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  • Low Iron & Ferritin - what to do???

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    Old 07-25-2010, 07:13 PM   #61
    Numpy
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    Re: Low Iron & Ferritin - what to do???

    Quote:
    Originally Posted by katerina1 View Post
    Hi Numpy,

    Welcome to the helpful world here! talking to others really can help.
    Somewhere on here is a post that I made regarding nexium, anemia and low iron.....
    Your story reminds me of mine a little, hence the reply. I have had GORD for over 5 years now and am waiting on an op for it ---- also take Nexium 40mg daily like you, and like you my iron has fallen through the floor. Some medics arent aware that PPIs like nexium do cause malabsorption of iron, and often folks assume you are anemic cos you have a bleed somewhere. Thats not always the case.
    Dont know what iron you have tried, but the syrup form like Sytron is gentle on the stomach. I have been referred for iron infusions - waiting for the letter now to see if they will do it --- ask your GP for advice. They do say that they are worth a try! Dont stop asking for help. If you increase your vitamin C when eating iron rich foods that may help you absorb it. If I come up with any ideas I will post them here for you.

    Good luck Katerina :-)
    Thanks for all your positive infor and encouragement, Katerina! I feel like I am definitely on the right track with these iron infusions! Finally!! Althought, I did get a call from my gastro doctor that said the hematologist wants me to go for one more upper GI scope to see if there is any bleeding there they may have missed. I am really getting sick of these tests, but I DO want to get to the bottom of this, so of course I will do whatever they say. I also have some inflammation somewhere in my body and that confuses them, too. If I don't do well with this iron infusion stuff, I guess the next step is to look into my bone marrow. I'm just claiming that this will work and I won't have to have any more tests!! Keeping a positive outlook!!

     
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    Old 07-25-2010, 07:15 PM   #62
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    Re: Low Iron & Ferritin - what to do???

    Quote:
    Originally Posted by happyfeet77 View Post
    I am new here (been lurking for a couple of weeks) but just wanted to offer hope to people thinking about getting an iron infusion -- they are wonderful! I've read of some people having reactions but with a test dose and caring, careful staff you should be in good hands.

    A little about me:

    I've had chronic anemia for years -- had two infusions about 6 years ago. My ferritin went from a 2.7 up into the 150's. I should have had more infusions before now, but I'm having an infusion on Monday and I'm so glad! My ferritin is currently a 4. Saturation is 6%. Hemoglobin is low too, but I forget the number.

    I also have low calcium and magnesium issues but I have to take pills each day for that. I was so concerned for the past two years about the low calcium issues that I didn't keep up on the iron problems.

    No specialists have been able to figure out why I don't absorb iron, calcium, etc. No bowel problems, no internal bleeding issues, no gyn problems. It's a medical mystery. The anemia may run in the family on my mom's side but nobody else has the major calcium issues.

    I felt like a rock star after the last infusions....so here's hoping monday goes well! I will be having Infed since that's what I had before and I didn't have a reaction then.

    I'm glad to have found this group!
    Your situation is very interesting to me and I'm glad you posted. I am so hoping that the Nexium is the cause of all of this iron troubles for me and once I get all 5 iron infusions and am off Nexium and on Zantac for awhile it's all going to clear up and I'll be back to normal! Thanks so much for posting!!! I really appreciate you sharing your info with us!

     
    Old 07-28-2010, 11:17 AM   #63
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    Re: Low Iron & Ferritin - what to do???

    Quote:
    Originally Posted by Numpy View Post
    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!
    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.

     
    Old 07-28-2010, 04:15 PM   #64
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    Re: Low Iron & Ferritin - what to do???

    Quote:
    Originally Posted by alialex2 View Post
    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.
    I know--it stinks doesn't it?? I just wish they could give me a definitive answer as to why I have anemia. Hopefully soon I will find out if it's because of the Nexium I was taking. I hear ya on the feeling tired all the time. I sure hope you get some answers soon!

     
    Old 08-04-2010, 07:52 PM   #65
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    Re: Low Iron & Ferritin - what to do???

    Quote:
    Originally Posted by Numpy View Post
    Your situation is very interesting to me and I'm glad you posted. I am so hoping that the Nexium is the cause of all of this iron troubles for me and once I get all 5 iron infusions and am off Nexium and on Zantac for awhile it's all going to clear up and I'll be back to normal! Thanks so much for posting!!! I really appreciate you sharing your info with us!

