is what I get when I am trying to multi-task!  ?

  Have other things been ruled out (e.g. Crohn's)?  Have your doctors found the cause of your anemia?  

If I recall, my ferritin increased from a 2 to a 55 in just a few months of being gluten free.   

Was the last celiac disease test given exactly the same as the first?  A complete panel?   Did you ever get a follow-up Endoscopy?  Maybe it is time to see what is going on.  

Edited by cyclinglady

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    Why....why would your doctor not follow the standard of care for testing celiac disease?  I think you need to think about  finding another doctor.  If you are in the US, you can “walk” into a lab and order the test and pay cash: https://labtestsonline.org/tests/celiac-disease-antibody-tests No, your result does not significantly lower your odds of getting a celiac disease diagnosis.  She ordered the LEAST commonly used test, especially since she only ordered that one alone.  I think she thinks you do not have celiac disease, but that you may have a gluten sensitivity.  But that is wrong!  There is no test for gluten sensitivity.  http://www.cureceliacdisease.org/screening/ https://www.mayocliniclabs.com/it-mmfiles/Celiac_Disease_Diagnostic_Testing_Algorithm.pdf https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/ https://www.verywellhealth.com/celiac-disease-blood-tests-562694 https://www.niddk.nih.gov/health-information/diagnostic-tests/celiac-disease-health-care-professionals I am not a doctor though.  Perhaps, you can ask her why she did not order the complete panel or at least the screening tests most often ordered for celiac disease. Know that some celiacs are asymptomatic (no symptoms) Some just have one symptom.  Some have classic symptoms.  I presented with only anemia and no GI symptoms with only a positive on the DGP IgA.    I hope this helps.  
    Got the result today, and it is indeed the IgG only, and it is "negative" with a result of: <10.0 Units I have sent a message to my doctor requesting that she at least also order the TTG IGA test. However, I'm assuming that this result does at least significantly lower the likelihood that I have celiac? This is all just a shot in the dark anyhow... but after 8 years of unsatisfactorily diagnosed mystery joint pain, I don't want to only half-explore an option and then abandon it without a reasonably definitive result.
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    DGP IGA
    DGP IGG
    EMA
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