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Crohn's Disease Forum » General IBD Discussion » Anemia and Iron Infusions


08-25-2017, 12:26 PM   #1
RippMama
 
Join Date: Apr 2013
Location: Utah
Anemia and Iron Infusions

My recent blood tests showed pretty severe anemia. Hemoglobin 10.3, Ferritin <1. Doc sent me for Injectafer infusions. Labs taken BEFORE the second infusion (but results not available until after the infusion) have me very confused. Hgb dropped to 10.1, but Ferritin is 389 (normal range is 10-200)!! Anyone else had anything similar to this? I had Venafer infusions last year, when my numbers weren't quite so severe, and all my levels came up nicely. Now I am concerned about too much iron! And all of this on top of being in clinical remission, so no idea why my levels get so low.
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Diagnosed with Crohn's in 1997
Small bowel resection & anastomosis in 1999
Years of remission
Small bowel resection & anastomosis in 2015
Meds: Humira
08-25-2017, 01:26 PM   #2
aypues
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My recent blood tests showed pretty severe anemia. Hemoglobin 10.3, Ferritin <1. Doc sent me for Injectafer infusions. Labs taken BEFORE the second infusion (but results not available until after the infusion) have me very confused. Hgb dropped to 10.1, but Ferritin is 389 (normal range is 10-200)!! Anyone else had anything similar to this? I had Venafer infusions last year, when my numbers weren't quite so severe, and all my levels came up nicely. Now I am concerned about too much iron! And all of this on top of being in clinical remission, so no idea why my levels get so low.
Yes, I had a ferritin in the 400's briefly after my 2nd Injectafer. About 2 months later my iron was low again (but ferritin normal) and we did another 2 infusions of Injectafer. That's when I got into trouble. What happens when you over load on iron is your immune system goes in to remove the excess iron. Iron is highly regulated by the body - it can cause infections if present in too great of concentrations. The immune system then sends out macrophage cells. They recover the excess iron then go and settle in your joints and give you temporary arthritis until the macrophages die - about 2-3 months!!

Be very careful about monitoring the iron/ferritin and don't do any more Injecater beyond the first 2 infusions unless you're REALLY low again. It can also cause hypophosphatemia, bone problems (temporary I think).

The main problem though is the microcytic bleeding from the disease. If that's still going on the anemia won't ever really resolve with iron infusions. You have to get the disease more under control. Once they put me on Remicade it stopped the blood loss and I didn't need anymore iron - oral or infusions.
08-25-2017, 01:47 PM   #3
RippMama
 
Join Date: Apr 2013
Location: Utah
The big mystery in this (at least for me) is why it's happening. My disease is completely controlled. I have been in remission for at least 18 months. Had a colonoscopy 2 weeks ago, and the doc said, "If only all my patients looked this good!" No inflammation whatsoever, CRP levels are normal, calprotectin levels are normal.

I am very concerned about iron overload, as the ferritin was so high before I even got the second round. Hoping to hear back from my doctor today.
08-25-2017, 02:18 PM   #4
Lucy7
 
Join Date: Aug 2017
Hi RippMama, on what medication are you to control your Crohn, is it local medication (such as budesonide, mesalamine formulation) or systemic? If it is local, possible that you have either Crohn related inflammation elsewhere in your body, or other immune related problems. Also did you have any surgery previously?

Last edited by Lucy7; 08-25-2017 at 02:46 PM.
08-25-2017, 03:00 PM   #5
RippMama
 
Join Date: Apr 2013
Location: Utah
Hi RippMama, on what medication are you to control your Crohn, is it local medication (such as budesonide, mesalamine formulation) or systemic? If it is local, possible that you have either Crohn related inflammation elsewhere in your body, or other immune related problems. Also did you have any surgery previously?
I'm on Humira every 2 weeks. Had surgery 2 years ago and 18 years ago. Vitamin D and B12 are normal.
08-25-2017, 03:25 PM   #6
Lucy7
 
Join Date: Aug 2017
Do you have the results of the other measures such as transferrin saturation? Ferritin alone is insufficient information... the other infos are necessary to know whatever or not your body is even using the iron being injected. For how long your Hgb has been low?
08-25-2017, 03:50 PM   #7
RippMama
 
Join Date: Apr 2013
Location: Utah
Before any infusions, transferrin was 5% (very low), iron binding capacity was 488 (higher than normal), Iron was 22 (low). Hgb is almost always on the low end of normal or lower, but never this low since I hemmorhaged during a pregnancy in 2007.
08-25-2017, 04:15 PM   #8
Lucy7
 
Join Date: Aug 2017
I suppose you do not have those informations for after the infusion. Just something else to add, 10.3 to 10.1 isn't really considered as a drop, it is constant. Reason is that a slight variation of water alone in the blood might explain that.

The high ferritin is not all that surprising given your infusion (from what I have seen with others who had infusions) even after one. I'd be worried if it was above the 600-700 range (for women).

I also have seen individuals with Crohn who always had those low with little improvement in these measures regardless of their conditions (flare or remission).

