Have you been evaluated for Anemia of Chronic Disease?

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Have you been evaluated for Anemia of Chronic Disease?

  • I have been evaluated and I do have Anemia of Chronic Disease

    Votes: 12 37.5%

  • I have been evaluated and I DO NOT have Anemia of Chronic Disease

    Votes: 5 15.6%

  • I have not been evaluated.

    Votes: 15 46.9%
  • Total voters
    32
David

David

Co-Founder
Joined
Feb 13, 2006
Messages
13,705
Location
Naples, Florida
I'm curious how many of you have been evaluated for Anemia of Chronic Disease (also known as Anemia of Inflammatory Response)? If you do have it, how has this affected your treatment regimen?

Thanks :)
 
hmm. I'm not really sure, I know I have Iron deficiency anemia and pernicious anemia, for which I take biweekly B-12 injections and am supposed to have Iron infusions (haven't had any in a while). Is this different than Anemia of Chronic Disease?
 
Anemia of Chronic Disease (ACD) is a form of anemia where you actually have plenty of iron in your cells as they're storing it as ferritin. However, you have symptoms of iron deficiency anemia because your cells aren't releasing the iron as they are keeping it away from pathogens that need it to proliferate and be jerks. From what I'm reading, it's common in people with Crohn's Disease. The thing is, the treatment for ACD is to cure the underlying condition. LOL? So I'm curious what physicians are doing if someone with Crohn's Disease has ACD.

Hmm, maybe I should have posted this as, "Are you anemic and have you had your ferritin levels checked?"
 
My daughter has hemoglobin level of 90. Her ferritin levels have raisen but the other iron level have gone down. Her levels looked like thalmassia for a long time which we are currently trying to out rule. She is still taking iron and the specialist believe it won't be needed once the Crohn's is under control only started treatment for the underlining condition 11 days ago.
 
Not sure but the specialist told me 140-150 is normal.

Below 90 is the level where Sarah's specialist would consider blood transfusion. Was surprised that Sarah had been able to swim 8 times week at these levels until 3 months ago when the weight loss (12kg) and the stomach issues become severe.
 
That would be g/L then. Here is the states, for children, around 111 to 160 g/L is considered normal.

If her ferritin is elevated, other iron levels have dropped despite supplementation and has moderately low hemoglobin, that potentially points to Anemia of Chronic Disease. Has her TIBC (Total Iron Binding Capacity) been tested?
 
I've never heard of this and it's very interesting to me. It seems the body is trying to protect itself by holding onto the iron? How did you come across this? I'm going to comb through Chloe's bloodwork and see what I can find.
 
LittleChloe said:
It seems the body is trying to protect itself by holding onto the iron?
Click to expand...
Correct.

LittleChloe said:
How did you come across this? I'm going to comb through Chloe's bloodwork and see what I can find.
Click to expand...
I comb the internet and books for everything potentially IBD related and then try to understand it (some of this stuff melts my brain) :)

From what I understand, it's also possible to have iron deficiency anemia AND anemia of chronic disease at the same time which can be quite severe. I'm still a little unclear on that and have sent some emails to see if I can learn more.
 
Okay David, so being that I have a most awesome health plan that lets me see test results online, I went to look up my most recent Iron results.
Iron(Fe): 13 ug/dL (Normal: 28 - 170)
Total Iron Binding Cap(TIBC): 525 ug/dL (Normal: 250 - 420)
% Iron (Fe) Saturation: 2% (Normal: 25 - 50%)
So I have low Iron and low Iron Saturation but high Iron binding. Is this was you are talking about? That's so interesting. I didn't even know I had high iron binding!
 
Wow, thank you so much for all you work. It's because of your prodding that I've had chloe's b12 levels and vit d levels done and we now supplement appropriately. However we've not been able to get higher than a 10.6 hemoglobin and she is low in iron. We don't want, and have not had, any blood transfusions so keeping those numbers good is very important to us. This gives me another little avenue to research. I've got to say that I have gotten more from your threads ( and others) on this forum than I ever got from our GI or any other medical professional. THANK YOU!
 
