Ferritin update

Sigh...Still trying to get my Ferritin up to a decent level.  Post op it was 150 and over the first 2 1/2 years it dropped to 5!   I didn't realize it was dropping because I wasn't comparing it to previous results.  I just made sure it was in "normal" range.  So even when it hit 24 I didn't realize I was in trouble.   I've learned my lesson and now have an excel spreadsheet with my labs charted and plotted on graphs - this has been very eye-opening.

So...I've been taking Proferrin twice a day and 50 mg carbonyl iron 3 times a day for about a year .  The 6 months before that I was only taking Proferrin once a day and 50 mg carbonyl iron once a day.  Before you ask, yes, I take my carbonyl iron with vitamin C and separate from everything else with only a bite of fruit - no dairy, caffeine, wheat, etc.

The Proferrin and Carbonyl iron have only brought my Ferritin up to 13  

Up 8 stinkin' lousy points!!! - in 18 months.   I'm frustrated and tired of being tired and tire of the hair loss.  I fall asleep at my desk all the time, need a nap every day (NEVER needed naps before in my life!) and I will be bald in another year or 2 if I don't get this fixed.  Seriously - it's bad!

I have an appt with a hematologist on 7/8.  Hoping he will do an iron infusion but I'm guessing he'll probably tell me to try another oral regime first - let that fail and then when I'm crawling back to his office he might agree to an infusion.  Hate to be so pessimistic but our healthcare community (myself excluded of course ) has no clue when it comes to bariatric needs and fixing deficiencies so I'm expecting a fight.

I just wanted to vent, share my story, and make sure that you all keep track of your labs closely.  "In normal range" isn't always normal for us!

Bekah

Yea, I'm fighting with mine too. I also have an appointment next week with a new Internist and I also want an iron infusion.  He probably won't do it either, but we shall see.

I hope you get your iron infusions. When I was newly post-op, my PCP found that I was iron deficient and ordered 4 weeks of iron infusions. When the increase was only modest, he ordered four weeks of Procrit, to stimulate the bone marrow to produce more RBC's. Seemed to take care of the problem. It will be interesting to see what my one year labs are in, when they are checked in August.

I am so sorry that you are suffering like this. Fatigue and hair loss are not any fun to deal with.  I hope your physician listens to you.

Gail

Thanks Gail, I hope so too.   The problem is that I'm not technically anemic yet - my hemoglobin, hematocrit, RBC's, etc. are all normal.  I just have no iron stores so it's only a matter of time before the anemia shows up.

I'm just hoping they will treat me now so it doesn't get to that point...

Swinging lizards you get your infusion. 150mg of carbonyl + 24mg of heme iron (all elemental iron) should have done something. Maybe your ferritin was just too darn low to fix with supplements. Don't let them give you the run around with sulfate crap. Good luck!

--gina
 

I'm just concerned that since it is technically in "normal range" at 13 that they won't do anything.   Although I don't understand why anything under 40 is considered normal but I'll have to battle that elsewhere I suppose...

 My Ferritin was 7 and my iron levels were normal and my doctor ordered an iron infusion.  I had that about 1 1/2 years ago and my Ferritin level was over 200 at my last labs.  It was starting to trend down, though, so I added more iron.  I get my labs done again next month and I'll see where it is at then.

I read somewhere you can take up to 300 mg of the carbonyl. I don't know if that's all at once though.

My ferritin always hovers at the low end of the range. It doesn't go down but it doesn't go up either. So I've started taking the proferrin. I'm taking the carbonyl too but only because I won a 3 month supply so I figured "why not?"

Yeah, the 50mg of carbonyl is just about nothing. If you'd bee taking say, 150 and then proferrin, that'd be a fair trial. But now, 50 just isn't much. Tape the medical books shut and think malabsorption.

So, if it was ME, I'd be taking 300 mg Tenders w/C. I DO take that much, but do every day anyway. My iron holds steady around 90, ferritin 200-300 for over a decade. The last was 502, but freak thing. Was just dx with RA and inflammation was rampant in hands and feet, hence the silly ferritin level. Not real, when compared to the steadiness of the last few years.

You mean 150 carbonyl 3 times day?  Or daily?   Currently I'm taking the 50 mg 3 times a day = 150 mg daily.