Don't worry, often it takes time for the Hgb count to increase after a fall. Your doctor will I'm sure investigate the matter and monitor you closely. Make him/her know that you are concerned.
08-25-2017, 05:11 PM   #9
aypues
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Colonoscopy alone will not be of help if you have disease in the small intestine where a majority of Crohn's cases are. Did you have an MRI Enterography as well?
08-25-2017, 05:21 PM   #10
RippMama
 
Join Date: Apr 2013
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No, but I don't think there is any reason to, as all markers of inflammation are normal.
08-25-2017, 05:53 PM   #11
Lucy7
 
Join Date: Aug 2017
No, but I don't think there is any reason to, as all markers of inflammation are normal.
They are not substitute to imagery tests... sometimes inflammation do not show up in blood tests... other times ulceration (with no or few inflammation) in the small bowel causes bleeding. I agree with aypues that more expected causes have to be ruled out.
08-26-2017, 07:23 AM   #12
Guerrero
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Yes, I had a ferritin in the 400's briefly after my 2nd Injectafer. About 2 months later my iron was low again (but ferritin normal) and we did another 2 infusions of Injectafer. That's when I got into trouble. What happens when you over load on iron is your immune system goes in to remove the excess iron. Iron is highly regulated by the body - it can cause infections if present in too great of concentrations. The immune system then sends out macrophage cells. They recover the excess iron then go and settle in your joints and give you temporary arthritis until the macrophages die - about 2-3 months!!

Be very careful about monitoring the iron/ferritin and don't do any more Injecater beyond the first 2 infusions unless you're REALLY low again. It can also cause hypophosphatemia, bone problems (temporary I think).

The main problem though is the microcytic bleeding from the disease. If that's still going on the anemia won't ever really resolve with iron infusions. You have to get the disease more under control. Once they put me on Remicade it stopped the blood loss and I didn't need anymore iron - oral or infusions.
very interesting... i'm always anemic too, even with humira that ended up failing... i started entyvio, hope it will reolve anemia too.
08-26-2017, 07:27 AM   #13
Guerrero
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Do you have the results of the other measures such as transferrin saturation? Ferritin alone is insufficient information... the other infos are necessary to know whatever or not your body is even using the iron being injected. For how long your Hgb has been low?

my doctors only test me iron and ferritin, but never transferrin. Can you explain why transferrin would be important too?
08-26-2017, 07:30 AM   #14
Guerrero
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I confirm also that after my last iron injection 2 months ago, ferritin went higher than the normal range... and it normalized after one month, but dropped again after 2 months! (few days ago...) so I did another injection to pump it again...

I guess I have either inflammation or bleeding going up, what do yo think?? or is it normal that level drop after 2 months?
08-26-2017, 08:04 AM   #15
Lucy7
 
Join Date: Aug 2017
my doctors only test me iron and ferritin, but never transferrin. Can you explain why transferrin would be important too?
For Crohn and other chronic conditions the other tests such as TIBC, UIBC and transferrin saturation gives cues on whatever or not the iron is even used. When in spite of supplementation the Iron isn't used, this often means there are inflammation even though CRP and inflammatory markers came up negative. In fact given that tests like CRP are more specialized they rely on specific markers, some will consider them less sensible but more specific than Iron store, saturation etc. by the body which involves more pathways and is more general indicator for the overal health of the person.

Thing is that the inflammatory process is complex and involves more than one pathway... particularly with a systemic disease such as Crohn's not to mention that other factors than inflammation are involved in the disease process which more specialized tests might miss.
09-03-2017, 06:20 PM   #16
Jabee
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Have you had an endoscopy to check your duodenum for inflammation? Iron is absorbed in the duodenum and when I had no iron in my body with a hemoglobin of 9 my GI found severe inflammation, ulceration and a stricture there. I highly recommend you get an endoscopy to look there.
09-04-2017, 05:46 AM   #17
Catherine
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Please look anemia of chronic disease. ACD doesn't respond to iron treatment. The underlying condition need to be treated.
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Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
09-12-2017, 04:59 PM   #18
Guerrero
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Have you had an endoscopy to check your duodenum for inflammation? Iron is absorbed in the duodenum and when I had no iron in my body with a hemoglobin of 9 my GI found severe inflammation, ulceration and a stricture there. I highly recommend you get an endoscopy to look there.
What did happen to you then? you treated the inflammation and now your iron level is normal?

Aparently even with inflammation in the ileum, iron may not be absorbed...

I'm worried if i'll ever absord iron corectly again. My doctor mentioned I'm not absorbing it because of a mix of thing from ulcers, inflammation and past surgery....
09-12-2017, 05:43 PM   #19
Jabee
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Is your GI thinking anemia of chronic disease? We treated my acute duodenal inflammation with high-dose PPIs and my anemia with iron infusions. I am still relatively anemic (hemoglobin of 10-11) and take Entocort now since the inflammation has moved around in my small intestine. I found this article helpful.


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4298217/

Last edited by Jabee; 09-13-2017 at 01:57 PM.
09-13-2017, 12:30 PM   #20
Guerrero
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If I get it well, with anemia of chronic disease you may have normal levels of ferritin but I dont.

10-11 is still low yes, you should maybe ask for another infusion
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