HealingWell
Search Close Search
☰

Iron dextran

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/3/2016 4:35 PM (GMT 0)
Hi everyone!

I'm still in remission after all these months, which has been nice. Even so, what I went through last summer has still affected me.

Despite my best efforts, my body does not seem to be absorbing iron in any oral form, whether it's food or supplements. I had several blood transfusions in the summer and it seems to be the iron from recycled hemoglobin that is maintaining my levels. My levels aren't dropping, they're just not rising. My doctor wants to give me iron dextran injections, or an iron IV. She said that it's normal for the bowel to not absorb much iron for up to a year after the kind of severe colitis I had.

What I don't understand is, why would having colon damage from past severe UC be in any way affecting iron absorption? It's my understanding that iron is absorbed in the small intestine, the colon has nothing to do with it. If somehow my small intestine is involved, then it's never been just UC. So once again I am questioning my diagnosis.

The only thing I can find online is that iron absorption stops when the immune system is active, in the presence of an infection. It's to prevent the infection from absorbing the iron and getting stronger. If that's what's happening in my body, then it sort of confirms what I originally thought, which is that my flare was likely due to a pathogen of some kind. What concerns me is that if my body is not absorbing iron still, that the infection may still somehow be there.

I've read online that people who are in remission can suddenly go into flare from taking oral iron. I didn't have this problem, I just didn't absorb it.

My other concern is that, maybe there's a good reason why my body doesn't want to uptake iron, and by getting dextran injections or IV I may trigger something undesirable. Does anyone have experience with parenteral iron like my doctor is suggesting? I'm having trouble making an informed choice.

By the way, my ferritin is at 7 and the absolute bare minimum is 15. Even at 15 I'd still be considered anemic. The unfortunate thing is that I've never had blood work done to determine my ferritin level at any point in my life, so I don't know what normal even looks like for me. All I know is that my hemoglobin used to be 160 and now it's 118, which is below normal but, as my doctor said, "Acceptable".

Thanks for reading!
Posted 1/3/2016 5:19 PM (GMT 0)
i dont absorb iron well either. seems like a lot of UC people have this problem. it's just from the blood loss and the fast food transit. i can assure you it does not mean you have crohns based solely on that symptom. c diff also eats up your iron store because it uses iron as food.

and no, your body isnt rejecting iron. trust me, you NEED it desperately to be alive. you wont make blood cells if you dont have it.

the infusions will hopefully get your levels up. i've had to get a lot of them in different "groupings" depending on the kind of iron. venofer is what i use now because i became allergic to ferrlecit (sp?). venofer is a pain because you need 5 infusions in 10 days. that's just how they are dosed. ferrlecit i did once every week for 8 weeks.
Posted 1/3/2016 5:32 PM (GMT 0)
I have 1 BM a day and I'm not bleeding anymore, so there shouldn't be any losses for those reasons.

The c diff thing is interesting. A pathogen is my prime suspect. I may be in remission now because my diet is perfect, my life has zero stress, and I take just the right ratio of probiotics. Because I'm not on any medications and I went from being so severe to so much better, my GI doctor suspects that I may be over IBD forever. Despite my best hopes, I'm skeptical.

I'm super paranoid that if there's an occult pathogen happening, that it's simply lying dormant and may be triggered in the future, especially if I take iron. I'm wondering, in that case, if maybe it doesn't matter how I'm given iron - orally, IM or IV - because the increased iron would still feed an occult infection? Iron is described as being potentially "irritating" to IBD patients, and I'm wondering if it's because iron feeds bad bacteria in addition to just being intense for the bowels to process.

I also know that some people become reactive to their own probiotic gut flora which explains the auto-immune aspect of IBD, and the symptoms all seeming like an infection.

