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Crohn's Disease Forum » Tests for IBD » Hemoglobin and Anemia


09-10-2014, 11:26 PM   #1
Polaris
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Hemoglobin and Anemia

My hemoglobin has always been normal; however, my iron, ferritin and saturation levels have always been low and/or below normal. I received 3 iron infusions last year (Venofer) until I developed an allergy. But after only 3 doses my ferritin was up to 376 and I felt amazing.

For those that are diagnosed as anemic, does your doctor go by hemoglobin only?

I ask because in the past my GI would look at all my iron studies, but now she's telling me I'm NOT anemic based solely on my hemoglobin results. Which, of course, are currently normal (but my ferritin, iron, and saturation are all low-normal again and dropping). Also, I'm dead tired again, but I suppose this has no significance either.

I'm tired of having to fight for everything. We know our bodies, we know when things change. I wrote her back insisting she prescribe more infusions (there's another iron infusion on the market, Feraheme, that I want to try).
09-11-2014, 06:22 AM   #2
DJW
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Thanks for this post. I'm definitely going to check with my doctor next week.

I hope you get the infusions you need.
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09-11-2014, 08:01 AM   #3
alex_chris
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My hemoglobin has always been normal; however, my iron, ferritin and saturation levels have always been low and/or below normal. I received 3 iron infusions last year (Venofer) until I developed an allergy. But after only 3 doses my ferritin was up to 376 and I felt amazing.
Back when I had extremely low ferritin levels of 11, those levels shot up to 160 after 4 iron IV injections (basically an infusion, but done quickly via injection into a vene). The problem is, if you have problems taking in iron at sufficient levels, ferritin can drop pretty quickly. 2 months later my ferritin was at 35 again.

The way I am dealing with it is remaining in remission (probably the biggest factor, as no inflammation means the intestine can absorb things much better), iron supplement tablets and every odd day an iron + vit c tablet dissolved in liquid.

For those that are diagnosed as anemic, does your doctor go by hemoglobin only?
By definition, anemia is a chronic reduction in the red blood count, so a doctor has to go with the hemoglobin on the readout. What was your hemoglobin level? For women we are talking hemoglobin levels of consistently below 10g/dL (below 6-7g/dL you have severe anemia that gets you into a hospital and requires blood transfusions - been there).

I ask because in the past my GI would look at all my iron studies, but now she's telling me I'm NOT anemic based solely on my hemoglobin results. Which, of course, are currently normal (but my ferritin, iron, and saturation are all low-normal again and dropping). Also, I'm dead tired again, but I suppose this has no significance either.
Again depends on the actual hemoglobin levels. If you have low ferritin levels and they are dropping, the best thing is to start getting them up gain. There is a time lag until hemoglobin drops as well, which can be several months. The body stores iron desposits not just as ferritin, but also in other deposits.

I'm tired of having to fight for everything. We know our bodies, we know when things change. I wrote her back insisting she prescribe more infusions (there's another iron infusion on the market, Feraheme, that I want to try).
Agreed, if iron infusion help you and your ferritin is low again, I would go for another infusion. Be mindful that infusions can hurt your venes and the standard oral way of supplementing your iron in take is recommended over IV iron.
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09-11-2014, 11:31 AM   #4
Polaris
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My hemoglobin has always been around 13-14, which is great. But my ferritin was 11 at it's lowest. Right now it's 42, but it's dropping over the months (from 376 a year ago). I'm hoping my doctor just had a lapse in remembering my situation (she's usually awesome).

I can't tolerate iron supplements, they kill my stomach. The only thing I haven't tried is liquid iron.
09-11-2014, 02:26 PM   #5
alex_chris
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My hemoglobin has always been around 13-14, which is great. But my ferritin was 11 at it's lowest. Right now it's 42, but it's dropping over the months (from 376 a year ago). I'm hoping my doctor just had a lapse in remembering my situation (she's usually awesome).

I can't tolerate iron supplements, they kill my stomach. The only thing I haven't tried is liquid iron.
42 is still ok (but I agree, better do something now than wait for it to drop to below 30). And 13-14 surely as well. Tiredness should not stem from haemoglobin inefficiency then.

As to iron supplements, I have tried 5 different ones which I all could not stomach until I found ones that can be stomached very well and work fine (Tardyferon 80mg per pill - it's a French drug, but I don't think it is available in the US). I believe the solvable iron tablets I am taking (Losferon 80mg) are also not available in the US - but they also help quite a lot, but they can affect my stomach unless I use quite a lot more than the recommended amount of water to desolve them. I would go for continuous oral substitutes for iron first rather than getting dependent on IV iron every few months, but that is just me.
09-13-2014, 02:14 PM   #6
steph_irish
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Hey there. Like u I suffer regarding iron levels. I take supplements. Ferrous sulphate. I know when my bloods playing silly buggers. I take some extra supplements and hey presto I'm feeling normal. Everyone knows their own body. Its a weird fatigue. Body's tired but u don't need to sleep
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