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

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    Old 06-07-2010, 04:55 PM   #46
    jonnstar
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    Re: Low Iron & Ferritin - what to do???

    Didnt they give you an antihistamine before the iron infusion? I thought that was pretty standard practice? Taking a Zyrtec and 2 Aleave before the session can mitigate any reactions (though discuss with your doctor)

    Have you tried Ferrochel iron? Its meant to be adsorbed much better than other oral iron.

    NSI Ferochel Iron 45mg costs 12 dollars for a years supply online, so it might be worth risking 12 bucks to see if it helps? Taking it with a glass of OJ helps boost adsorbsion even more.

    Seeing if you could change from Nexium to Zantac might be an idea - Zantac allows production of some stomach acid, so it doesnt interfere with nutrient adsorbsion as much as Nexium. Y+Thats one to discuss with your doctor.

    Last edited by jonnstar; 06-07-2010 at 05:02 PM.

     
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    Old 06-07-2010, 07:00 PM   #47
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    Re: Low Iron & Ferritin - what to do???

    Quote:
    Originally Posted by jonnstar View Post
    Didnt they give you an antihistamine before the iron infusion? I thought that was pretty standard practice? Taking a Zyrtec and 2 Aleave before the session can mitigate any reactions (though discuss with your doctor)

    Have you tried Ferrochel iron? Its meant to be adsorbed much better than other oral iron.

    NSI Ferochel Iron 45mg costs 12 dollars for a years supply online, so it might be worth risking 12 bucks to see if it helps? Taking it with a glass of OJ helps boost adsorbsion even more.

    Seeing if you could change from Nexium to Zantac might be an idea - Zantac allows production of some stomach acid, so it doesnt interfere with nutrient adsorbsion as much as Nexium. Y+Thats one to discuss with your doctor.
    Jonnstar--thanks so much for the information and advice!! I am going to print this post and talk to my doctor at my next appointment. I can't tell you how much your response helps--I am beyond frustrated today....

     
    Old 06-08-2010, 05:40 PM   #48
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    Re: Low Iron & Ferritin - what to do???

    Oh, and YES, they did give me Benedryl drip thru my IV before I got the iron. I got through almost all of the test IV iron and then I just started to feel strange and my throat started to itch. I waited between 5 and 10 minutes before I told my nurse because I have a cough and wondered if that's why my throat felt different. Unfortunately that wasn't the case. They pushed the Benedryl through the IV and the itchy feeling went right away. Nope, not the cough. Apparently my eyes got puffy, too. I can't believe it! I can take iron in pill form just fine--I don't understand why I can't take IV iron just as well. Does anyone know why?

     
    Old 06-08-2010, 06:25 PM   #49
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    Re: Low Iron & Ferritin - what to do???

    Not sure why, but I know reactions are quite common with iv iron - thats why they preload you with benadryl.

     
    Old 06-08-2010, 06:31 PM   #50
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    Re: Low Iron & Ferritin - what to do???

    Has your Dr. said anything about taking a B-12 suglingual pill that would help. Don't take your iron with milk cause milk chelates the iron and will just take to your stomach and out of the body. Try cooking in an iron skillet that is good too. Iron makes people constipated so make sure you are getting enough fiber also.

     
    Old 06-09-2010, 01:03 AM   #51
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    Re: Low Iron & Ferritin - what to do???

    If you're low in iron, extra B12 wont help you - the only thing that helps iron deficiency anemia is iron

     
    Old 06-13-2010, 12:47 PM   #52
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    Re: Low Iron & Ferritin - what to do???

    Numpy--Welcome!

    There is a big difference in the amount of iron that you are getting in an IV. A different form also. It is typical to have symptoms with IV therapy. Take care.
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    Old 06-14-2010, 09:16 AM   #53
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    Re: Low Iron & Ferritin - what to do???

    Quote:
    Originally Posted by FLFLOWERGIRL View Post
    Numpy--Welcome!

    There is a big difference in the amount of iron that you are getting in an IV. A different form also. It is typical to have symptoms with IV therapy. Take care.
    Thanks for your response FLFLOWERGIRL--I go back to the hematologist on June 29th and am wondering if she'll let me try the IV therapy again. I really am getting desperate--beginning to feel SO TIRED all the time. I am sick and tired of being sick and tired! Does anyone know that if you've had a reaction to IV iron if that means you can't ever get it that way again? The nurse did say there was another option, but I didn't even have the energy to ask her what it was because I was beyond depressed from it not working and had lots of Benedryl in my by that time.

