Fill Out Your Profile to share more about you. Learn more...

Iron Infusion—have you had one?

Options
jons_girl
jons_girl Member Posts: 444

Hello Friends:

I had a phone appt with my MO today. We talked about my blood work. My iron deficiency panel is just not changing much. My ferritin hasn’t gone above 27. It’s 16 now. She said it should be around 100.My body isn't absorbing iron so she is ordering a iron infusion.

Have any of you had iron infusions? Are there brands or certain type of iron for infusions that are preferred over others? Any side affects I should be aware of? Anything else you can share about your iron infusion experience.. I would appreciate knowing.

Thank you in advance for sharing this information. I've never had a iron infusion before.

Hope you all have a wonderful weekend.

Comments

  • debal
    debal Member Posts: 600
    Options

    hi jons

    I had 1 iron infusion pretty soon after I completed chemo. Hemoglobin was normal but ferritin was low. No issues but in my case I wish I would have questioned it more. I felt fine and I think I just needed more time.

    It looks like you have been dealing with this for a bit and thats different situation.. Any chance you have any GI issues that would affect iron absorption? Should you be under the care of a GI Dr I would pull them into the discussion. I don't know anything about brands etc. Infusion took maybe an hour or 2 and I had no issues.

    Take care!



  • threetree
    threetree Member Posts: 1,365
    Options

    Don't know if you are totally sold on the infusion idea or open to anything else, but when I had a low iron problem from chemo, I ate 2 cans of smoked clams a day for about a week and both my ferratin and B12 went sky high by the time of my next blood draw. I know clams aren't everybody's cup of tea, but they are loaded with iron. Just a suggestion, as I try to avoid all the "heavy duty" stuff as much as possible and try other things first.

    I know a lot of people get those infusions though. It was real common for me to go into the infusion room when I was getting chemo, and see notes on the white board that indicated the person before me had had an iron infusion. Whatever you decide to do, I hope it works and works well and fast!

  • muska
    muska Member Posts: 224
    Options

    Hi Johns-girl,

    I don’t have a personal experience with iron infusions but I have a lot of experience managing this for my late father over many years. Speaking of the infusion itself he never had any problems or side effects from it, even when he was in his early nineties.

    Has your MO tried to investigate the root cause of this problem? This is usually treated by hematologists but many MOs are hematologists too. If not, maybe your MO can refer you for further investigation of the root cause? There could be many different causes, including kidney issues. Depending on the root cause, different treatments could be prescribed. Ferritin infusion replenishes the supply of ferritin but if there are underlying untreated problems it will go down again

    Good luck to you

  • alicebastable
    alicebastable Member Posts: 1,944
    Options

    Mine dipped on the low side last year. My MO, who is also a hematologist, said to take one a day pre-natal vitamins, which are loaded with iron. Problem solved. It's always best to reserve the more extreme solutions for when you've run out of other options.

  • jons_girl
    jons_girl Member Posts: 444
    Options

    Hi Friends: Sorry for my delay in response. Thank you all so much for responding. I really wanted to hear from people who have had iron infusions because I really wanted to know what their experience was.

    I did want to give a bit of a background on me: I am not sure if I stated this above. But yes, I have already taken natural forms of iron by mouth. It was raising my iron but not tons really and I am menopausal...not bleeding. So testing was done to make sure I wasn't bleeding elsewhere. I had bone/joint pain so had pet scan. All was fine. Yes my oncologist is also a hematologist. She told me that there are studies that show now that Ferritin should be around 100. Mine is 16 right now. I looked back to like 2008 and my Ferritin back then was I think 13. So l am definitely low. My oncologist/hematologist told me that I may just have a tummy that doesn't absorb iron like it should. So that is why iron infusion seems to be the right option for me to try. I am vegan so that can cause lower levels of iron. But I do eat foods that have iron however that doesn't seem to matter.

    I will answer some of your questions and give some comments on your posts.

    DebAL: Thank you for your comments. I didn't have chemo. My hemoglobin has been ok. But my oncologist/hematologist told me that eventually it probably won't be because my ferritin is on the low end. So while my body is making red blood cells now she stated that probably would change.... My oncologist/hematologist thinks my tummy might just be one of those tummies that doesn't absorb iron well. I had a GI doctor but didn't like her really. At this point I am just going to try the iron infusion to see if it helps my energy level and other things I think it may help with. Thank you for sharing your experience!

    ThreeTree: I don't like to use the 'heavy duty' stuff either. I tend to be pretty natural when it comes to my health. I am vegan so no clams wouldn't be a option for me. so no really no other natural options. I have tried to eat well and have taken natural iron supplements. That helped some but I didn't think I should have to take them long term because I do eat really healthy and I am post menopausal. So it may be that my tummy just doesn't absorb the iron well overall. I am not sure. So I am strongly considering going the iron infusion route. Thank you for sharing your thoughts.

