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Hi everyone,
I'm new to this board having only "lurked" a couple of days now!

This is my story and I'm looking for ideas on how to proceed. Any info you can give me will much MUCH appreciated! Sorry, I think this might be long!!

I have had low iron for about a year now. I thought nothing of it when my gastro doctor first discovered it. Didn't worry me a bit. I have UC for probably about 25 years but haven't had a flare for 10+ years and take Asacol for the UC. I also have GERD and take 40 mg. Nexium daily for that. So, last year I went for my yearly colonoscopy and doc visit for the UC. The colonoscopy was great; the doc said that if they didn't know I had UC that it that they would never know it. Great news there. Doc said I was low on iron (didn't even ask for the numbers) and to take a iron pill every day. I was not good about doing that.

Fast forward to this last fall. Went again for my yearly check-up with the gastro doc and the bloodwork was repeated. This time I found out the numbers. My iron was 11.7 and my ferritin level was a 5 (this was in December). My doctor suggested I start taking 2 iron pills daily (Bifera--I believe it's fairly new but supposed to be really good) and that he would recheck at the end of January. Started taking my 2 Bifera pills/day and had teh recheck at the beginning of February. Both the iron and ferritin levels had dropped even more which is crazy to me! Iron now at 11.4 and ferritin at a 3.

Oh, and I did have another colonoscopy and also had an endoscopy and lower bowel x-ray in November and December to see if I had bleeding there and everything came back great! I am going to have one of those capsule camera tests (they're scheduling it soon). The only other thing I can think of that might cause the bleeding they're looking for is that I take Vicodin (not every day, but regularly for sciatic trouble because I can't take Advil/Motrin because of the UC). Wondering if that had caused an GI bleed?? Oh my!!! I really am not a mess, I promise!! Other than feeling a little tired at times, I think I'm doing fine. I am really active (but slightly overweight -haha!- 41 year old wife and mother) with my kids (16 and 21). I honestly don't feel exhausted all the time but I have ZERO energy or motivation to exercise as I have in the past. Sometimes my kids tease me about my memory (they said they've told me things and I really don't remember or when they tell me again it triggers my memory), but after reading these boards kind of scares me! I am not having hair loss and am not completely exhausted all the time. Oh, and I found out that my Vitamin D is low as well. Don't have the numbers for that.

So, now knowing all that (probably more than you wanted to know!)--I'm looking for some info. I've read that Nexium can have something to do with low iron/ferritin? Was I reading that correctly? If that is true, would switching my GERD medicine to something else help? Would you suggest I ask my Gastro doc for a referral to a hemotologist? I am asking this because until I heard that I had to do the lower bowel x-ray and the capsule/camera test, I really didn't think too much about low iron. Now I'm starting to get worried and that is an understatement!!

Thanks in advance to all the wonderful people out here in the message board!
[QUOTE=Numpy;4206238]Thanks so much for the info. Got my bloodwork results from last week and my iron went up to 29 (from 11.4), but my ferritin levels only went up to 6.1 (from 3). This is with me taking 3 Bifera tablets daily. Does anyone else take Bifera? It's supposed to be the new "super" iron pill.

When my doc called me today with the results I asked him if me taking 40 mg. Nexium daily for years now could/would affect the way my body is storing iron and he said he didn't think so. He did give some reason why he didn't think so, it was something to do with how the Bifera pill works. They didn't find anything in my colonoscopy, upper GI, capsule endoscopy or lower bowel x-ray. Can't find anywhere that I may be bleeding. I reminded him again today that I was taking 3 Bifera pills/day and he was like, "hmmmm, I just don't know why your ferritin levels would remain so low like that; I'm going to talk with another doctor about this and call you back". He did say that maybe I have some blood vessels that randomly burst and cause bleeding??? Does anyone else have that problem? I am so confused and don't know what to think. He also asked again if my monthly cycles were heavy (and they're not), so I feel like they're trying to come up with a reason and I'm not fitting the "norm". Am I the only one out there like this or does anyone else have unexplained low ferritin even after taking LOTS of iron daily?? Does anyone else have any ideas what else it may be and I can ask my doctor about it? Do you think I should ask to be referred to an internist or hematologist??

Any help/info/ideas you can give me will be MUCH appreciated!

-Wendy[/QUOTE]


hmmm interesting Wendy! I am following your story closely as I can it mirroring my own state of affairs..

Why did they give you the blood test in the first place that alerted them to a low ferritin level?

Sue
[QUOTE=Numpy;4210939]

Also, does anyone have any ideas on where else I could be bleeding that they haven't checked? Do you think I should go see a hematologist to get to the bottom of this or should I just listen to my doctor and not worry about it? I am so confused!!!

Again, thanks in advance for any info you give me. You don't know how much it means to me!!

-Wendy :)[/QUOTE]

Wendy, I am in the same health position as you and I have been seeing a Hematologist for 3 years now. If you decide to go to a hematologist, I would suggest that you not get your hopes up too high for better results. My doctor is still circling the same tests and can not figure out why my ferritin level continues to drop.
[QUOTE=Numpy;4184268]Hi everyone,
I'm new to this board having only "lurked" a couple of days now!