     
    Old 08-04-2010, 08:12 PM   #66
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    Re: Low Iron & Ferritin - what to do???

    Quote:
    Originally Posted by Numpy View Post
    Thanks for all your positive infor and encouragement, Katerina! I feel like I am definitely on the right track with these iron infusions! Finally!! Althought, I did get a call from my gastro doctor that said the hematologist wants me to go for one more upper GI scope to see if there is any bleeding there they may have missed. I am really getting sick of these tests, but I DO want to get to the bottom of this, so of course I will do whatever they say. I also have some inflammation somewhere in my body and that confuses them, too. If I don't do well with this iron infusion stuff, I guess the next step is to look into my bone marrow. I'm just claiming that this will work and I won't have to have any more tests!! Keeping a positive outlook!!
    Welcome Numpy!
    In response to your questioning if Nexium would block the iron absorbation-*Yes it does just as Prilosec does-thus that is why I get infusions BUT I had to get off of this med & go on Zantac. Infusions do not effect the absorbtion as it doesn't go through the intestinal track & that is where the iron gets blocked. If you have not seen a hemotologist yet-well shame on your doctor.
    I also have the hair thinning, bad nails, tired & weak at times etc etc & with the infusions my nails are growing better & the hair is not the best yet.
    I use Joan Rivers product for this coverage on my scalp & it is a MIRACLE! It does not come off & only when you wash it....check it out on QVC or the web.
    The thinness does not show & others love it also!
    May you come to some answers soon as I went through all those test too & they found nothing.
    Yes my hemotologist put me on vitamin D & I also take vitamin B12 besides my multi vitamin & calcium & Coq10-that surely helped some.
    Good Luck & keep us informed!
    Seamist :}

     
    Old 08-04-2010, 08:17 PM   #67
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    Re: Low Iron & Ferritin - what to do???

    Quote:
    Originally Posted by Numpy View Post
    Thanks for all your positive infor and encouragement, Katerina! I feel like I am definitely on the right track with these iron infusions! Finally!! Althought, I did get a call from my gastro doctor that said the hematologist wants me to go for one more upper GI scope to see if there is any bleeding there they may have missed. I am really getting sick of these tests, but I DO want to get to the bottom of this, so of course I will do whatever they say. I also have some inflammation somewhere in my body and that confuses them, too. If I don't do well with this iron infusion stuff, I guess the next step is to look into my bone marrow. I'm just claiming that this will work and I won't have to have any more tests!! Keeping a positive outlook!!
    Welcome !
    In response to your questioning if Nexium would block the iron absorbtion-*Yes it does just as Prilosec does-thus that is why I get infusions BUT I had to get off of this med & go on Zantac. Infusions do not effect the absorbtion as it doesn't go through the intestinal track & that is where the iron gets blocked. If you have not seen a hemotologist yet-well shame on your doctor.
    I also have the hair thinning, bad nails, tired & weak at times etc etc & with the infusions my nails are growing better & the hair is not the best yet.
    I use Joan Rivers product for this coverage on my scalp & it is a MIRACLE! It does not come off & only when you wash it....check it out on QVC or the web.
    The thinness does not show & others love it also!
    May you come to some answers soon as I went through all those test too & they found nothing.
    Yes my hemotologist put me on vitamin D & I also take vitamin B12 besides my multi vitamin & calcium & Coq10-that surely helped some.
    Good Luck & keep us informed!
    Seamist :}

     
    Old 08-22-2010, 07:41 PM   #68
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    Re: Low Iron & Ferritin - what to do???

    Well, I had my 5th and last iron infusion a couple of weeks ago. I honestly can say I don't feel much different. For awhile I was feeling warmer, but now I'm back to feeling cold much of the time. Energy level hasn't gone up much either. I know everyone says it can take up to three months for that to come up, so I'm patiently waiting.

    Upon the request of my hematologist I had to have another Upper GI/EGD last week. Had that with my gastro doc and they took a bunch of biopsies and went all the way down to my bowel to check it all out. From what I recall and my husband says, everything looked okay to the doc, but I haven't gotten any results from the biopsies. I would assume that since it's been about a week and a half that if anything serious was going on, I would know by now. I guess I'll find out more info when I go back for my follow up with the hematologist on Sept. 13th where my numbers are, etc, and the results of my EDG biopsies.