    Muska: Thank you for sharing your fathers experience with iron infusions. Yes my oncologist is a hematologist too. She has told me that my ferritin really should be around 100 and it is 16. If I have the iron infusion and my levels go down again I am assuming we would do more testing. But I have had joint pain and my alk phos is on the high end. So I am hoping maybe iron infusion can help with this other stuff as well. Will see I guess. Thank you for sharing your thoughts.

    Alice: I have tried other things....and I do not think my tummy is absorbing iron like it should. My binding capacity is quite high too. So she said with ferritin levels going up after infusion the binding capacity would go down. So will see.....maybe this will also help my osteopenia. Low ferritin I am sure probably affects a lot of other things as well. Iron is important. Thank you for sharing your thoughts.

    Hope you all have a wonderful weekend!

  • minustwo
    minustwo Member Posts: 13,116
    Options

    Jon'sGirl - I talked to someone last night who tripped my memory. I was directed to take "Slow Fe" when my iron dropped precipitously during treatment. It worked well for me.

    https://www.slowfe.com/


  • olma61
    olma61 Member Posts: 1,024
    Options

    not to thread hijack but ThreeTree, got any good recipes for those clams?

  • minustwo
    minustwo Member Posts: 13,116
    Options

    Olga - I'm always looking for good recipes if you're willing to share..

    BTW - I LOVE smoked oysters. Great on Triscuits. Some brands have 30% of the daily iron requirement & some have 40%. That's often my dinner,

  • olma61
    olma61 Member Posts: 1,024
    Options

    thanks minus two, I am in the low iron club and I do like oysters and clams

    I avoided the iron infusions because I started responding to the oral iron supplement

  • threetree
    threetree Member Posts: 1,365
    Options

    Olma - You know I don't have any recipes, sorry to say. I just eat those smoked clams right out of the can. Just like smoked oysters. I think the clams have a bit more iron than the oysters do though. My dad used to have cans of clams, oysters, sardines, etc. with crackers and a beer on Saturday afternoons, and I would often join him. That's where I got my "love" for those things and I just continue to eat them the same old way - on crackers or just out of the can. A can and some crackers and an apple are a great lunch!

  • alicebastable
    alicebastable Member Posts: 1,944
    Options

    ThreeTree, I used to love smoked oysters or mussels on a slice of Swiss cheese on a Rye-Krisp cracker. Yum. Sometimes I'd use mustard sardines instead, mashed up with a little minced onion. Beer sounds perfect with it!

  • minustwo
    minustwo Member Posts: 13,116
    Options

    yup - right out of the can - with crackers on the side, or not. I'll have to get some smoked clams & check out the iron.

  • jons_girl
    jons_girl Member Posts: 444
    Options

    minus two: thank you for the info on the slowfe. My problem isn’t that I have side effects. It’s that my body isn’t up taking the iron like it should. Not as well as it should I guess. So iron infusion is supposed to help with that.

    I’m hoping more people share their iron infusion experiences. It does seem to help people

  • homemom
    homemom Member Posts: 830
    Options

    If you are of Mediterranean descent or S. American,, you could have thalassemia. I have was diagnosed with it when I was pregnant with my second child. I'll never have acceptable levels of iron, even if I take supplements. It's a simple blood test. I've always been over 15, sometimes 20. I would think a hemotologist would hav suggested testing for it if they thought you would fall into that category, but it might be worth asking

  • threetree
    threetree Member Posts: 1,365
    Options

    Alice - That swiss cheese along with the rye crisp with the oysters/clams sounds great! Thanks much for the suggestion. Just might try it one of these days. Back when I was in jr high and high school, my bestie and I would go down to the beach near our homes and we would just make a little fire with sticks we found and throw some seaweed and mussels on it, and call it lunch. We only lived about 3 blocks from the beach, but it was a hike up and down a cliff to and from, and we didn't want to have to climb back up the hill and go home when we got hungry, so we figured we'd just make our own lunch there on the beach. Those shell fish can come in real handy, although I understand now that they can be loaded with heavy metals that can actually promote cancer and metastasis, so I do try to limit these days.

    HomeMom - The SlowFe sounds like it might be worth a try for you. Re your absorption issue, one of my chemo nurses told me back when I was getting chemo that sometimes adding iron doesn't work, because a lack of iron isn't the problem. She told me that during chemo though, implying that the chemo was just preventing the formation of red blood cells or something and that while I could supplement with all the iron in the world, it might not help. I think I did the clams after chemo and just put up with the low iron during chemo, but it looks to me like you are not doing chemo right now. Is there some other thing that might be affecting your red blood cells, formation, etc? Do your labs show anything unusual with your red blood cells? Just some thought, I'm hardly an expert.

  • olma61
    olma61 Member Posts: 1,024
    Options

    Home mom - I have the beta thalassemia trait - you will never have normal hemoglobin levels but supposedly, iron levels should be normal. That is what my oncologist says anyway. she is a hematologist too. Also, my PCP always said the same thing. I am currently on iron supplementation from my onc who also wants me to have a GI work up due to my low iron levels. : ( I tried to argue the thalassemia trait but she would not accept that. It does seem logical that malformed blood cells would effect blood iron levels but what do I know

    Three tree and everyone else - thanks for the clam and oyster prep suggestions :D

  • jons_girl
    jons_girl Member Posts: 444
    Options

    home mom: no I don't have those in my genes.