Emily said:
Okay David, so being that I have a most awesome health plan that lets me see test results online
Click to expand...
Wow, that's super cool! Your results point more to iron deficiency anemia since you have elevated TIBC. If it was low TIBC, that would point more to ACD.

Iron saturation is simply serum iron (your 13) divided by TIBC x 100 and that is your percentage.
 
Haemoglobin 93 L
Hct 0.30 L
RBC 4.1
MCV 72 L
MCH 23 L
MCHC 317
RDW 16.4
Platelets 312
White Cells 3.9 L
Neutrophils 2.6
Lymphocytes 0.7 L
Monocytes 0.4
Eosinopils 0.1
Basophils 0.0

S Iron 3 L
S Trf 1.8 L
S TRF Sat 7 L
S Ferritin 80

These are Sarah result from December. S Ferritin is also marker for inflammation.
 
We also get interesting note as follows on her results:-

Haemoglobin Electrophoresis 15/12/2011

B Hemoglobin A2 2.8 (1.8-3.5)
B Haemoglobin F <1.0 (<1)

Comments
Results are suspicious for alpha thalassaemia trait. Testing of the partner for thalassaemia prior to pregnancy is suggested to determine whether genetic counselling and/or prenatal diagnosis are required. DNA analysis is recommended to investigate for alpha thalassaemia. This specimen has been sent to Southern Health Clinical Genetics Laboratory for further evaluation. Please refer to their report to follow.

S IRON 2L umol/L (5-30)
S TRF 1.9L g/L (2.0-3.6)
S TRF. SAT 4L (10-45)
S FERRITIN 162 NG/mL (30-200)
 
Hi David, I am also member a thalassaemia forum, they tell these results best fit amenia of chronic disease.

Just need to rule out thalassaemia.

Have you read about iron overload which can occur with IBD and thalassaemia.

Catherine
 
I have been tested a few times.

First in hospital, my haemoglobin was slightly low (around 10.5-11 I believe). They then checked my ferritin to see if I was a candidate for iron, and decided that no, I wasn't. So they told me 'sometimes this happens when people are ill, we'll treat the problem and see how you are in a few weeks'. They discharged me with pred and followed up with a blood test a few weeks later- haemoglobin had sneaked back into normal range (11.5 which isn't great but that's the cut off my hospital uses for young females).

6 months later my GP checked for anaemia, and found that my haemoglobin had dropped again, but this time my ferritin was low too (12), so gave me iron tablets. This soon sorted me out, and my haemoglobin has been in the 12s ever since.

So was my original anaemia ACD and not linked to my later iron deficiency anaemia? Or is it more likely that the ferritin test while I was ill gave a false high?
 
With females it is important to have iron levels test at the right time in the cycle. Iron level should be highest at the end of cycle.

From what I have read people with Crohn's go between ACD and iron deficiency anaemia. I know that it is important to only be taking iron supplements when the iron studies show iron deficiency. Otherwise iron can build up in the body's organs.

http://www.australianprescriber.com/magazine/20/3/74/6/
 
I was initially diagnosed as having anemia of chronic disease. My problem was never iron deficiency. Regardless of weekly B12 injections, folic acid supplements, etc., my hematocrit and hemoglobin never got above 8.6 and 27. Then my gallbladder decided to go out and I had a stone obstructing my liver. When I turned a lovely shade of glowing yellow, it was what we call a clue that something else was wrong. I needed a couple of units of blood before surgery. My blood type is A+, but they still had trouble finding units of blood because of some weird autoantibodies I had. After pumping up me up to H&H of 11 and 30 following transfusion, within a month I was down to 6.2 and 19 with my H&H. Apparently this drop was caused by mass hemolysis, or destruction of red blood cells. Long story short, my GP sent me to a hematologist because my GI doc was ignoring the problem (fired him for this). Turns out I had developed Autoimmune Hemolytic Anemia. Hem/Onc says the hemolytic storm was triggered by the first dose of Reicade I got while in the hospital. Apparently some people with IBD develop AIHA as a part of the disease. It is more common in folks with UC and less common for folks with CD like myself.
 
