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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!
[QUOTE=wanglin;4254787]I have had 2 iron IV infusions (don't get confused with transfusion) and am set up to have my 3rd in about three weeks. This has been over a 3 year course. My Ferritin levels went from 165 last August to 32 a week ago, so my body is still not naturally absorbing iron even thought I take 1 Icar tablet each day. My white blood and red cells are below normal levels and my hemaglobin is low as well. I am still very frustrated about the hematologist not knowing why I can not absorb iron after every test inthe book(Bone Marrow, Pill cam, endoscopy, colonoscopy, smear tests). The PA last visit said, " I guess we'll just write it off to your cycle as the issue" and I immediately told her NO Way as my cycles are not heavy. I truly think it is a heriditary auto immune disease since my sister appears to be anemic as well without answers. I hope that maybe something will stand out in your blood work to give your doctor a direction to take.

On the first visit you can expect a great nap as they feed you benedryl in case your body reacts to the iron in a allergic way. I have not had an allergic reaction and feel pretty normal afterwards, just groggy fromt he benedryl. The only other thing to watch out for is bad headaches, and lower back pain or joint pain because your body is trying to absorb a large quantity of iron all at once. Cheers to IV Iron![/QUOTE]

Thanks for the response and for the correction about infusion rather than transfusion! Rookie mistake!! LOL! The info you gave me was REALLY helpful. I have a couple of questions, tho, other than the headaches and back/joint pain, did you notice that overall you felt better right away? Honestly, I don't feel ALL that bad. Tired, yes--but I think I've been this way for so long it doesn't really slow me down or stop me from doing what I've always done as far as chasing after my family. BUT once I get home, I see that I am TIRED and it's not a normal tired... I really, REALLY tired, but I don't sleep well, it is really strange. :confused: So there's not a ton of motivation to get out and exercise and that's what I'm hoping this iron will do for me. Help me to feel better all around that I WANT to exercise and feel better!

I am so sorry that they're not able to get to the bottom of your iron problems; that IS so frustrating. My gastro doc did the same thing--"it's because of your period" and "you're cold all the time because you're a woman, women are generally colder than men; it's not anemia related". Frustrating. I hope they can get it figured out for you. Do you by any chance take Nexium? I am really hoping that's the main cause of my anemia and this will just "go away" if I am able to stop taking it.

I hope to hear back from you :wave: and thanks again for taking the time to post an answer! You don't know how much I appreciate it!

**Jonnstar--I will look into this! Thanks for your responses, also! So helpful.

-Wendy
I think the reason behind you not sleeping well even though you are so tired is because of the insomnia that anemia causes. Your body can not rest well even though you are tired. Sometimes, it takes me 2 nights of major insomnia to finally pass out on the 4th night and finally sleep the whole night. I personally feel that hormones probably play a factor in that as well.

I too, do not typically feel bad on a day -to-day basis. I am just so exhausted by the end of the day and don't have much energy. I would not say that the infusions have changed that. After getting the infusions I do feel like I cn exercise a little more without the muscle soreness and lack of oxygen.

I saw the post about a multivitamin and just want to make you aware that after the infusion, your doctor will point out that you can not take a multivitamin that contains any iron because your body will overdose and cause problems for your organs. Read the labels on the multivitamins very carefully.
[QUOTE=wanglin;4256955]I think the reason behind you not sleeping well even though you are so tired is because of the insomnia that anemia causes. Your body can not rest well even though you are tired. Sometimes, it takes me 2 nights of major insomnia to finally pass out on the 4th night and finally sleep the whole night. I personally feel that hormones probably play a factor in that as well.

I too, do not typically feel bad on a day -to-day basis. I am just so exhausted by the end of the day and don't have much energy. I would not say that the infusions have changed that. After getting the infusions I do feel like I cn exercise a little more without the muscle soreness and lack of oxygen.

I saw the post about a multivitamin and just want to make you aware that after the infusion, your doctor will point out that you can not take a multivitamin that contains any iron because your body will overdose and cause problems for your organs. Read the labels on the multivitamins very carefully.[/QUOTE]

Thanks, Wanglin, for this post--I'm sure hoping that I have some good results and can get back to exercising. If I don't, I guess I'm just going to have to push my self to exercise harder than I'm pushing myself right now. I can't remember if I heard that anemia causes insomnia, but that is good to know. Hopefully I'll be able to sleep after I get my infusions--my nights of watching Roseanne re-runs will be over!! LOL

Also, thanks to both you and Jonnstar for the info on the multi-vitamin. I'll be sure to ask my doc about it.

Everyone on this message board has been just amazing and I can't thank you all enough! You put my questions and fears to rest!
[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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