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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!
First, thanks again to those of you who responded! I believe what you're saying about the Nexium but for some reason can NOT get my gastro doc to buy into it. I asked him if I could try reducing my Nexium to one pill every other day to see if that would help with my ferritin levels and he didn't have a problem with that, so I'm going to try that and see what happens when I get my bloodwork done again at the end of April.

I told him that I am taking my iron pills with orange juice and he said with the Bifera tablets, it probably doesn't matter if I do that or not because of the way these pills work. This is what I've found out about Bifera (copied and pasted info from their site):

[I]Unlike all other over-the-counter iron supplements that only include non-heme iron, Bifera includes heme iron, the natural carrier of iron found in red meat. Recent studies show the heme iron found in Bifera offers 25 times greater absorption than other iron supplements. Due to its highly-efficient absorption, heme iron is generally free of the side-effects, including stomach irritation and constipation, commonly found with conventional iron supplement products. As a result, the iron supplement Bifera can be taken with or without food and does not need to be taken with Vitamin C.[/I]

Also says that it has 25 times greater absorption than other over the counter iron supplements, potentially as effective as intravenous iron. (But that this statement hasn't been evaluated by the Food and Drug Administration. I got this info from a flyer from the doctor.

NOW....with that info, doesn't it seem like my iron and ferritin levels would soar after taking 2 of these pills daily for a month and then 3 pills daily for the next month? Again, my iron went from 11.4 to a 28 (I thought it was 29 as I reported earlier) and my ferritin levels only went from 3 to 6.1. Did it take awhile for all of you to have your iron and ferritin levels reach normal levels? I AM concerned about this, but all the gastro tests I've had come back normal (for which I'm TRULY thankful, but still don't know why my levels are not good). I guess I'm especially concerned with my ferritin levels since I now can see that my hair is MUCH thinner that it used to be and as a woman, I want to keep the hair I have!! :D And then of course my energy levels are low, and I don't want to be like this.

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

PS: Sue, are we still very similar in our experiences with what I've typed above? If we are, it's nice to know that there is someone else out there like me! :)
Well, I got the phone call from the doc's office yesterday. Ferritin levels have dropped AGAIN, so they're going to start me on Venofer IV infusions. Once a week for 5 weeks. Anyone out there had good results with this type of infusion raising the ferritin levels quickly?

I'm hoping that with the switch to Zantac (from Nexium), taking 1000mg of B12 daily, a multi vitamin and Vitamin D AND these new iron infusions that this will conquer my iron deficiency anemia. Has anyone out there ever gotten rid of anemia once and for all??? If so, does it take YEARS for everything to go back to normal? I'm beginning to think this is starting to take over my life! I'm freezing, have no energy and think about sleeping ALL the time, but I never do... Too much to do.

Also, are there any strange side effects I should expect from these types of infusions? Guess I'd better get reading the boards again.
[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.





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