Thank you for sharing that KYGirl. What is/was the treatment for the autoimmune hemolytic anemia and did it help?

Do you know what tests and findings there were that allowed him to rule out anemia of chronic disease and diagnose autoimmune hemolytic anemia? Was there an antibody test such as the Coombs’ test?
 
The first line of treatment was high dose prednisone. I was on 60 mg daily for almost 6 months, then slowly tapering for the next year. Prednisone was not having the desired effect, so I was given infusions of IVIg (intravenous immunoglobulin G) which is human antibodies. That did not work either. The next step was Rituxin treatments. I had a total of 4 (1 x week for 4 weeks). My blood counts improved marginally after this. I think I improved to an H&H of 9 and 28. The final step for me was splenectomy. The spleen is where blood cells that are tagged by the body for destruction for some reason or other (old, damaged, virus, etc.) are destroyed. Apparently the more blood cells the spleen catches and kills, the bigger the spleen gets, so it can catch and kill more and more, all the while growing bigger and bigger(splenomegaly). The immediate danger of an enlarged spleen in rupture with severe internal bleeding and death if not immediately corrected. My spleen was starting to grow quite a bit. After splenectomy my blood counts improved to H&H of 13 and 39 and have held steady for the past several years.

The testing included both direct and indirect Coomb's tests, serum bilirubin, serum haptoglobin, reticulocyte counts, H&H and RBCs, Urinalysis for hemoglobin and bilirubin, serum lactate dehydrogenase (LDH), and peripheral blood smear. Testing can also differentiate whether it is warm antibody or cold antibody AIHA (warm antibody is most common) as the treament can vary a little accordingly. Hope this helps!
 
Hi David

It is looks like my daughter Sarah no longer has anemia of chronic disease.
She has had anemia for least 2 year and 9 months (when she first blood test was done). Hemoglobin is now 115 from 90 in only 6 weeks.

Only really change has been treatment for crohn's with pred and aza.

Although she iron levels are unchanged or slightly worse in the same period.
 
I only got the results over the phone with GP and he was more concerned about white cells, iron studies and inflammatory markers. But I did get a copy of the tests and have include them below.

Ferritin 56 ug/L (15-165)
iron 2 umol/L (7-27)
transferrin 2.7 g/L (2.5-3.8)
transferrin sat 3 (13-47)

Comment
Low iron saturation may be seen in inflammatory disorders.

I find the comments on the tests interesting.

I just want to believe she must be getting better, as her hemoglobin has gone up. :)
 
Saw gi who said treatment is working as sarah hemoglobin levels rising. Ferritin levels is ok. Other levels haven risen yet as her body is too busy making red blood cells.
 
Everytime I get my bloods done, my doctor always says "You're a little anaemic". Not exactly sure what he means by that.

:3
 
Mostly likely it means your hemoglobin is a little lower normal for your age and sex. But you want to know is why your hemoglobin is low. Have you had iron studies, folate and b12 tested.
 
They wouldn't be included in a FBC, would it? I can't ever remember specifically getting tested, I thought B12 deficiency, I thought that was only the case for people suffering with their terminal ileum, my Crohn's is specific to my large bowel, so much so it's classified as Crohn's Colitis.

I've never had any problems regarding energy/fatigue, unless I'm flaring. But thanks for the reply, Catherine.
 
Iron 75 40 - 190 ug/dL
Ferritin 189 18 - 370 ng/mL
TIBC 192 Low 250 - 400 ug/dL
% Saturation 39 15 - 50 %

WHOA, bringing back an old post! Got my results back this week on my blood test also looking for anemia (i noticed when i cut myself it takes awhile for clotting)

Aside from platelets being mildly low (which have been now for years), it shows my total iron binding capacity is low, but my iron and ferritin are normal.
I'm currently undiagnosed but wanted to add this to the community, I see my GI next month and will post what we think from here (Doc doesn't think Celiac or Crohns, instead an exteme case of gut dysbiosis/sibo (also not confirmed) riiiiiiiighht lol)
 
I've had anemia from many years, my iron count is back tomorrow more but my ferritin is still extremely low.
 