Maybe I should just hold off on freaking out about it. I could get iron and everything could be fine. It's just that modern medicine claims that there's not usually a pathogen involved and it's just "auto-immune", but I've never believed that. Most of the studies on IBD done in the 80's show mycobacterium and other hidden pathogens which don't show up on standard testing -- in which case, increasing iron could feed them and cause a flare. Maybe the fact that my iron is low right now is a blessing in disguise and that's why my body doesn't want to absorb very much.

I lost a lot of blood and was malnourished for many months, losing all of my body weight. My hemoglobin before the transfusions was 58 (120 is normal) and my ferritin was 2 (15 is lower range of normal). So I was REALLY depleted. But even with blood transfusions I'm not in normal range and there isn't much indication that my levels are rising.

Post Edited (Chiron) : 1/3/2016 10:35:50 AM (GMT-7)

Posted 1/3/2016 8:30 PM (GMT 0)
are you sure you have no inflammation at all?? if there is any, that would be causing the problem, too.

i dont know your medication/scope history but when was your last scope and how extensive was your UC?

obviously, when you are so ill it will take a while to get your levels up again. i had a lot of blood transfusions but my doctors have always followed them up with the iron infusions.

yeah, it's tricky with iron supplementation. c diff was my problem for a while and that made my iron needs go up because the c diff was eating all my iron stores. i take oral iron now in the hopes i am absorbing it a little but im not sure i am. havent been to the GI in a while.

are you having any gi symptoms at all?? i only ask because i have IBS, SIBO and ileocecal valve syndrome. this is why my iron is low even though my UC is in remission. with SIBO, the bacteria in the small intestine use your nutrients for food instead of you absorbing them.
Posted 1/3/2016 9:03 PM (GMT 0)
There's a lot of research on the subject you can look up on PubMed but many types of "bad" bacteria in the gut feed on iron. By making it less available, the body is attempting to starve them out, hoping the good bacteria will begin to flourish again. The best thing to do is accept IV iron infusions, which will take iron right into the flood stream without it needing to pass through your GI tract.
Posted 1/3/2016 9:06 PM (GMT 0)
Are you sure that your hemoglobin is in the hundreds? I am pretty sure that normal ranges are about 12-15
I also think that Iron levels are supposed to be higher like in the hundreds. Is it possible that you are mixing up the two...
as with ferratin mine is very low (its the stored iron in your body)
was 3 now its about 5.

What type of oral iron supplements have you taken? what are the doses?
what is your calcium intake like?

Generally, Ferrous sulphate is the most easily absorbed. taking about 140 mg of ferrous sulphate will yield about 45 mg of iron.
there is no use taking it every day, it is actually best to take it very other day, this will minimize abdominal upset and does not change the absorption rate. Slow FE is a delayed release one that will cause even less abdominal discomfort.
Make sure to increase fluid intake when on iron as it can constipate you.

You need to give it about 3-4 months before you say the oral iron is failing you (many types are actually wastes of time get the Ferrous sulphate and try that)

take it with vitamin C to improve absorption
and do not take it near calcium/ dairy as that will inhibit its absorption

chicken liver has a lot of iron per serving
Posted 1/4/2016 1:04 AM (GMT 0)
the iv drip takes a lot of time. get feraheme in an infusion.
Posted 1/4/2016 6:52 AM (GMT 0)

Bacon Girl said...
i dont know your medication/scope history but when was your last scope and how extensive was your UC?

First colonoscopy in Jan 2015 following several years of subclinical symptoms. Three weeks later began my first major flare. Ended up in the hospital for a month in April on IV prednisone, eventually infliximab, various ASAs, etc. Nothing stopped it. They recommended bowel surgery but I refused. Went home to figure it out or die trying. Lost all body weight. That was in May. I had 3 scopes while I was in the hospital.

The initial diagnoses in Januray was Crohns based on the patchy inflammation pattern. Then it was changed to UC in April given the severity of my colon, however I had patches of inflammation around my ileocecal area, and a patch in the transvers colon. (I only had a chance to read the full report recently, which I got a copy of.) Based on these findings I don't know what the heck I've got. But the inflammation was so severe that I'm sure there is scarring now, or at least residual sensitivity.

