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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!
Thanks to everyone for the responses. I'm going to have to go thru and re-read them all again S-L-O-W-L-Y because it is so much to digest!! Really, I can't thank you all enough for the many and varied responses!!

I just wanted to clear something up, tho--I don't have a GI bleed (and never have--my post was so long it might have been confusing!). Hopefully they will be able to get to the bottom of why my iron and ferritin levels are dropping even tho I'm on 3 iron pills/day.

It is so nice to know that there are others in this same situation and that we can share info/ideas with one another. I'm going back to re-read the info and will post again if I have questions!!
[QUOTE=sue46;4197458]Hi Numpy,

How did the camera test go? my doctor muttered something to me about maybe that will be the next route to go down about my low ferritin levels.

Sue[/QUOTE]

Hey, Sue-
I haven't gotten the test results yet; they said it can be up to 2 weeks before I get them. :( Swallowing the camera capsule was a piece of cake, felt nothing with it was capturing the images, but unfortunately I got a faulty transmitter machine that they strap to you (or whatever it is called that captures the images). I swallowed the camera at 7am and went home for the day because I didn't sleep well the night before (my prep didn't "kick" in until 1:30am, if you know what I mean, so I DIDN'T sleep and my stomach was still going crazy all day!). So, long story short, had to check the transmitter every 15 minutes to make sure the blue light was blinking (blue light showed me that the camera was moving along capturing the images) and be back at the doc's office at 3pm to turn back in the transmitter machine. Well, at 1pm I looked at the transmitter and NO lights were blinking!! Of course I freaked out, called the doc's office and the lady was like, "ummm, can you come in right now?" I asked her if the batteries had died and she said it sounds like it. I was NOT happy because I had gone thru so much to have my insurance company cover this and I HATE the prep you have to go thru for it. Same as what is needed for a colonoscopy and if you've ever had that you know EXACTLY what I'm talking about!! LOL! After being kind of scared that it might not have worked enough for it to capture all the necessary images, I found out yesterday that the camera did make it thru my small bowel and that's all it needed to get thru to get the images the doc needs to see. Yay! Now it's just the waiting game......

Thanks for asking! Are you scheduled for one?

Also, for anyone else that has had the test: what kind of results did you have from the capsule endoscopy??

Again, thanks in advance for any info!

-Wendy
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=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
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! :)
[QUOTE=niknak71;4221463]Hi, I know exactly how you feel. I had a blood test in January because I was just feeling so lethargic and hair was thinning quite badly. Bloods came back with ferritin of 4, serum iron, 6 and hemoglobin 11.3. Started iron tabs on 26 Jan and meanwhile took organic blackstrap mollases and ate an iron-rich diet, lots of liver, and i got a tincture called yellow dock which is supposed to really increase ferritin. Had bloods done yesterday and my ferritin is 23, serum iron 16.7 and hemoglobin 13.2 so now all normal apart from ferritin which will hopefully improve even more over the coming months. Hope this helps[/QUOTE]

Maybe I should try the molasses--I've never heard of yellow dock. I'll have to check that out. It sure seems like your levels came up quickly!! Well, lots more quickly than mine. I'm taking three "super" iron pills/day. Bifera is the name of the iron pill--it's supposed to be as powerful as a transfusion when you take one/day and I'm taking 3 of these pills a day and my levels haven't gone up like yours did! Niknak71--how much molasses did you take and was it everyday? I'm willing to try anything safe and natural that won't harm me to try and get my levels up! My hair is thinning and I just want to feel like the old Wendy! Thanks for the info!
Well, I had my blood tested again a couple of weeks ago and finally got the results today and I'm not encouraged at all. :( My iron is 12.6 and my ferritin stayed a 6 and this is after taking 3 of the "super" iron pills/day (Bifera). These pills are supposed to be the equivalent of transfusions and people normally respond when taking one pill/day. I just don't understand why nothing is changing for me. I honestly thought my levels would have soared by now!!

My gastro doc isn't concerned at all, which really ticked me off!! I want to know WHY this is happening. Where is the blood going? Why am I losing it?? The nurse said the doc thinks it's because of my monthly period that this is happening and my OB/GNY doc said no, she doesn't think so..... She encouraged me to go to a hematologist to get to the bottom of this, the cardiologist I saw early April told me to see one and my GP doc told me I need to see one, too, so I am finally taking their advice. I asked the nurse if my gastro doc would give me a referral to a hematologist and she said she would check with him and let me know but she didn't think it would be a problem. It better NOT be!! I'm tired of dealing with this!

Sorry to vent--I'n sure others have been in this situation. I just wonder why a doctor wouldn't want to get to the bottom of it! I know my iron isn't really that bad, but my ferritin IS and I'm starting to really see the results. My hair is getting pretty thin in places.

For those of you that have seen a hematologist, please tell me they were finally able to get the answers you needed?!? That's my prayer--that someone can figure this out and get me back to normal.

-Wendy
[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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