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Ferritin

Got my bloods back today...
All ok, white cells low but on aza so thats expected, my ferritin is 9... It says less than 12 shows no stores...
A) is this causing my exhaustion?
B) what now? Tablets? Shots?
xxx
 

rygon

Moderator
It can be the reason (or one of many). I found with low ferritin levels i became out of breath very easily and was constantly tired.

Best to find out the cause of the low levels. Its either you are not absorbing enough iron (diet on due to crohns in that area) or that you loosing more blood than your body can replace properly.

Mine was due to blood loss due to crohns, pred helped a bit but in the end i had to go onto remicade, but before that happened i tried an iron infusion (felt dizzy so they stopped) and iron tablets (can make you constipated and take longer to build the levels up)

May want to look into eating more iron rich foods if you can
 
I was in a very similar position to you. I was extremely tired, even after being in remission. Ferritin was 8. I had no obvious cause for my anaemia (must have been left over from the flare), so was started on a 3 month course of iron tablets. (my haemoglobin had not dropped enough to need infusions). After the 3 months, ferritin was up, haemoglobin was fine, and I haven't needed the tablets since.
 
Thanks :)
I'm in flare, have been for...15months or so, plus defo not absorbing properly!
I emailed the Gastro to ask what to do, I'm a little dubious of tablets, would I absorb them any better than food? Infusions sound friendlier and quicker!
xxx
 
Thanks :)
I'm in flare, have been for...15months or so, plus defo not absorbing properly!
I emailed the Gastro to ask what to do, I'm a little dubious of tablets, would I absorb them any better than food? Infusions sound friendlier and quicker!
xxx

my ferritin was 8.6 (23 to 366 normal range). so they gave me iron infusions, 1 infusions every two weeks x 4, i felt the difference two weeks after the first infusion, and when it was all finished my ferritin reached 67.

but it was amazing how much better it works compared to iron pills or liquid. before infusions i ate plenty of meat and took prescription iron pills/liquids for years but never absorbed anywhere near the amount of iron i get from infusions.

now, ive been doing infusions for two years and at last check my ferritin was at 136.

l8tr
 
Some meds also interfere with iron absorption - pariet (rabeprazole) being one of them that many here take. My ferritin was down to 3 quite regularly over a three year course. Lots of blood transfusions and iron infusions despite a diet very heavy in red meat and no apparent bleeding. No idea what changed, but it has now been almost a year since I have needed blood or iron and all my numbers are at the top end of normal.
 
Some meds also interfere with iron absorption - pariet (rabeprazole) being one of them that many here take. My ferritin was down to 3 quite regularly over a three year course. Lots of blood transfusions and iron infusions despite a diet very heavy in red meat and no apparent bleeding. No idea what changed, but it has now been almost a year since I have needed blood or iron and all my numbers are at the top end of normal.
3? for three years? thats crazy.

yeah, blood transfusions are great.. ive only ever had one but i felt fantastic afterwards... better then iron infusions.

peace out.
 
Thanks guys . . . .
One more question, no reply from the GI yet, so, options are either, see my GP (I've been offered an appointment on the 12th, but can phone tomorrow for a quicker appt), or I can take it into my own hands and go get some suppliments, frankly, I feel awful so I'm willing to take the expense that will incur.
Anyone any experience of 'spatone' as a suppliment? It says it's easier to absorb than Iron tabs (an obv consideration with CD) but I think I would need more than the 2 sachets a day to actually build reserves.
Thanks again! xxx
 
I am less than impressed...
Phoned the GI sec as he has been ignoring my email, she says she'll ask him but may be next week before I get a response...
So I went to see my GP who said its just my iron stores that are low, my blood iron is in normal limits but significantly down on the last one (i did refrain from asking her where she thought blood iron came from when you had NOTHING left in stores) she wants me to be tested for vitamin D deficiency, fab, so we're NOT treating a problem we know is there but we ARE looking for a new one...
Needless to say, self medication begins tomorrow...
xxx
 
I am less than impressed...
Phoned the GI sec as he has been ignoring my email, she says she'll ask him but may be next week before I get a response...
So I went to see my GP who said its just my iron stores that are low, my blood iron is in normal limits but significantly down on the last one (i did refrain from asking her where she thought blood iron came from when you had NOTHING left in stores) she wants me to be tested for vitamin D deficiency, fab, so we're NOT treating a problem we know is there but we ARE looking for a new one...
Needless to say, self medication begins tomorrow...
xxx
doctors argue amongst themselves all the time so, like in the show HOUSE, next time you see your doc dont be afraid to ask where iron goes to your stores or to your blood? ... and hows it spent?.. i think iron stores are used to make hemoglobin? hows your hemoglobin?

my doc left me hanging with virtually no blood iron and little stores for years expecting the iron pills/liquid to help which they didnt & they agrevated my crohns . so in the end he ordered iron infusions. which helped tremendously. so iron infusions is my suggestions to you.

take the vit d test, if its free.

gluck
 

Catherine

Moderator
You all need the iron levels to see what happening iron. If your hemoglobin is normal your body may not be storing iron as it using all the iron to keep your hemoglobin up.
 
Depending on where you live, there is an excellent over the counter iron called proferrin. Expensive, but I found it tolerable, and when I was absorbing iron I found it worked a whole lot better. It is sourced from ox blood, and can make your movements quite dark, but absorbs better because it is not mineral or plant based.

And yes, it was three years worth of severe anemia - infusions and transfusions approximately every 7 weeks, like clockwork, many done through the ER. Done in combination with a quack for a supposed Crohn's specialist who only wanted to tinker with Remicade dosages. Wouldn't place a standing order for blood work (despite the fact that apparently it is required for remicade). I fired him!
 
The trouble with most types of iron tablet etc is that you can only absorb 5-10% of the iron... I found this stuff, it's a liquid and tastes rank, but its in sachets that aren't too big, it has 40% absorbable... I'm taking double the recommended daily dose, but it can't harm can it?! So far, no adverse effects on my poop, no pain etc not sure theres any improvement either but I've only had 4 doses, so we will see!
My doc requests I check my own bloods, but doesn't react when I ask them to treat what I find?! Hmm... I have a new registrar who seems pretty good, phoned me back last week and discussed the iron issues and agreed to prescribe me something, just waiting for the script to come through... Also he wants a 'journey to the centre of Gail' (pill cam) done and thinks fecal calprotectin is a better indicator than CRPs and says my platelet count shows inflammation somewhere... He has also come up with a plan b for if the above fail :) I like registrars :))
Thanks for all the replies :) I will keep you updated on if this stuff works for me :)
xxx
 
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