Come June I figured out a diet that worked, and a probiotic regimen that rescued me. June 2015 had my first blood transfusion. Had the second in August. In September I got of all prednisone. Health is stable now, no flares or problems as long as I don't eat the wrong food.

Seeing my GI again this month. He may want to do a scope, which I will have to refuse because I'm not risking further irritation. My flare started after a scope. I don't trust their cleanliness and the biopsies they take injure the bowel further. What I need is long-term stable diet, probiotics, and a reduced stress lifestyle. The bowel will recover from all this trauma with time.

Bacon Girl said...
are you having any gi symptoms at all?? i only ask because i have IBS, SIBO and ileocecal valve syndrome. this is why my iron is low even though my UC is in remission. with SIBO, the bacteria in the small intestine use your nutrients for food instead of you absorbing them.

Hard to say. My ileocecal area didn't hurt until after my first scope, and didn't *really* start hurting until the flare began. I believe there is a relationship. However, upon reading up on the ileocecal valve, I don't think I have the syndrome you're talking about.

Years ago, after food poisoning which started my initial trend of chronic diarrhea, I thought I might have SIBO. Every time I took OTC probiotics it made my diarrhea worse. At that time I wasn't absorbing fat either. My stools really stank. I don't seem to have those problems now. My stools are the most formed they've been in 4 years and I seem to be fully absorbing. I can even eat cheese and dairy again, when I couldn't for the longest time.

Right now all I take is milk kefir, colostrum, he shou wu (fo ti), and elderberry immune tonic. My last blood test showed that my immune system is low, but that's probably because I didn't take enough vitamin C for over a month and I've been going to the gym a lot.

Dikid said...
Are you sure that your hemoglobin is in the hundreds? I am pretty sure that normal ranges are about 12-15
I also think that Iron levels are supposed to be higher like in the hundreds. Is it possible that you are mixing up the two...
as with ferratin mine is very low (its the stored iron in your body)
was 3 now its about 5.

Different systems of measurement. Under the system you're using, my hemoglobin is 11.8. As for the ferritin, one is measured in dL and another in L. The one I use is measured per L.
Posted 1/4/2016 12:30 PM (GMT 0)
Anemia is a side effect of uc, something a number of us suffer with. Are you often fatigued (a common side effect of anemia)? I'd try the iron infusions as they help. Some say the iron supplements are hard on the gut. Try eating as many iron rich foods as you can. Hang in there.
Posted 1/4/2016 2:01 PM (GMT 0)
so what are your current symptoms caused by the low iron ?
Posted 1/4/2016 4:32 PM (GMT 0)
Thanks everyone for taking the time to respond to me, I appreciate it.

I guess I'm just trying to understand the mechanism for the ongoing deficiency, is all. It says everywhere on the net that people with UC have problems absorbing iron but it doesn't say why. Iron is absorbed mostly in the duodenum (first part of the small intestine), and UC is all in the colon. So why does UC prevent iron absorption? The only thing I can come up with is that when the immune system is in attack mode, it halts iron absorption and most free iron gets converted to stored iron to prevent infectious bacteria from using it to get stronger.

My low iron symptoms are... low energy, fatigue, heart arrhythmia, thinning hair, paleness, brittle nails, out of breath sometimes, among other things. My hair is thicker now than in the summer but there are still patches missing.

