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Old 02-12-2010, 09:14 AM   #1
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Low Iron & Ferritin - what to do???

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!

 
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Old 02-17-2010, 08:19 AM   #2
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Re: Low Iron & Ferritin - what to do???

Hi Numpy,

I look forward to reading the responses you get, I am another one with a low ferritin level of 5, had endoscopy - all clear, am awaiting a colonoscopy on the 1st March, your post has made me wonder if that comes back all clear as well, what next to try and find out why ferritin levels are so low and does it really matter if you're feeling good!?

Sue

 
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Old 02-17-2010, 08:29 AM   #3
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Re: Low Iron & Ferritin - what to do???

I guess with all the gastro. testing you have had done, your stool has been checked for blood and there is indeed blood in it? You definately have a GI bleed?

Nexium or any of those types of medication can cause you not to absorb your vitamins/minerals the way they should be absorbed. Not sure if some are worse than others.

Do you still have monthly cycles? How are they? Heavy? This is the cause of my anemia and low ferritin. My ferritin was a 2 and my hemoglobin was a 9.5 (if I recall correctly). Your hemoglobin is not that low, but you should certainly take some iron supplementation and try to get the numbers up.

 
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Old 02-18-2010, 07:12 AM   #4
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Re: Low Iron & Ferritin - what to do???

Heya Numpy, I myself have been struggling with anemia. It can really suck. First I will say that if you have only had a diagnosis and a rapid decline, do what you can to find the source. As long as you can afford it, request that an anemic workup be done. I can afford it, but I've had most tests performed and my doc refuses the bone marrow tests. So they all stick with the "o just take this pill" approach.

If you have other issues, anemia could be a symptom. keep an eye on your health. I can attest to the fact that it really sucks to have this. I am awaiting a doc appt now because I'm out of pills. I plan on requesting IV infusions. Lately, my memory is pretty much shot. I can not focus, I can't sleep, I have no energy, I can't remember, and o ya... I can't type worth a crap anymore. My letters come out but mixed up. I have to retype things many times. I also feel some depression setting in, thoughts of hurting myself that I can't talk to anyone about. But I know are wrong and due to my mental state. Feeling removed from my body, losing control.

I am not too worried since my appt is in a week. Sure, they'll fix me up all over again. I feel like the tin man just needing a new oil can. =)

Anyways, enough about me. Good luck and keep us all posted.

 
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Old 02-22-2010, 07:19 AM   #5
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Re: Low Iron & Ferritin - what to do???

I don't have a contact to help you with. There are many doctor boards where actual doctors can generically answer your questions. I would have to look aagain and see if i can find any good ones for you. I like posting here because I get to vent that many doctors have differing opinions.

Also, I've been told that I have to take iron the rest of my life so i cant say taking prolonged doses of the stuff is that harmful. Stay with it though. Your life is in your hands. Good luck

 
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Old 02-22-2010, 04:17 PM   #6
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Re: Low Iron & Ferritin - what to do???

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!!

 
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Old 02-27-2010, 07:40 AM   #7
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Re: Low Iron & Ferritin - what to do???

Hi all,
I went back and read everything again and wanted to post....

I DO still have my periods every month. They are not bad right now; last year they were pretty heavy at least every other month, but not bad at all now.

I am taking Nexium (40 mg) daily and have for years so I wonder if that's at least some of the cause of my not being able to absorb iron. When I talked to my gastro doc about this, he didn't seem all that convinced about it. I also asked him if he could check my thyroid since my iron isn't THAT bad (11.4 if I remember correctly), my ferritin levels are just pretty low (3) and I have heard that when something is going on with your thyroid that it can mess up your ferritin levels. He said he would check my thyroid next time I get my blood testing done which is mid-March.

On Monday, March 1st, I do go for the camera/capsule test after my insurance company finally approved it! It took alot of hassle for them to finally approve this test, so I'm really relieved that I can get this done. Has anyone had this test done? Wondering what to expect and what your results were. My doc said that I might have blood vessels that pop and bleed randomly and that could be causing my low(er) iron and ferritin. Have you heard of this?

I also had a question for all of you out there--are you FREEZING all the time? I am so cold that the minute I get home, if I can, I get in my pj's, socks and robe (all fleece!). I wear a sweater and jean jacket all day at work and sit with a portable heater by me and at night I sleep with a heating pad that shuts down automatically every so often and since I don't sleep well AT ALL, I wake up and turn it on all the time!! LOL!

I am also concerned about losing my hair! I know people have posted that their low ferritin has caused hair loss and that freaks me out! My hair is dry lately, but so far it looks like I'm keeping it all.

Gosh, I am sorry that all my posts are like a novel. I just have so many questions about this and thank all of you that are willing to share your journey. I probably didn't ask all the questions I wanted to when I read thru your posts so I may be back again with more questions!!

Take care and thanks again!

 
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Old 03-04-2010, 05:14 AM   #8
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Re: Low Iron & Ferritin - what to do???

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

 
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Old 03-04-2010, 02:12 PM   #9
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Re: Low Iron & Ferritin - what to do???

Quote:
Originally Posted by sue46 View Post
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
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

 
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Old 03-06-2010, 03:18 PM   #10
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Re: Low Iron & Ferritin - what to do???

Hi Wendy, good to hear that all kind of went with the camera! no I am not scheduled for one, I am not willing to be fiddled around any more with at the moment when I feel so well.. will let you know how I get on with the follow up to the endoscopy/colonoscopy, which all came back normal.

Look forward to hearing your results with the camera, so clever these days!

Sue

 
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Old 03-15-2010, 01:19 PM   #11
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Re: Low Iron & Ferritin - what to do???

I had the capsule test performed last year. I was pretty nervous that the capsule would not come out, but it did within 35 hours. My results came back normal and nothing unusual was spotted. Like you, I thought the swalowing portion of the capsule went very smoothly.

 
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Old 03-15-2010, 05:15 PM   #12
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Re: Low Iron & Ferritin - what to do???

Taking 40mg of Nexium per day could result in reduced iron absorbsion.

It might be possible to take the iron with a hydrocohloric acid suplement (betaine hcl or others) depending on why you're taing the Nexium - definatly somthing to ask your doctor about.

Taking a vitamin c tablet or a glass of orange juice with your iron pill can also help boost absorbsion - again - ask your doctor what s/he thinks

 
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Old 03-17-2010, 07:03 PM   #13
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Re: Low Iron & Ferritin - what to do???

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

 
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Old 03-18-2010, 01:23 AM   #14
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Re: Low Iron & Ferritin - what to do???

I would def try taking your iron with some orange juice.

There is quite a lot of infomation out there about PPI's such as nexium and iron deficiency - . That doesnt mean you have to stop the nexium, it just means it might take a bit longer for your numbers to come up.

Also, if you keep taking nexium long term, taking a daily Centrum tablet would be a good idea, as insurance.

Last edited by Administrator; 03-18-2010 at 01:26 AM.

 
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Old 03-18-2010, 01:48 AM   #15
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Re: Low Iron & Ferritin - what to do???

Quote:
Originally Posted by Numpy View Post
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

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

 
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