This is my story and I'm looking for ideas on how to proceed. Any info you can give me will much MUCH appreciated! Sorry, I think this might be long!!

I have had low iron for about a year now. I thought nothing of it when my gastro doctor first discovered it. Didn't worry me a bit. I have UC for probably about 25 years but haven't had a flare for 10+ years and take Asacol for the UC. I also have GERD and take 40 mg. Nexium daily for that. So, last year I went for my yearly colonoscopy and doc visit for the UC. The colonoscopy was great; the doc said that if they didn't know I had UC that it that they would never know it. Great news there. Doc said I was low on iron (didn't even ask for the numbers) and to take a iron pill every day. I was not good about doing that.

Fast forward to this last fall. Went again for my yearly check-up with the gastro doc and the bloodwork was repeated. This time I found out the numbers. My iron was 11.7 and my ferritin level was a 5 (this was in December). My doctor suggested I start taking 2 iron pills daily (Bifera--I believe it's fairly new but supposed to be really good) and that he would recheck at the end of January. Started taking my 2 Bifera pills/day and had teh recheck at the beginning of February. Both the iron and ferritin levels had dropped even more which is crazy to me! Iron now at 11.4 and ferritin at a 3.

Oh, and I did have another colonoscopy and also had an endoscopy and lower bowel x-ray in November and December to see if I had bleeding there and everything came back great! I am going to have one of those capsule camera tests (they're scheduling it soon). The only other thing I can think of that might cause the bleeding they're looking for is that I take Vicodin (not every day, but regularly for sciatic trouble because I can't take Advil/Motrin because of the UC). Wondering if that had caused an GI bleed?? Oh my!!! I really am not a mess, I promise!! Other than feeling a little tired at times, I think I'm doing fine. I am really active (but slightly overweight -haha!- 41 year old wife and mother) with my kids (16 and 21). I honestly don't feel exhausted all the time but I have ZERO energy or motivation to exercise as I have in the past. Sometimes my kids tease me about my memory (they said they've told me things and I really don't remember or when they tell me again it triggers my memory), but after reading these boards kind of scares me! I am not having hair loss and am not completely exhausted all the time. Oh, and I found out that my Vitamin D is low as well. Don't have the numbers for that.

So, now knowing all that (probably more than you wanted to know!)--I'm looking for some info. I've read that Nexium can have something to do with low iron/ferritin? Was I reading that correctly? If that is true, would switching my GERD medicine to something else help? Would you suggest I ask my Gastro doc for a referral to a hemotologist? I am asking this because until I heard that I had to do the lower bowel x-ray and the capsule/camera test, I really didn't think too much about low iron. Now I'm starting to get worried and that is an understatement!!

Thanks in advance to all the wonderful people out here in the message board![/QUOTE]
My iron and ferritin are low as well. There doesn't seem to be any reason for it. I was diagnosed with Thalassemia 5 years ago and my red blood cell and iron only go low when I get a virus and get run down. I don't know what to do either. I am very frustrated and very very tired.
[QUOTE=skibunny1975;4313920]I had horribly low iron and ferritin levels after getting pregnant 8 years ago. When I was pregnant I had an iron level of 7 and they thought they were going to have to do a blood transfusion. Ever since my two pregnancies I have had low iron. Now my low iron is due heavy periods, differenent than your problem. However, my solution may help you. After years of struggling and considering having an uterine ablation I found some great iron and finally after years I am now stable, iron at 13 and ferritin at 12. I take iron that has liver fractions in it, I get if from a holistic doctor but I have heard they also can be purchased online. It's called integrative therapeutics, inc., iron complex. They are about $25 for 90 softgels but worth it. Not all supplements are created equal. Good Luck!!

FYI: They told me that my ferritin shouldn't get below 9 or I may have to get a transfusion. Double Check that your ferritin levels aren't too low, it can be very dangerous to have extremly low iron and ferritin levels.

Laura[/QUOTE]

Thanks for the info! Very helpful--I'm going to have to check into that. I'm waiting to hear my "numbers" in September. Hopefully they've gone up. I know my ferritin has been as low as 3, but my iron is usually between a 9, 10 or 11. I just can't wait for this to be over! Today I came home completely exhausted (doesn't help that work is kicking my butt last week and this week! haha!) and slept for a couple of hours. I really HATE to do that, but feel like I need to get my sleep when I can because sometimes I can't sleep at night at all! :(

Anyway, thanks for the info--everyone one these message boards are just great!
Wendy, I wanted to warn you about something: taking proton pump inhibitors( acid blockers) like Zantac, Prilosec, Acifex,etc can make your body unable to absorb oral iron! This happened to me: I was taking Acifex for GERD, and having extremely heavy periods and the combination caused my Hgb to drop to 4 which is almost incompatible with life! I had 3 transfusions and many many IV iron infusions to get me to healthy level. Currently I see my hematologist every 3-6 months for monitoring and go in for the IV iron whenever I drop my Hgb below 10.





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