I've been consuming a diet rich in iron since September but my blood values have not gone up one iota. I did just find out that you need to consume vitamin C with iron foods to make the best of it, but... aside from that, I just don't understand.
Posted 1/4/2016 5:20 PM (GMT 0)
You have lost a lot of blood and your iron stores are low
speak to any hematologist and they will tell you that it takes several months of taking the right type of iron and avoiding certain things when you take your iron

what sources are your iron? there is heme and non heme iron and those are absorbed differently,
are you eating red meat, chicken livers etc?
what iron supplement were you on?
Posted 1/4/2016 5:36 PM (GMT 0)
I tried a few supplements... mainly ferrous sulfate, but I also tried the newer ferric pyrophosphate. Neither really worked and they irritated my GI via constipation. I think my bowel tissues are still too fragile from the recent ordeal and I can't afford to really get constipated. I also read on pubmed and other sources that iron supplements can potentially damage good gut flora which is something I can't afford during this recovery period. The constipation re-opened anal fissures that were dormant for months, forcing me to start all over with healing my rectum. Really annoying.

Food wise... red meat, eggs, spinach, blackstrap molasses, canned clams, dark leafy greens. I get a mix of heme and non-heme iron in my diet. At the least the blood levels haven't dropped, meaning I'm not bleeding anymore. Combined with my low CRP and ESR my doctor's best guess is that I'm just not absorbing.

But maybe you're right, it's just that enough time hasn't passed.

I'm wondering though if iron injections or iron IV could irritate the bowel either way? I mean, if too much iron kills good bacteria and feeds the bad, then that's going to happen regardless of how I take the iron, no? Online literature seems to be ambiguous about this. Some sites say that even IV iron can cause bowel problems, while others claim it bypasses bowel problems. So I dunno. And then there's potential allergic reactions to IV iron, which would be a nightmare.

It would be so nice to have a more replenished iron supply though! I'm just trying to avoid more suffering here, heh.
Posted 1/4/2016 5:46 PM (GMT 0)
What was the dosage and frequency of the the ferrous sulphate?
Was it a slow release tablet?

Also, reading things on random sites does not mean it's legit.
There are even legit sites that have some bad articles.
Fact. Iron is important to produce hemoglobin to transfer oxygen via our blood.
Possible fact. Iron may mess with gut flora.

You have to weight the benefits and risks and credible vs maybe not such credible info.
Posted 1/4/2016 5:52 PM (GMT 0)
I think we should first determine if you are reading your blood test correctly. Your HGB levels are not making any sense. HGB is usually measured in g/dl. A normal range for a woman is 12-16 g/dl.

But HGB is not the whole story. You also need to look at your HCT and your HGB.

And what exactly is your iron level?
Ferritin is not an indicator of anemia and your levels are actually pretty decent. (mine usually hovers around 4 but women tend to have less...) Ferritin can tell you if you are headed down the road to anemia but is typically not used to say yes or no to whether someone is anemic. Ferritin is used up BEFORE your iron levels are tapped into. Think of it as your first line of defense. And yes, I do believe that some people are more comfortable not having huge storages of Ferritin. I run low but I think low is normal for me.

Either way, Anemia can make you feel like total crap. I had iron infusions for a couple of months. They were wonderful but not an overnight fix. My hematologist said I would be doing "cartwheels" after 2 months of them. I wasn't exactly doing cartwheels but just to exercise without fainting was divine.
Posted 1/4/2016 6:04 PM (GMT 0)
Here, I'll copy and paste the blood results, including the stated normal range. The "L" means low/abnormal.

Hemoglobin L 118
Reference range: 135 - 180

Hematocrit L 0.39
Reference range: 0.41 - 0.52
* On average this range for men should be near 45.

Ferritin: L 7
Reference range: > 14

I also just noticed that some of my immune cells are low:
Neutrophils L 1.1
Reference range: 2.0 - 8.0

My blood cell morphology like MCV and MHC are also low, but that's likely due to the anemia. I agree that some people have naturally low ferritin and transferritin, but in my case if those lows were my natural normal range, then why hasn't my hemoglobin gone up? Last year before my flare, my hemoglobin was 160.
Posted 1/4/2016 6:25 PM (GMT 0)
ok so your HGB must be measured in g/L not g/ml. So actually your HGB is 11.8 g/dl which is just shy of being normal (for a woman).Sorry...which are you? But still....these levels are not terrible. You are not going to get a blood transfusion any time soon.

