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01-21-2014, 06:23 PM   #1
my little penguin
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Low ferritin level

Gi nurse called DS 'a ferritin level is 9.7 ( normŗl is 10-300).
Waiting for Gi to call back with instructions .
Anyone else ever deal with this one???
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01-21-2014, 06:47 PM   #2
Mehita
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Unfortunately, yes. Our range is 7-142 and DS hovers in the teens. When he dropped below the range last summer they had him start iron pills. If I recall correctly, we did ferrous sulfate, either 300 or 60mg. Something like that. Once a day. It's available in a liquid too.

It did cause some constipation and odd colored poop. After the fact I learned that there are other easier on the stomach forms of iron. Iron chelate maybe? I believe Carolinalaska was the one who mentioned it.

We did the iron for three months and his ferritin went from 7 up to 50, so it was successful for DS. After looking at DS's labs just now, it seems to fluctuate all over the place every month.

The question to ask though is why his ferritin has dropped. What's going on inside? KWIM?
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- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
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- Small bowel resection, Jan 2013
01-21-2014, 07:17 PM   #3
my little penguin
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We have a GI appt soon so the why will be discussed for sure
Just starting to research and get parent stories so I can figure out what is what .

His peptamen jr has
10.5 mg total of iron ( 3.5 mg per shake ).
01-21-2014, 07:54 PM   #4
Maya142
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Yes, unfortunately. My daughter's was 6, I think. She started taking iron supplements but they made her very nauseous and her ferritin didn't really increase much so eventually we had to do iron infusions.
The iron infusions were very easy, took 45min to 1hr and helped her really quickly. She had been completely exhausted and we couldn't figure out why until her ferritin level came back low. We never saw blood in her stool either.
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diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

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dx with JIA at 14
Ankylosing Spondylitis at 18
01-21-2014, 08:30 PM   #5
Mehita
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This was suggested to me by a friend. Not entirely sure if it's okay for kids or IBD though. We never tried it.

http://www.vitronc.com/product-information
01-21-2014, 11:37 PM   #6
my little penguin
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His total binding iron capacity was high -450( normal something to 420)
And his iron levels were normal though any thoughts why
Ferritin is low
Tbic is high
And
Iron is normal
???
01-22-2014, 01:47 AM   #7
Catherine
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Is his hemogoblen level low as well?
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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)
01-22-2014, 01:51 AM   #8
Catherine
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Our normal course action for low ferritin is to supplement iron for two months then retest.
01-22-2014, 02:16 AM   #9
Mehita
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Ferritin is the stored iron in your body and can be affected by surgery. Didn't he have his tonsils out recently? Is this the first time he's had iron checked since then?

The only other thing might be chronic inflammation. That's what our GI thought DS's issue was, coming off a bad flare last spring. Ferritin was low, but iron was normal. Has Sed or CRP been checked recently?

Some IBDers are just low in ferritin no matter what they do. Part of the nature of the disease.
01-22-2014, 04:59 AM   #10
Catherine
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http://www.labtestsonline.org.au/und...tibc/tab/test/

My reading of the results is that he has low levels. And maybe heading towards anemia due to low iron.

Or

Due to recent surgery he body may have had higher than normal needs for iron and is just taking a while to recover.
01-22-2014, 05:22 AM   #11
my little penguin
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Surgery was in the beginning of October so shouldn't it be normal by now.
It's been over four months .
Sed rate and crp was very normal .
He did have ulcers in his duodendum in August but his sed rate was higher then ( 22 in August and is 12 now - normal is up to 20).

He gets mouth ulcers once a week almost every week.
01-22-2014, 05:48 AM   #12
DustyKat
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It is a progression of iron deficiency anaemia to have low ferritin, followed by high TIBC and then dropping serum iron levels.

Have his levels been trending this way...Lowering ferritin and increasing TIBC?

Now why?

Do you think he has any low grade inflammation present?
Iron deficiency tends be a slow insidious type of thing as does the loss of blood via low grade inflammation, much like a dripping tap. Not much on its own but it adds up over time.

