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Iron Deficiency Anemia

Switched to Stelara In Oct 2018 since Remicade was no longer working. Stelara is working as her Sed rate tests are normal but the iron deficiency anemia is still there and has to go for infusions every 4 weeks since Ferittin level drops so low. Originally the doctor said that the bleeding would stop once the inflammation was under control, well inflammation is under control per Sed rate blood test but Iron Deficient Anemia as bad as ever. Our Doctor and no answer other then that it could takes years to replenish her iron store which makes no sense to me. Where is the bledding coming from them or is this just something that happens and she will have to go for iron infusions forever. Also could this be causing any scar tissue? Thank you
 
Location
San Diego
I don't have any certain answers for you other than to confirm that the iron deficiency anemia can arise or hang around in spite of no visible blood or bleeding. I had severe anemia when I was first diagnosed. My hemoglobin was down around 6 and my ferritin was way low too. A lot of blood had to go away for hemoglobin to get that low, yet I never saw any bloody or black, tarry stools or any other visible signs of blood loss.

Once I got my Crohn's under control, first with budesonide and eventually with Stelara, the anemia did go away. But I took iron supplements for well over a year to achieve that. And I still don't know where all that blood disappeared to.
 
Iron supplements did not work, only infusions. 9 months on Stelara now and previously 2.5 years on Remicade. There is blood in the fecal occult sample.
 

Maya142

Moderator
Staff member
If she's still bleeding, then her Crohn's is not in remission. She may need a higher dose of Stelara, or more frequent injections, to fully control the inflammation. I'm going to tag my little penguin, since her child had success with a higher dose of Stelara.
 

my little penguin

Moderator
Staff member
If she has fecal occult blood then she is still bleeding .... doesn’t matter that the sed rate reads normal .

As far as building iron stores
Think of your pantry at home
The pantry is iron stores
You grocery shop weekly to keep it full.
While making breakfast lunch and dinner daily .

While she is bleeding and or inflamed her body was consuming 2-3 times what it should for each meal and wasn’t going grocery shopping
You end up with an empty pantry
Takes time to build it back up again

Ds sed rate and crp was normal
But he still had inflammation
He was on Stelara every 8 weeks at 90 mg for 8 months -Started Aug 2017
Still inflamed .
He moved to Stelara every 4 weeks in March 2018

That has made a big difference
That said his iron numbers are still on the lower end of normal
And always have been
Not low enough for an infusion
But lower iron supplements were too hard in his body
But those can take a year or more to be effective
 
Would it be possible to have something bleeding like a fissure or whatever else is there, perhaps something that opened up? Has not had a Calproctin test in a year. The doctor does not run a CRP test.
 
Sed rate doesn't change immediately with inflammation and takes a while to go down after inflammation is gone. CRP is more immediate.

Either way, I would insist on a cal pro test. It is easy to run and a very good indicator of intestinal inflammation.

When was her last FOBT?
 
Anal issues will result in a positive FOBT as would her menstrual cycle and hemorrhoids. But I agree that they probably wouldn't make her need iron. But other conditions unrelated to Crohn's could make you need iron infusions. My first step would be to really put to rest any suspicion of Crohn's inflammation and then look for other causes.
 
I did not mean anal fissure, she had one of those a few years ago. I meant something in the intestinal system that could have opened up. She has Crohn's in both intestines. Her sed rate was very high until the last four months when it went to normal.
 

my little penguin

Moderator
Staff member
If crohns is attacking the intestine
Then it can cause ulcerations which can bleed as well as plain intestines that can bleed .
Definitely ask for more testing
Fecal cal CRp pill cam etc....
Poor kiddo
 
Pill cam was inconclusive. Dr. said is Sed rate was normal then no inflammation. He never wants to deal with difficult cases.
 

my little penguin

Moderator
Staff member
Can he explain the bleeding and need for transfusions then ??
Can you get a second opinion at another kiddie hospital ?
Some will give you a record review (meaning you don’t have to physical be there
Any big kiddie university hospitals within 4-6 hours drive ?

Definitely worth the second opinion.
Sed rate is just one number
 
Well that is good news that the pill cam didn't find anything but it only records what it happens to be looking at, at the moment. When was her last scope? MRE? I know you had another thread going a bit ago but can't remember, has she seen a hematologist?

I would ask for that calpro test. If inflammation shows on there he will be forced to face it.

Maybe time for a second opinion.
 

Maya142

Moderator
Staff member
It's definitely possible to have a low sed rate and have very active Crohn's. Some people have completely normal inflammatory markers while having active disease - my daughter did, when she was diagnosed. ESR was very low - like 2 or 4 or something. But scopes still showed ulcers and inflammation.

If she's still bleeding, her IBD is definitely not in remission, no matter how low her Sed rate is.

My daughter had a similar situation - her Ferritin levels were found to be very low. This was before she was diagnosed with Crohn's. We saw two hematologists and both said she must have bled at some point since her iron stores (Ferritin) were so low, though she had never seen blood in her stool - no red, nothing black or tarry.