Again, I do realize that anemia totally sucks. I think sometimes the anemia was just as bad as the UC. But the good news....it is fixable! And yours is not even that dire. I would be very very surprised if a few iron infusions didn't have you feeling much better. If they don't....then you can start worrying that your body is not absorbing iron.
Posted 1/4/2016 6:42 PM (GMT 0)

Chiron said...
... Iron is absorbed mostly in the duodenum (first part of the small intestine), and UC is all in the colon. So why does UC prevent iron absorption? The only thing I can come up with is that when the immune system is in attack mode, it halts iron absorption and most free iron gets converted to stored iron to prevent infectious bacteria from using it to get stronger. ...

I had not thought about this because I had ongoing bleeding with my anemia, but I think you are correct about the diversion to storage.

I read about Anemia in Chronic Disease (ACD) and this is talked about. See this figure www.ncbi.nlm.nih.gov/pmc/articles/PMC1774131/figure/f1/

Keep in mind that "absorption" of iron form the GI track and "utilization" of iron in the bloodstream are two different things. Your theory is about a failure of utilization.

The figure above come from: Gut. 2004 Aug; 53(8): 1190–1197.
doi: 10.1136/gut.2003.035758
PMCID: PMC1774131
Iron, anaemia, and inflammatory bowel diseases (www.ncbi.nlm.nih.gov/pmc/articles/PMC1774131/) which is 11 years old. There may be more recent information.

I would try an infusion. I would do the ferehame instead of the dextran drip. If the hemoglobin levels do not rise by 3 weeks post infusion, I would consult a hematologist.
Posted 1/4/2016 8:07 PM (GMT 0)
your hemoglobin and hematocrit is nothing to worry about
in fact some labs report normal levels for hemoglobin as 11.5-14.5 , they most likekly will not give you a blood transfusion and it is not even worth the minor risks assosiated with blood transfusions for your case.
right now you have enough hemaglobin
you want to concentrate on elevating your ferratin which are your iron stores
following or proceeding a bout of anemia it is common for ferratin to be low
and like stated its very common in females who are menstruating or pregnant or postpartum
ferratin will take a long time to build up, you can always see a hematologist who will advise you on the best way to overcome this

out of curiosity, what lab are you using, I have never seen labs reported in those terms (and if I remember correctly they reported your CRP in a funny was as well). It does not mean there is anything wrong with the labs I am just curious

did they test your actual iron, percent saturation, and binding capacity?
Posted 1/4/2016 11:32 PM (GMT 0)
I just read this:
https://en.wikipedia.org/wiki/Anemia_of_chronic_disease

So, even with parenteral iron (non-oral iron), your body may not utilize it in the presence of inflammation. And once again the nature of the inflammation either comes down to infectious vs. non-infectious. This is so frustrating. I wish modern medicine had more effective ways of figuring out if UC is caused by infection or not. Nobody in my family history has IBD whatsoever and I lived in Asia for a long time which is where my IBD really started. For all I know there's some kind of occult infection happening. But doctors tell me there isn't one, due to lack of evidence.

But now I am being led back to this data which shows the body doesn't utilize iron in the presence of an infection. Also, based on that Wiki entry, the body shifts priority to white blood cell production in inflammation, and stops producing as much RBC. But in my case, based on my blood labs, both are low, so I don't get it.

Though the article does say that I probably just have straight up iron deficiency anemia, by the numbers. I'm just concerned if I get an iron IV that my body might not even use the iron.

I know that in terms of normal range I'm not that far off, but my normal hemoglobin is in the 160s and I've been static around 120 since my last hemoglobin transfusion in August. I understand if ferritin has not gone up but why has hemoglobin not gone up??

Maybe I still have hidden inflammation. It's the only explanation for why hemoglobin isn't changing... the bone marrow isn't releasing as much RBC.
✚ New Topic ✚ Reply