It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Anemia Message Board


Anemia Board Index
Board Index > Anemia | 0-9 A B C D E F G H I J K L M N O P Q R S T U V W X Y Z


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!
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.
[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
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! :)
Sorry to hear about your trips to A&E, as I have said before you're story follows mine really closely, but with events happening in reverse. I know how frightening palpitations can be, have had them for years, 2 heart ablations even, and only now are they manageable, I like to think it is because of my thyroid/ferritin level causing them now and once they're sorted they will stop.

Please let us know how you proceed from here, sounds like you're on the right track at last!

Sue
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=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!
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=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!
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.
[QUOTE=jonnstar;4261266]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.[/QUOTE]

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....
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!
[QUOTE=happyfeet77;4291059]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![/QUOTE]

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!
[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.





All times are GMT -7. The time now is 01:43 PM.





© 2021 MH Sub I, LLC dba Internet Brands. All rights reserved.
Do not copy or redistribute in any form!