We tried oral iron supplements but they didn't increase her iron levels, so moved on to infusions. Those helped her - got her iron levels up.

About a year after she needed iron infusions, she was diagnosed with Crohn's, so her GI thought that she must have bled at some point without knowing it/seeing it. Her GI said if we kept the Crohn's under control, then she shouldn't need any more iron infusions. She was put on Remicade and MTX and her Crohn's got better. And she hasn't needed iron supplements since then.

So I'd definitely want a second opinion with another GI to figure out whether she has active inflammation in her gut or not. You could also see a hematologist and rule out other stuff, but my guess is that if she's bleeding, it's like the Crohn's.
 
We had a second opinion last summer from a Doctor at CHOA (Atlanta, we sent all her records there but cannot afford to get there), he was the one that finally convinced our Doctor to put her on Stelara but he thought every 4 weeks, our doctor has her on weeks. Our doctor worries that when Stelara stops working there will be nothing else. There are no other doctors as we have been to all of them at some point. She saw a Hematologist in the past whom said it was a GI issue. her last scopes were a year ago but pictures not great and rushed. Dr. in GA wants to redo but again cannot get there. She was diagnosed with Crohn's in April 2016, both intestines.
 

my little penguin

Moderator
Staff member
If travel expense is an issue please contact Choa
Most ask those questions
I know our kiddie hospital has asked more than once
The social workers can help you get there

Ds was on Stelara every 8 weeks
Still had inflammation on scopes after 8 months
And was switched to every 4 weeks

The problem is she is bleeding and probably still inflamed

If you saw Choa that was a year ago
You may still need another second opinion since Choa wanted another scope and Stelara every 4 weeks
And your current Gi doesn’t agree
 
CHOA does not pay for travel. doctor only reviewed medical records I sent them. Our doctor here said Medicade would not approve her to have Stelara more often. Do you think scar tissue is being formed which CHOA had mentioned was a concer if I remeber right. Our Doctor seems fine with regular iron infusions.
 

my little penguin

Moderator
Staff member
Chronic inflammation can cause scar tissue if it’s left uncontrolled or under controlled
Our insurance didn’t approve Stelara more often
The doc had to do multiple appeals and peer to peer reviews
I am sorry that your child doc is ok with regular iron infusions

Can’t emphasize it enough to see another doc
There are always new docs in the area
 
There are always new docs in the area
THAT! I was just going to say that. The fellows are constantly graduating and joining teams. We are always getting updates about new docs coming to the practice or old docs leaving. IDK what the details are about why you left some of the oldpractjices but maybe with this new development they might have some good ideas for you.

It is not acceptable for a doc to say, "well insurance won't approve it" without even trying. But he has to have some good information for the appeal because they won't approve an escalation with a normal sed rate. I am thinking CRP, calprotectin, MRE and scopes. A dose escalation is going to be a lot cheaper than an admit down the road.

What other drugs has she tried?
 

Catherine

Moderator
Has anyone the mentioned the possibly of anemia of chronic disease with concurrent iron deficiency anemia? Do you have the iron numbers?
 
Sed rate doesn't change immediately with inflammation and takes a while to go down after inflammation is gone. CRP is more immediate.

Either way, I would insist on a cal pro test. It is easy to run and a very good indicator of intestinal inflammation.

When was her last FOBT?
what does FOBT mean
 
She is going for another iron infusion tommorrow plus blood tests and I also made an appt with her doctor prior to hospital to discuss all the wonderful suggestions everyone made here. Another doctor is not an option as I have been through all of them and there are not many here. Will update when I get latest results. Thank you everyone
 
Fecal occult blood test.

Did they add a cal pro test to the list of labs they are doing? You REALLY need that number. It will force the GI to face the music or point you in other directions.
 
are you guys seeing blood when she goes to the bathroom? I know everyone is different but my daughter bleeds a lot when going and goes at least 5 times a day. And she dies not need iron transfusions regularly. I worry that she probably has some GI bleeding but that something else is also causing the iron issues.

How is her hgb and hematocrit?
 

Maya142

Moderator
Staff member
How old is your daughter? If I'm remembering correctly, she was a teenager when all this started, right? I'm asking because adult GIs will sometimes see patients who are 15-17. And there are a lot more adult GIs than pediatric GIs and it's better to see a good adult GI than a bad pediatric GI.

I would also recommend a hematologist. It's possible there is something else going on too. We saw one when my daughter's Ferritin was very low and he was very helpful.
 
We saw a hematologist when the GI could not figure out the blood loss. Can only see a pediatric GI at her age, not one I called would see her till 18. Will see what happens tomorrow and update. Thank you
 

Maya142

Moderator
Staff member
Good luck - hopefully he will agree that needing iron infusions regularly is NOT normal and will agree to further testing. A CRP and a Fecal Calprotectin are good starting points - they will tell you if there is gut inflammation.