    One things I did find out was that I have pancreatic tissue in my stomach!!! Of course I freaked out, but the doc said it was just a genetic thing and not to worry at all. I googled it when I came out of my "fog" from being put out for the procedure and it looks like only 15% of the people in the world have pancreatic tissue in their stomach and it's usually nothing to worry about. OF COURSE "I" would have to be one of the people in that 15%. FIGURES!! LOL!

    So, I'm praying that everything comes back as normal. The gastro doc did say before I had the upper GI/EDG, that my body just may not absorb iron. Lovely. Can't wait to hear if that is the case and what they do for someone in that situation. Iron infusions for the rest of my life? Oh brother!! LOL. Guess I just have to see what happens. I'm going to just keep on praying!!

    -Wendy

    Last edited by Numpy; 08-22-2010 at 07:43 PM.

     
    Old 08-23-2010, 06:13 PM   #69
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    Re: Low Iron & Ferritin - what to do???

    Hey Numpy, I hope all of your GI results are normal! And did they run your hgb and ferritin again after your 5th infusion? Any improvements? I am sorry you're not feeling much better yet but maybe it just takes longer for some ppl and less time for others.

    I hear you on life-long infusions -- it looks like I will be needing them for the rest of my life! Thank goodness for insurance, the hematologist bills are quite hefty.

     
    Old 08-24-2010, 09:55 AM   #70
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    Re: Low Iron & Ferritin - what to do???

    Quote:
    Originally Posted by happyfeet77 View Post
    Hey Numpy, I hope all of your GI results are normal! And did they run your hgb and ferritin again after your 5th infusion? Any improvements? I am sorry you're not feeling much better yet but maybe it just takes longer for some ppl and less time for others.

    I hear you on life-long infusions -- it looks like I will be needing them for the rest of my life! Thank goodness for insurance, the hematologist bills are quite hefty.
    They haven't drawn any more blood yet--they'll do that on Sept. 13th when I go back for a follow-up with the hematologist. Hopefully my numbers will be up! And I hear you about insurance!! Whew!!! I'm blessed to have good insurance--I don't know how people pay for these types of things without it!

     
    Old 08-24-2010, 01:45 PM   #71
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    Re: Low Iron & Ferritin - what to do???

    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

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    Old 08-24-2010, 06:30 PM   #72
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    Re: Low Iron & Ferritin - what to do???

    Quote:
    Originally Posted by skibunny1975 View Post
    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
    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!

     
    Old 09-17-2010, 08:33 AM   #73
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    Re: Low Iron & Ferritin - what to do???

    Well, I had my appointment with my hematologist on Monday. I spent MAYBE 5 minutes with him, I was furious!! He rushed in and rushed out so quickly I wasn't able to remember any questions I had wanted to ask him. I had a second Upper GI/EDG in August. I finally got results the week before my appointment with the hematologist and it came back saying I had gastritis and to continue to take my Zantac. Well, I looked up gastritis online and it said that gastritis can be caused by pernicious anemia -- I did find out earlier that my B12 is low and I have to take B12 daily, so I wondered if I possibly had both pernicious and iron deficiency anemia. I was going to talk to the doc about that but he was really kind of a jerk (so different from his PA that I have been seeing) and I was so caught off guard that I completely forgot my questions and I left there not knowing anything except that:

    Apparently after my 5 IV iron infusions I am no longer anemic! For that I am thankful! My hemoglobin is 12.7 and my ferritin is 67 (I had to call and find that out because they didn't know that day). I thought my numbers would be a little higher than that because I've been taking the Bifera iron pills right along with my infusions. I've read people that have had iron infusions and their ferritin levels soared WAY up there like to 300 or something, but I guess that doesn't happen for everyone.

    To all the great minds out there: do my numbers seem okay to you after getting my series of iron infusions? I have to go back in three months for follow up appointment and get my blood tested again. I will continue to take my iron pills and see if I can start gagging down that blackstrap molasses I bought a few months ago and see if I can keep my numbers up. I just don't want to have to keep going thru this. AND I want to keep my hair! My gosh, has it gotten thin!!!

    Anyway, thanks in advance for any info you can give me about your levels after infusions.

    -Wendy

     
    Old 11-18-2010, 10:52 AM   #74
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    Re: Low Iron & Ferritin - what to do???

    Hello,
    Thanks for this message I had the same thing happen to me after my three kids, my Iron level is 9. I am going to try the iron meds wish me luck!!!!

     
    Old 11-02-2011, 07:02 AM   #75
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    Re: Low Iron & Ferritin - what to do???

    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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