Iron infusion levels

Discussion in 'Vitamins & Labs' started by southernlady, Sep 10, 2017.

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    southernlady

    southernlady Administrator Staff Member

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    Larra

    Larra Well-Known Member

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    @southernlady@southernlady could you place this as a sticky? Please? We are seeing too many people struggling to get needed infusions lately. thanks!
     
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    southernlady

    southernlady Administrator Staff Member

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    Added. Actually I think you can do it too. Many if the original member vets have that ability. At the top of the post on the right are "thread tools" if you are in that group. Toward the bottom is a place to click 'sticky'
     
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    DSRIGGS

    DSRIGGS Yes, that is chocolate covered bacon

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    I saw Susan post this on FB and frankly I am not sure what to think of it because according to reference ranges for ferriten 100 isn't close to being low ....11 for women and 27 for men are typical. I am all for people getting iron transfusions when needed and for whatever reason so many Hematologists are assholes about ordering them
    ...I have no idea why....but honestly the first that popped into my mind is that this is a drug company trying to boost sales.

    I also worry about people thinking that if their ferritin is around 100 that they are going to perish tomorrow if they don't get a transfusion. We all know there are people out there who will have that reaction.

    So have any of you seen any studies suggesting as this site is, that ferritin under 100 is an issue and that the reference range should be adjusted accordingly? Vitamin D3 would be the situation I am thinking of where that is the case.

    Anyway, just my thoughts and again, I am 100% for people being able to get transfusions when they need it so if this helps that is great.
     
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    southernlady

    southernlady Administrator Staff Member

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    With WLS, keeping our ferritin above 100 is ideal. Esp since in the malasorptive surgeries. I looked at this hard before posting this. But if it can help someone who is below 100 and trending down convince their PCP or hematologist to give infusions, then it is worth posting.

    Having to wait til you are below 30 as a WLS patient, esp if symptomatic, is bordering on criminal.
     
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    Patti Lieb

    Patti Lieb If it’s to be, it’s up to me.

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    DSRIGGS

    DSRIGGS Yes, that is chocolate covered bacon

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    I honestly don't even remember posting this Liz but I agree that making people wait to get an infusion until super low is not good. That being said, I still don't think a Dr should do an infusion at 100 since that is well in range. I also like and respect Susan a lot.

    I recently had an injectofer infusion, series of 2 that were given 2 weeks apart. The following is a graph of my ferritin over the years and I have never supplemented iron. That high spot is after Dr K did a surgery on me and later the day of surgery saw I was getting and infusion of venofer which shocked me because my iron or ferritin had never been close to low but apparently I must have lost a good deal of blood in surgery because my iron had plunged to 8.
    [​IMG]
    My ferritin was 33, still barely in range but clearly tanking. My iron was 66 which was still decent.
    Component Your Value Standard Range Flag
    IRON 66 mcg/dL 31 - 144 mcg/dL

    That being said I was feeling crappy so I went to my Hematologist and actually saw her PA Rachel who was great. She talked to Dr Prager and she said even though I was still in range she saw the trend line and said give him an infusion. I just got my results and my ferritin jumped to, well here is the panel
    [​IMG]

    So I am very thankful to have a great PA at IL Cancer Care who will take care of me. She asked me on my follow up if I wanted to schedule another appointment or in her words, "use us as an infusion center for iron if your ferritin drops again".

    I agree that when there is a strong case of ferritin taking that if you drop below 50 that you should be able to get an infusion. I don't think that one is likely to get a Hematologist to do an infusion when ferritin is at 100 as that is still well in range. I get that we need to keep lab values in a good range but personally I don't think at 100 that an infusion is really justified. I think another assay ferritin should be done 30-60 days later to see if it has dropped down to 50 or lower and then if so an infusion is justified. Just my opinion and I am certainly not a Hematologist so I am no expert in that regard. I am just thankful I got my infusion when I did. It helped a great deal.
     
    Last edited: Sep 14, 2018
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    southernlady

    southernlady Administrator Staff Member

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    That level is our best marker. True. most people aren't symptomatic til much lower. But I do know of vets who have gotten infusions if it hits 100 or below. Much depends on the person's medical situation. I know that mine has dropped quickly in the past and at a ferritin of 50 AND/OR an iron sat % of less than 30 gets ME infusions due to my personal medical history. Someone else may be fine at 50.

    The idea of this post was to help those who needed help in arguing with their medical team who are sitting at 11 (normal) and in serious medical trouble from anemia to get the help they need. Many are reporting their docs aren't doing anything til they hit 3.
     
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    Patti Lieb

    Patti Lieb If it’s to be, it’s up to me.

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    I had my first iron infusion last week and will have the 2nd one tomorrow to complete the treatment of Feraheme. My ferritin was at a 9! I had to find a hematologist myself since my Internist recommended a holistic doctor to perform an infusion and he didn’t take insurance. Needless to say I have an appointment with a different Internist. It’s part of the dance we have to perform after having a DS.
     
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    Zarabear

    Zarabear Well-Known Member

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    Meeting with Fremont Bariatric for Kaiser on Monday to try to hit all of their hoops. Dr. Tested Ferritin and it's now at 10. :( didnt order the other iron levels this time around though.
    Sick and tired of feeling tired. All other vits are doing well, but I'm not absorbing the iron it seems. Recently added in acetyl carnitine and copper as those levels dipped slightly on last labs.
    Frustrated with Kaiser. Printing up the initial article to take with me.
     
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    Patti Lieb

    Patti Lieb If it’s to be, it’s up to me.

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    I finished 2 doses of iron infusions this month. My ferritin was at 9. I was tired and couldn’t stay awake. I called my insurance company and they found a hematologistfor me. She had no problem ordering the infusions. The iron was Feraheme.
     
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    Zarabear

    Zarabear Well-Known Member

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    Update on me v Kaiser.

    Venofer ordered. :)
     
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    Zarabear

    Zarabear Well-Known Member

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    Update - Venofar NOT ordered. And Kaiser continues to drag their feet.

    My Primary says that my iron levels are normal, and an infusion would be harmful.
    The Bariatric Dr has gone silent, wont' return calls to me OR the Primary, or respond to emails. :(

    Labs from 7/31
    Iron - 79
    TIBC - 323
    TIBC (unsat) - 244
    Transferrin - 24%

    Ferritin - (July 31st- 18) Sept 30th - 10

    And of course open enrollment ended Friday and now I'm stuck for another year. Sorry to vent, going to request the referral to the hematologist since I jumped through their hoop and traveled to Fremont to see this Bariatric department.
     
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    southernlady

    southernlady Administrator Staff Member

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    I'm sorry ZarabearZarabear
    Kaiser seems to do all they can to avoid helping their patients.

    My latest iron sat % is 23...the rest of my iron panel is fine. But my secondary RLS is back. I have an appointment with a hematologist on the 24th of Oct and should be getting infusions shortly after that as it's in MY health file at that office to infuse me if my ferritin falls below 50 OR my iron sat % falls below 30.
     
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    JackieOnLine

    JackieOnLine Moderator Staff Member

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    :angry smile:

    are there ANY good insurance companies? maybe it doesn't matter, since if there are, I won't be able to use them.
     

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