Although he is receiving iron via his peptamen and the dose would appear to be sufficient in a healthy male child is it enough to stay on top of things when intestinal issues have been present in varying degrees for some time.

Absorption...is the iron being absorbed? If not why? Could there be a structural problem like scar tissue or, I imagine the iron in peptamen jr is non-heme, perhaps a supplement that is heme would result in better uptake if there are no structural issues.

Dusty. xxx
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01-22-2014, 07:26 AM   #13
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C had low ferritin with other iron levels normal and HGB low normal. GI said his was due to chronic inflammation and/or malabsorption like Dusty said.
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dx March 2012 CD

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PAST MEDS: remicade, oral mtx, humira
01-22-2014, 07:49 AM   #14
my little penguin
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Does c take iron supplements ?
At what point should you supplement ?
01-22-2014, 07:59 AM   #15
Catherine
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What if ferritin has been acting as a marker of inflammation. This would explain why other inflammation markers also dropped at the same time as ferritin.
01-22-2014, 11:03 AM   #16
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My son had ferritin of 9 before. He was put on an iron liquid which has eventually brought the levels up to around 60.
01-22-2014, 12:11 PM   #17
Stephyjane
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This is very interesting, my daughters recent blood tests shows her Ferritin as 9. Nothing has been mentioned from her drs.
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Mum to Ella diagnosed with Crohn's disease June 2012 aged 9yrs


Medications:
125mg Azathioprine

3 monthly bloods and calprotectin.

Past Medications

Lansoprazole 30mg
Ferrous Fumerate iron

Infliximab infusion on hold due to reactions.
Scopes being done Mar 2014 to determine whether Ella can maintain without infliximab.
Scopes showed remission, biopsies showed mild inflammation.
Sulfasalazine stopped due to neutropenia
E.N tried and failed.
01-22-2014, 12:20 PM   #18
my little penguin
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I am thinking absorption issues since his vitamin d is lower as well (24 ).
Despite taking 400iu in vit plus 450iu of vit d in the peptamen jr .
850 IU a day should be enough vitamin d .

No call back either ...grrr..

If ferritin was lowered by inflammation decrease shouldn't it still be normal since if. No inflammation is present then the average joe on the street has a normal ferritin level?
Would the Tbic still be high if he wasn't having an issue with iron ?

I don't know if he had these numbers checked in the past since it was never brought up as an issue before so I didn't pay attn especially since most of his symptoms are not typical crohn's ( like lots of bleeding kwim ).
01-22-2014, 12:24 PM   #19
Clash
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C tried iron supplements that the GI gave him, supposed to be easier on the stomach, can't remember what they were. They constipated him severely and made him nauseous. It wasn't too long after his loading doses they retested his iron and it was back in the normal range. GI said it looked like his wasn't a malabsorption issue then but only time would tell if he also had that issue.

I don't remember all the details just at the time the GI was happy it wasn't absorption issue though later it seems he contradicted himself and made it all cloudy for me again. Ughhh docs.
01-22-2014, 12:27 PM   #20
my little penguin
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Other problem if its absorbs ion will a oral supplement work ??
The infusion.version has an anaphylaxis risk which he already has proven quite capable of performing ( hence no more remicade ).

Very frustrating
01-22-2014, 12:30 PM   #21
Maya142
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My daughter has had high ferritin due to inflammation - if there is no inflammation we were told it would be normal, not low. When it was low though, it was very low and so it was clear that she needed iron.
We had to see a pediatric hematologist to get her iron infusions - her GI suggested it since like your son MLP, M does not have typical Crohn's symptoms - no bleeding and at the time we were dealing with constipation not diarrhea.
01-22-2014, 12:33 PM   #22
my little penguin
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Yep that would be my son - constipation - he takes miralax everyday .
01-22-2014, 12:37 PM   #23
Maya142
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The constipation issue made taking iron tablets very difficult since they made her more constipated and nauseous. That was one of the reasons we went to iron infusions.
01-22-2014, 01:46 PM   #24
Tesscorm
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My understanding of how all the iron numbers relate is a bit fuzzy (ie ferritin, HGB, etc.), but my understanding is the same as Maya's in that inflammation causes ferritin levels to rise. Not sure how it works but what I've read is that during periods of inflammation, there is an increased demand for iron (HGB???) and this causes the body to increase ferritin levels to satisfy this increased demand. But my understanding IS sketchy about this!!!

