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  • After Iron IV - I feel like a new woman!

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    Old 03-13-2007, 11:34 AM   #1
    Mom2JAM
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    After Iron IV - I feel like a new woman!

    Hi all,

    I had posted a month or so ago about my issues w/ anemia and wanted to update and encourage those who haven't to SEEK HELP.

    My history is that I had gastric bypass surgery almost 5 yrs ago and was doing fine until I became pregnant and started eating ice by the bucket-full.
    The dr wasn't concerned...I wish I knew then what I know now.
    Had blood tests every six months or so and told them I was more fatigued/depressed/eating tons of ice but they all said my levels were fine. What was really happening is that my body was using up all my stored iron and I was already on a downward spiral...
    Started taking Tandem iron this past fall and my numbers kept going down.


    So, had upper/lower GI done and all was fine - no internal bleeding, had ultrasounds and nothing could be found. Made appt w/ a hematologist who is also an oncologist and he said, "You probably just can't absorb the iron and need the IV" I begged him to start that day as my insurance had approved the treatment and he was willing to do so.

    I sat in a room w/ about 8 other people who were receiving chemo (an enlightening experience that makes one have a grateful attitude). They gave me benadryl in the IV to prevent any allergic reaction and then did the iron.
    It is just an IV...a little poke(for those who are fearful of this being painful) and kick back and read. That is, until the benadryl kicks in and the eyes start to cross....zzzzzzzzz. It was easy and so worth it!

    So far, I have had three treatments and will monitor my blood levels to prevent this from happening again....but, in the course of those three weeks I feel like a new woman.

    My kids were used to stepping over me while I dozed the day away. I couldn't walk across a room w/o having to sit and rest. I could fall asleep standing up and I felt like I was dying. Actually, I was dying...being diagnosed w/ cancer wouldn't have been any scarier than what I was experiencing...I had no life, no energy, no emotion, no joy, and life was slipping away.

    Within that time period, I now have true energy for the first time in years...I jokingly tell people that now I shave my legs every two days...whereas before I shaved them every two months whether they needed it or not.

    My encouragement to anyone struggling w/ this is to not accept a dr telling you to 'live with it' or keep trying what hasn't worked. Be insistant on getting help and if that means going for IV treatment...do so.

    I think men are great...but I am convinced that if men struggled w/ the same health issues that women do (menstrual cramps, yeast infections, pms, anemia and so on) that they would find a cure overnight.

    My family doc kept minimizing what I was experiencing w/ the complete exhaustion until I called and asked his nurse, "If I was a 45 yr old man complaining of being so tired that I couldn't get out of bed, go to work, or get through a day w/o 3 naps" would you take me more seriously?? Wouldn't you be running every test under the sun to find out what is wrong?? Why does my being female make it acceptable that I can't get out of bed or complete a sentence because I am so foggy headed?? That got their attention and they agreed that my complaints deserved the same attention.


    So, there is my two and a half cents worth...
    Tana

     
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    Old 03-13-2007, 01:03 PM   #2
    fjones1
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    Re: After Iron IV - I feel like a new woman!

    Wow. That's good to hear. I'm happy for you. I wish I could find the right solution for my problem, but my last specialist keeps telling me that IV iron is only for people who are severly anemic, below normal lab levels, or people who can't tolerate oral iron. My numbers are a little higher than yours were, within the normal range, but I still have horrible symptoms associated with anemia. The only supplement I can tolerate isn't bringing the numbers up much. Whenever I try to explain my symptoms to her, extreme fatigue, fogginess, dizziness, etc, she just says I look good on paper and there's nothing else she can do. By the way, what kind of iron did you have? Did you have iron dextran or infed, or the newer kind?

     
    Old 03-13-2007, 01:10 PM   #3
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    Re: After Iron IV - I feel like a new woman!

    That is great to hear - I have dropped down into the 9s again but at least now know that it is likely tied to hypothyroid (causes a lot of the same symptoms of brain fog, constant cold, extreme fatigue with an inability to sleep, and heavy periods - which then drive down the counts even more) and while they are starting to address that it takes a month to level out, and still doesn't rebuild my iron stores - I am very intolerant to the oral iron, you have given me some hope that the IV wouldn't be a bad experience - thanks.