Pill cam was inconclusive. Dr. said is Sed rate was normal then no inflammation. He never wants to deal with difficult cases.
What do they mean inconclusive? Did they not get images? Did the images show any ulcers or any bleeding?
 
Blood results from Friday show low Hemoglobin, low Ferrtin and very high Sed Rate. (reference range for sed rate was 0-20, hers was 100), hemoglobin was 10.8 and low is 11.4 at this lab. Ferritin very low. CRP was elevated. Doctor did not want to run an FOBT or the CRp since he aid they were not accurate although he did do the CRP. Also this week doing a Calprotectin test. She had dramatically had changes in the last 4 weeks since she started Stelara. At what point will she start to vomit daily, diahhrea daily lose wait, when she was diagnosed weighed 60 pounds and sick everyday, do not want that to happen again? Thank you
 
How on earth is a FOBT not accurate?! Either there is blood or there isn't?

Also, I have never heard of a CRP NOT being accurate. I have hardhat it might not be a good indicator as some people do not have elevated CRP and still have disease and also that it just tells you there is inflammation but not much more about what is causing the inflammation.

I am so glad you got him to agree to a cal pro. Hopefully he won't ignore that result. If he does, it will seriously be time for a new doc. That sed rate is very elevated but it takes a while for sed rates to respond to changes in disease activity. The CRP is a more reliable indicator of recent activity in the body.

When you say dramatic changes the last 4 weeks are you taking labs or symptoms? That poor kid. I wish someone would pay attention. Hopefully she won't slide too terribly. IF you get the cal pro in tomorrow, you should have results within a week and then you could have more serious discussions about a plan forward.

FWIW - my daughter's Hgb is currently 9.9. She is actively and very visibly bleeding. Normal our lab is 11.7. Docs aren't freaking out yet BUT they are treating her disease very aggressively.
 
Comparing the lab tests from all of this year and most recently 4 weeks ago there were significant changes. Ferritin always low but not at 4 weeks usually at 6 weeks. Sed rate has been normal this year until this test which was very high at 100.
 

Maya142

Moderator
Staff member
I’m also glad they’re doing a fecal calprotectin. I’ve never heard of CRP being inaccurate - at our hospitals (including one of the top children’s hospitals), they do CRP more than ESR - We were told CRP is a better marker. Plus it’s important to look at the trend - that will tell you if things are getting worse and it sounds like they are. Poor kiddo. I hope the doctor will increase her Stelara after the FCP and the CRP come back. Is she on steroids? She may need them as a bridge until Stelara frequency is increased - that will probably take some appealing and possibly a peer to peer review. EEN would be another option.
 
Nothing makes sense, Hemoglobin and Ferritin both low, sed rate very high, FOBT came back positive but Calprotectin is normal (test took only two days, perhaps wrong?) Doctor is concerned now and wants her to have an MRE next week.
 

my little penguin

Moderator
Staff member
Fecal cal can be off
It’s one of test
Since everything else is high
Glad they are doing an MRE
If it shows something the doc can use it to push the insurance for higher dose Stelara
 
Super strange that FOBT came back positive but cal pro came back normal. Curious, did the GI give you an actual number for the cal pro? Some GI's consider some pretty elevated results "normal".

Either way I am glad he is finally paying attention and she is getting an MRE.
 
Nothing makes sense
Don't try to make sense of this disease. My daughter is bleeding like crazy. Literally, every time she goes there is at least a teaspoon of blood and sometimes her BM's are all blood. AND she goes multiple times a day. The other day she went 12 times! Now granted there is probably other liquid mixed in with said blood but even still...my daughter's HGB is 10.8! That is high for her! Her Heatocrit just went up to 33.6! These are high for m daughter yet she is bleeding more. Go figure.

Think your daughter's HGb is around the same as my daughter yet you are not seeing any blood.

No rhyme or reason to this disease. Just go with the flow.

Glad the GI is looking closer.
 
Has anyone's child experienced cravings. My daughter is taking whole loaves of bread and eating at once, hiding in her room. ate 14 hamburger buns in a two day period, this seems to coincide with low iron.
 
Hmmm, usually iron deficiency cravings are a little different than wanting carbs. I hope you get some answers. I am so interested in knowing more about this.
 
Alexa has still not had the MRE test due to the incompetence of the doctors staff. First they submitted the pre-authorization to the insurance company but did not add any medical records or state why it was medically necessary, that was two weeks ago, plus they put in the wrong hospital. Wednesday they submitted an appeal and corrected hospital. Thursday in the mail I received a letter from Medicaid Insurance stating why the "MRA" test was declined, she was supposed to get an MRE not an MRA, they also submitted for the wrong test, now back to the beginning. What if they had done the wrong test? Anyone else have problems with their doctors' office staff. They also messed up previously and Stelara was delayed a week.
 
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That's just wrong on so many levels. I live in Canada so it's a little different here I think. I'm sure there are others that have experienced similar unfortunate circumstances as you. It seems there is always some form of waiting when it comes to specialists or tests. :(
 
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