FWIW, and contradictory to what I've just written , S's ferritin levels were between 14 and 20 in the year prior to starting remicade. Since February 2013, since which I'm assuming his inflammation has been dropping, his ferritin has consistently increased to 67 in November.

Re Vit D - vitamin D is better absorbed with taken with oil (don't mean a spoon of oil but maybe after a salad with oil/vinegar). But, Stephen takes a liquid vit D that is in an oil. One drop (not a full dropper!) equals 1000 IUs and it tastes exactly like a drop of olive oil. Not sure the mechanism of the absorption with this as the one drop completely disperses on your tongue, I can't imagine much of it is actually absorbed in the intestines. I've bought it at the local health food store and it was very inexpensive (ie less then $20 for 1000 drops) - if you'd like, I can check the brand at home. (Just a PS... S takes his Vit D at the same time as he takes his krill oil supplement - so even if the liquid vit D is still absorbed by his intestine, the krill oil supplement may also be enough 'oil' to facilitate absorption??)
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Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil

Last edited by Tesscorm; 01-22-2014 at 02:09 PM.
01-22-2014, 02:32 PM   #25
DustyKat
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That is exactly what happens Tess. Inflammation increases the bodyís demand for iron and subsequently ferritin rises to meet this. Therefore little or no inflammation should result in normal ferritin levels. Low levels will point to iron deficiency.

Perhaps taken in the context of the wider picture mlp your lads history may well fit into the slow onset that is often seen with iron deficiency anaemia. No doubt he would have had periods of quite large demand being placed on his Iron stores and whilst he is receiving secondary supplementation via peptamen jr it isnít enough to restore a negative balance. It may be also worth considering that he is indeed absorbing the iron and this secondary supplementation has slowed the deficiency issue but again it isnít enough to reverse the amounts already lost, particularly since he is now in a good place and growing and even further demand is now required for iron.

Vit D - I would still review this mlp. I personally donít think it is a sufficient amount when dealing with Crohnís.

Dusty. xxx
01-22-2014, 07:23 PM   #26
my little penguin
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GI order 160 mg ferrous sulfate ( 50 mg elemental ) once a day.
Pharmacy has to special order it.
I asked about chelated iron. so waiting for a call back.
01-22-2014, 08:44 PM   #27
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Grace's ferritin is treading down and now she's at 7. I asked but the said it's not to worry about it. Hmmm......maybe I should.

I hope all is well and fixed for your boy very soon.
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Ibd (microscopic)
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dx Juvenile Arthritis
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dx Erthema Nodosum
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Bladder and Bowel Dysfunction
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Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
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01-22-2014, 10:22 PM   #28
my little penguin
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It depends in the complete iron studies and CBC etc plus the ferritin number .
01-22-2014, 11:57 PM   #29
Catherine
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I am going to try and rephrase my post about ferritin being a marker of inflammation.

When inflammation is present you can get a false normal or high for ferritin. But is will never give you a false low.

What I was trying to say was when you get inflammation under control the ferritin can appear to be dropping but it may actually not being dropping as previous reading were false normals.

Hopefully the supplements will result in a rise in hemoglobin levels, quickly.
01-23-2014, 08:03 AM   #30
Livilou
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Liv's ferritin was 9 a few months ago and ferrous sulfate supplementation gave her gastric upset; I switched her to a chelated iron called Ferrochel and she tolerates it great, Labs from 2 weeks ago showed ferritin at the 13-14 range, She supplements with 1 tab/day, but website says 2 tabs can be taken daily if needed. Good luck! Kim
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