History: searching for relief from RLS/PLMD (restless leg, periodic limb movement disorder), ended up with hematologist who gave iron infusion. NO CHANGE in iron levels after 3 month check up after infusion; 2nd infusion, checked after 6 weeks and anemia resolved (RLS not completely but better) w/ ferritin at 100. One month later, ferritin dropped to 60 and other iron tests low, rather than normal. Hemoglobin 11.9, just under normal. Resection of ileum (4ft.) 40 years ago, and diarrhea mostly controlled w/ questran. No flares during this period and no sign of blood loss. Guessing my hematologist will suggest bone marrow biopsy and I am wondering if that should be the next step or if my Crohn's situation should be evaluated more before that? Thanks in advance.
 
I have had severe anemia associated with my mild Crohn's, but it was further evaluated and found to be iron deficiency anemia, presumably due to intestinal bleeding.
 
Thanks. How did you find out it was intestinal bleeding? There is no stool evidence of blood and my Crohn's is symptomatically dormant (I am assuming it is dormant because I have no pain and maybe only a weekly bout of diarrhea).
 
It was presumed to be intestinal bleeding even though no bleeding was ever directly observed. My hemoglobin went from 14.5 to 6.7 over a couple of months, so a lot of blood disappeared somehow. Ileal ulcers were observed via capsule camera endoscopy, and there were no other wounds or conditions that could account for any blood loss. And the follow-up anemia testing showed that it was iron deficiency anemia. Ergo, the blood must have "seeped out" of the intestinal ulcers over the months.
 
I'm undiagnosed and precisely have that but my doctors never noticed it !

I have high ferritin, nearly normal RCP, slightly low Iron, low Hemoglobine, low red blood cells !
 
I voted yes as I have sort of been evaluated, it was mentioned that it's most likely the case.
I also had iron deficiency anemia but after an iron infusion my ferritin is now 212 (up from 18) but my iron saturation went down to 16 (minimum for this lab), iron from 14 to 10 (also the minimum) and transferrin went from 3.2 to 2.6 (this lab has a range of 2.0 to 3.2 for normal). HB went from 110 to 111 (or 11.1) which is lower than the labs min of 115. HCT also hovers around the minimum value or just below. And I'm still short of breath, not as bad as it was but not great either.

Does this sound like anemia of chronic disease?

If so what could be done about it?
 
wantok said:
History: searching for relief from RLS/PLMD (restless leg, periodic limb movement disorder), ended up with hematologist who gave iron infusion. NO CHANGE in iron levels after 3 month check up after infusion; 2nd infusion, checked after 6 weeks and anemia resolved (RLS not completely but better) w/ ferritin at 100. One month later, ferritin dropped to 60 and other iron tests low, rather than normal. Hemoglobin 11.9, just under normal. Resection of ileum (4ft.) 40 years ago, and diarrhea mostly controlled w/ questran. No flares during this period and no sign of blood loss. Guessing my hematologist will suggest bone marrow biopsy and I am wondering if that should be the next step or if my Crohn's situation should be evaluated more before that? Thanks in advance.
Click to expand...

If you've been chronically iron deprived then your bone marrow cannot do its job. If you are low in iron you won't make enough red blood cells no matter how good your bone marrow is. You probably need a LOT more iron AND to get the disease under control. I was really undertreated for many years before I went to an IBD specialist. I had chronic iron deficiency and anemia. I switched docs because I got fed up with my old GI doc who was maxed out on his knowledge of Crohn's. My new doctor ordered heavy duty iron infusions (Injectafer - 750mgs per dose) and Remicade plus Cellcept. My iron, ferritin, hemoglobin, and albumin are all normal now. That's not to say I'm out of the woods by any means - my fecal calprotectin is still very high -818 and I have joint/muscle pain all over the place. We are increasing my Remicade. Anyway - for you I would ask about higher dose iron since you are still low and a more aggressive treatment course for your disease. It will require some work.
 

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