Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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


Katrala

Recommended Posts

Katrala Contributor

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master
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).  

Katrala Contributor

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

cyclinglady Grand Master

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.  

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,339
    • Most Online (within 30 mins)
      7,748

    Brody Quintin
    Newest Member
    Brody Quintin
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.8k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Wheatwacked
      I use Listerine.  Rinse first to soften the tarter, then brush with Oral B electric toothbrush super sonic.  The $15 ones at the supermarket.  At 73 I still have all my teeth.  While a blood test can measure iodine levels, it's not the most accurate method for assessing iodine status, and urinary iodine excretion is considered a better indicator.  Have any of your dermatologists ever done a biopsy for dermatitis herpetiformis?  I may have missed it.  Note the similarity of Casal's necklace to one of your symptoms. Pellagra rash is a characteristic skin manifestation of niacin (vitamin B3) deficiency. It typically presents as:  Erythema: Red, sunburned-like areas of skin, often on the face, neck, arms, and legs.  Scaliness: Dry, flaky skin that may become thickened and crusty.  Hyperpigmentation: Darkened patches of skin, particularly in sun-exposed areas.  Casal's necklace: A dark, pigmented band around the neck.  I am currently taking these} Vitamin D 10,000 IU (250 mcg) DHEA 100 mg 500 mcg Iodine  10 drops of Liquid Iodine B1 Thiamin 250 mg  B2 Riboflavin 100 mg B3 Nicotinic Acid 500 mg 4 times a day for hyperlipidemia. B5 Pantothenice Acid 500 mg Vitamin C 500 mg     Selenium 200 mcg  Several times a week
    • Itsabit
      I will. Thanks. I did just have mg B12 drawn. I should also state that I am already taking a Vit D supplement, as I live in the US in New England sand just about everyone who lives here is deficient, esp during our winters with less exposure to natural sunlight. I was also taking a chewable bariatric vitamin as well because of my food issues related to my cancer treatment (which was many years ago, but there are long term effects.) I just stopped it because I was unable to get any gluten information about it. And it did contain iodine. Is there even a vitamin that doesn’t? I don’t know, but I will check. I also take Calcium and Magnesium in the form of “Rolaids” for leg cramps/spasms, with good effects. Thanks. 
    • knitty kitty
      @Itsabit, Ask your doctor for an erythrocyte transkelatose test to measure thiamine.  It's a better measure of thiamine deficiency than a serum test.
    • Scott Adams
      Most toothpastes are naturally gluten-free, but this article may be helpful:  
    • Scott Adams
      This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
×
×
  • Create New...