Low Ferritin

Fire_Ice
on 7/18/19 4:23 pm
DS on 10/25/17

It is fairly common with our procedure to have a low ferritin number, correct? My hematologist just retested me (four/five months after my last infusion) and I'm down at a 3 again for ferritin. Now he thinks I need a colonoscopy because I must have a tumor or something that explains my inability to hold on to iron.

So I'm freaking out a little (just hung up the phone). I told him I have been seeing a colorectal doctor regularly because I have anal fissures (created by carrying extremely large babies) that flared up a few months after I had my DS. My colorectal doctor said my fissures are healed up (she checked them yesterday) and I'm doing well. She credits the earlier iron infusions with fixing the fissures.

But if this is just something that some DS patients have to deal with, I could use that reassurance now. I'm happy to go in and get my iron infusions. But now I'm slightly terrified that I might have colon cancer and would have no way to tell if I'm even having symptoms since the DS and the foods I eat have an effect on my bowel movements (the primary symptom, apparently).

hollykim
on 7/19/19 4:53 am - Nashville, TN
Revision on 03/18/15 with
On July 18, 2019 at 11:23 PM Pacific Time, Fire_Ice wrote:

It is fairly common with our procedure to have a low ferritin number, correct? My hematologist just retested me (four/five months after my last infusion) and I'm down at a 3 again for ferritin. Now he thinks I need a colonoscopy because I must have a tumor or something that explains my inability to hold on to iron.

So I'm freaking out a little (just hung up the phone). I told him I have been seeing a colorectal doctor regularly because I have anal fissures (created by carrying extremely large babies) that flared up a few months after I had my DS. My colorectal doctor said my fissures are healed up (she checked them yesterday) and I'm doing well. She credits the earlier iron infusions with fixing the fissures.

But if this is just something that some DS patients have to deal with, I could use that reassurance now. I'm happy to go in and get my iron infusions. But now I'm slightly terrified that I might have colon cancer and would have no way to tell if I'm even having symptoms since the DS and the foods I eat have an effect on my bowel movements (the primary symptom, apparently).

it is not unusual for us to be unable to absorb enough iron for our ferritin to stay up. Ferritin levels indicate the amount of iron we have in "storage" for the body to draw from when it is needed.

Since we can't absorb a lot anymore, our bodies draw often from the storage which makes the ferritin go down.

You may have a tumor but I would bet that you don't. Just normal , for having a DS, issues with iron.

I have had three sets of iron infusions in the 9 years since my WLS.

 


          

 

Eliza970
on 7/19/19 7:31 am

It is true we have an impaired ability to absorb iron. After having infusions every year or so starting about 5 years into my DS life, I have not needed an infusion for 2 years now because I changed the type of iron I take, heme iron (Proferrin), take it with vitamin C on an empty stomach, and do not take it with copper, calcium, zinc, or milk products. My last ferritin test was normal. In my low-ferritin years, I was advised to get a colonoscopy to rule out colon cancer, and it was completely normal. My obese sister currently has stage 4 colon cancer. The doc said losing large amounts of weight is protective for colon cancer and he felt I was now at low risk, despite my family history. Visible blood in the stool or black tar-like poop are more obvious symptoms of colon cancer, more than diarrhea or constipation.

Fire_Ice
on 7/19/19 10:28 pm
DS on 10/25/17

What dosages do you take of the C and Proferrin?

And thanks for the info on symptomatic bowel movements. I'm definitely not having those.

Eliza970
on 7/20/19 6:44 am

The vitamin C is 500 mg. The proferrin is 10.5 mg per tablet. Expensive, but it worked for me.

chevtow41
on 7/21/19 3:00 pm
DS on 11/11/14

Not necessary to separate Heme iron from food or vitamins

Laura in Texas
on 7/21/19 6:42 am
RNY on 09/17/08 with

I think the low ferritin is typical, but I think you should still get the colonoscopy. If you get a clean bill of health there you probably won't need another one for 5 years.

Laura in Texas

53 years old; 5'7" tall; HW: 339 (BMI=53); GW: 140 CW: 167 (BMI=26)

RNY: 09-17-08 Dr. Garth Davis

brachioplasty: 12-18-09 Dr. Wainwright; lbl/bl: 06-28-11 Dr. LoMonaco

"If what you're doing doesn't work, change what you're doing - don't complain that it doesn't work."

Janet P.
on 7/22/19 10:46 am

Once you've confirmed you are not bleeding internally, you might want to look into Injectafer.

I've had issues with anemia since I had the DS (16+ years) and have tried a number of different infusion drugs. The last one was Injectafer at the recommendation of my hematologist. It has kept my numbers over 200 for almost 2 years. It was designed specifically for people who don't absorb oral iron.

Hope you find some relief.

Janet in Leesburg
DS 2/25/03
Hazem Elariny
-175

Fire_Ice
on 7/23/19 12:38 pm
DS on 10/25/17

I've had four Injectafer injections so far. ? They don't seem to work as well for me.

animallover1247
on 7/22/19 5:13 pm

Could you please tell me what level your ferritin was at when you needed an iron transfusion? Thanks

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