    And my non absorption issue is probably just my gut not complying but that is supposed to be irrelevant when a person has a infusion because it essentially skips the stomach so I've decided to go that route

    Hoping for more people to tell me how their iron infusions went. That's really what I'm asking here. Because yes I've tried taking stuff and it doesn't help much. Also I'm making red blood cells but ferritin is low. So hematologist stated eventually I won't make red blood cells…so I'm trying to replenish iron before I get to that point

    let's try to stay on topic here if possible. I'm looking for people to talk about their iron infusions. Not trying to be rude. Just keep us on topic. Thank you all for your comments tho. I do appreciate those who shared about their personal experience with iron infusion or family who had it.

    Have a great day evrr

  • homemom
    homemom Member Posts: 830
    Options

    My MO is also a hematologist as well. Two visits ago my hemoglobin was lower than normal and the PA brought it up but not my MO. Every doctor I've ever had, from the OBGYN to my MO has said there is nothing I can do about it. I'll bring it up again to get her opinion. My son is now 32 years old, so it's been a while since my diagnosis. The OB had a fascination with blood makeup and ran a special test on me.

  • jons_girl
    jons_girl Member Posts: 444
    Options

    my ferritin is on the lower side. Not my hemoglobin. But if it were my MO would be even pushing me more to have a iron infusion probably. That’s interesting your MO isn’t concerned.


  • jons_girl
    jons_girl Member Posts: 444
    Options

    hoping other women will share their iron infusion experiences. Did it help you? Side effects? Other info you can share about the experience would be appreciated. I have iron infusion scheduled for March.

  • jons_girl
    jons_girl Member Posts: 444
    Options

    Please share about your iron infusion

  • jons_girl
    jons_girl Member Posts: 444
    Options

    Please share your iron infusion experience thank you.

  • sarahnh
    sarahnh Member Posts: 105
    Options

    I'd also love to hear from people who have had an IV iron infusion. Especially during chemo. About the experience, any side-effects etc. TIA for any info!

    (My hemoglobin is around 8.5 and my oncologist has recommended IV iron)

  • jons_girl
    jons_girl Member Posts: 444
    Options

    Hi Sara. I’m having my iron infusion this wk. so I guess I can share my experience after my iron infusion. I will try to get more responses from the forum again. Can more people share their iron infusion experiences??

  • sarahnh
    sarahnh Member Posts: 105
    Options

    Thanks jons_girl! Iron infusion almost seems to be a taboo topic here (just kidding - but like you, I wish more people who've had them would post here)!

    If I have one, I will make sure to post here about it. I may end up with a transfusion instead, having tried to avoid the iron for so long. I hope yours goes well, and helps solve the issue.

  • sondraf
    sondraf Member Posts: 1,601
    Options

    I had one of these during my hospital stay post surgery. I pretty much didn't have a choice - there was some team roaming the hospital and if your iron levels were even slightly low you got stuck with iron. The anaphylaxis side effect sounded really scary but it was all very straightforward and a nurse checked on me in the first 10 minutes for pain/breathlessness and then I had the call button to press if I had pain.

    Honestly didn't feel any better or worse after it, but figured a little extra iron wouldn't go amiss. No digestive issues either, which has been a problem for me in the past taking oral iron.

  • jons_girl
    jons_girl Member Posts: 444
    Options

    Hi Sarah and Sondra: Thank you! I hope my infusion goes well too. I am a little nervous. Sondra yes the anaphylaxis side effect scares me. I am glad your iron infusion went well. So it didn't help you feel better afterward. Hum well that isn't good huh? Yeah I am hoping I don't have any digestive issues. That is good you didn't have that side effect. Well I guess I will know after this week! Thank you both for posting. I will let you know how my iron infusion goes. I am having it done on Friday.

  • jons_girl
    jons_girl Member Posts: 444
    Options

    I had my iron infusion today. So far all is well. No side effects really. I think it's supposed to take a week or two to feel the effects of the iron infusion tho. Will see. I was very tired post infusion. Still tired. Going to get good sleep tonight.

  • sarahnh
    sarahnh Member Posts: 105
    Options

    Thanks sondraf and jons_girl for posting your experience with the iron infusion!

    jons_girl - how are you feeling now that it's a few days out?

  • jons_girl
    jons_girl Member Posts: 444
    Options

    Sarah I think it’s made a difference but it’s still pretty early. They don’t recheck blood for 6-8 wks. And I think someone told me it can take a wk or two to notice results? So will see. But right after infusion I was so sleepy and relaxed. I think my body really needed it. And I think I’ve noticed more energy. Also I think I’m sleeping better overall. But I may need more than one infusion too, to get my level where it needs to be. So will see how it goes. I will update on my iron level and how the infusion helped