     
    Old 06-29-2010, 06:33 PM   #54
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    Re: Low Iron & Ferritin - what to do???

    Well, I went back to the hematologist today and I can NOT believe how right on everyone that posts on this board is!! Well, actually I can, but I am REALLY IMPRESSED!! The doc ran tons of tests on my blood and along with my low hemoglobin, hematocrit, MCV, MCH and ferritin, I am also on the low end of B-12. There was also some inflammation in my system and since I'm not in a flare with my ulcerative colitis, she said there may be just enough inflammation somewhere in my intestines (possibly) that is causing some malabsorbtion problems. She also said one of the main reasons I MAY have iron deficiency anemia is because of the Nexium! I told her that I was on a message board that suggested that may be the reason already (you guys are good)!! LOL!! She switched me from Nexium to Zantac and I'm going to try that for a few months to see if my "iron" numbers start to rise. She also said a multi vitamin was also necessary (something I ALSO learned here from all of you that posted!). I am just so impressed with all the knowledge you all bring to these message boards, it felt so good to be able to talk to my doc and have her validate all the info you have all given me. I brought a whole list of info I learned here to talk to her about.

    She didn't have my ferritin numbers today, but will have them by tomorrow and if they've dropped since my last visit, I WILL have to go in for more IV iron; she'll just try something different and hope I don't have a reaction (a different "brand", I guess, that instead of going in for a 4 hour treatment every few months, I would go in once a week for 5 weeks and it would be about an hour each time).

    I now also have to start taking 1000 mg of B12 daily. I'll have to go read up on all the B12 posts. Don't know what to expect with this, if I'll have trouble with my stomach or not...

    One quick question, tho, when you all take your multi vitamin, do you take it with food or without. I had so much info given me today, I can't remember what she said. If I remember correctly she said I could take it at bedtime. Does that sound right?? Maybe she said take the Zantac at night? I always take my Nexium in the morning, so I think that's when I'll take the Zantac, but any info anyone can give me will be much appreciated.

    Again, I can't thank you all enough. You have been such a blessing to me as I go thru this journey. It really helps to have people respond and want to be helpful!! You are all awesome and I appreciate you so much!

    -Wendy

     
    Old 07-02-2010, 08:57 PM   #55
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    Re: Low Iron & Ferritin - what to do???

    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.

     
    Old 07-05-2010, 04:46 PM   #56
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    Re: Low Iron & Ferritin - what to do???

    Hi. Yes, I have had Venofer IV courses a few times and I think it raised my ferritin. I felt great, so much less tired after having them. I can't recall the side effects but I tried to hydrate myself before the IVs. If you have questions, call your doctor or the unit that you will be getting the IVs from. Good luck! I hope it helps.
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    Old 07-07-2010, 06:07 AM   #57
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    Re: Low Iron & Ferritin - what to do???

    Quote:
    Originally Posted by Amyb76 View Post
    Hi. Yes, I have had Venofer IV courses a few times and I think it raised my ferritin. I felt great, so much less tired after having them. I can't recall the side effects but I tried to hydrate myself before the IVs. If you have questions, call your doctor or the unit that you will be getting the IVs from. Good luck! I hope it helps.
    Thanks for the info--I really appreciate you letting me know how they worked for you! By the way, are you still anemic or did the infusions help you from being anemic?? I am so hoping that this does the trick for me!

     
    Old 07-20-2010, 11:54 AM   #58
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    Re: Low Iron & Ferritin - what to do???

    Well, I've had my 2nd round (week of) Venofer IV infusions and have had no side effects! I have noticed that I'm not freezing all the time, too! I honestly haven't sweated in years (because I was always so cold) and I've been hot and actually sweated at times! I can't believe it!! I am praying that between the switch to Zantac and the IV iron, my iron and iron stores (ferritin) will put me back at normal levels and I can get on with my life (even it it includes sweating!). LOL!

    I will keep you posted on how it goes once I'm done with the IV iron. I have three more weeks of them, then wait 6 weeks before I see the doctor and give blood again before they check where everything is at. I'm believing that I'm going to be back to "normal".

    Thanks to all who have read and commented on my situation. You have all been so wonderful!

    -Wendy

     
    Old 07-21-2010, 04:28 AM   #59
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    Re: Low Iron & Ferritin - what to do???

    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 :-)

     
    Old 07-21-2010, 11:31 AM   #60
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    Re: Low Iron & Ferritin - what to do???

    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!

     
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