     
    Old 03-13-2007, 02:53 PM   #4
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    Re: After Iron IV - I feel like a new woman!

    I pulled out my blood test. It was since 1999! My ferritin was 5. Until now is still 5. No doctor recommanded and they all said I have it for so long, I can live with it! Now a new gastro Dr will do the iron infusion for me on this Friday. I'll post again here and let you all know how I went through. I hope I won't feel foggy and unable to drive home! Thanks for the informations. Really appreciate.

     
    Old 03-13-2007, 03:44 PM   #5
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    Re: After Iron IV - I feel like a new woman!

    Mom,
    I'm also happy for you!
    Fjones,
    I'm in the same boat as you! Just because my numbers are "normal range" according to the nurse on the phone, I still feel exhausted! I just don't understand that after taking iron pills for 14 years and having an iron infusion in Dec. 2005, then how come I don't need any iron now? Is it because of my monthly B12 injections? Are they making my numbers "normal"? I don't feel normal AT ALL! And they don't give me any energy!

     
    Old 03-13-2007, 03:48 PM   #6
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    Re: After Iron IV - I feel like a new woman!

    Mom2Jam,
    Just a question-- how did you find out that your body was using up all of your stored iron? Did your blood tests ever show low numbers?
    How great to find that hemotologist that decided to give you the IV iron. I would LOVE to get it again!!!! What did he base his decision on for you to get the IV iron?
    Thanks,
    elphers (Mary)

     
    Old 03-13-2007, 11:13 PM   #7
    Mom2JAM
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    Re: After Iron IV - I feel like a new woman!

    Hi Mary and all,

    My understanding is that the ferritin measures your iron stores...your body will be anemic but as long as the ferritin # are 'normal' then dr's will assume you are fine. Your body will use its own iron stores if it can't absorb iron.
    That won't show until your ferritin drops. The lab report showed the normal range of ferritin to be anywhere from 3 - 720 or something like that and mine was 7. The nurse chimed, "See, you are in the normal range! You can't be anemic!" To which I said... "Being 7 notches above the ground is not good...when I could be, oh....a couple hundred above where I am now and might feel a huge difference!"

    I can't remember how I found this oncologist/hematologist but, he said to rule out any internal bleeding first by having the upper and lower GI and I went on bcp to stop my periods (very light anyway)and after the other tests showed no internal bleeding...he said that I must just not be able to absorb iron through my intestines...so IV was a great option.

    I don't get some dr's reaction as tho' it is liquid gold and they guard it as tho' they don't want to share. Find a hematologist and have them get pre-approval from the insurance company for the IV's. The shame is that so many dr's only trust labs and not the info shared by the patient...I love dr's who look at the patient and ask about the symptoms and trust that more than the labs.

    The other thing about the changes I have had is that after the second treatment, I ate ice for a few days and after that...no desire AT ALL. Ice tastes strange to me and I have no desire to chew it. This from the woman who ate 20lb bags of 'the right kind of ice' from stores that had the best ice.

    Oh, and I am not sure what iron he used...he said it rarely has side effects but they do the benedryl as a precaution.
    Let me know if I can answer any other questions.

    Tana

     
    Old 03-14-2007, 04:50 AM   #8
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    Re: After Iron IV - I feel like a new woman!

    Hi Tana:

    If you were not in Texas and I in Pennsylvania, I would think we had the same hematologist. My Dr. started my IV iron the same day I saw him, when he saw that my Hgb had dropped to 8.4. I have had 3 so far and #4 today. My Hgb is up 9.2 as of last week. I am eager to see what it is this week. I am not light headed or need to take a 2 hr nap, 20 minutes is good though.
    I have been dealing with low Hgb (10-11) for years and no one was that concerned and assumed it was from my periods, because you are female, so that must be it. It wasn't until it got so low and I depleated my ferritin that they sent me to a hematologist.

    Good luck to everyone.

    Phyllis

     
    Old 03-14-2007, 06:04 AM   #9
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    Re: After Iron IV - I feel like a new woman!

    What is the benedryl act for with iron IV? Isn't it benedryl is a cough mixture? You'll get a lot of cough while it drips? What is the side effect of iron IV? I haven't had one yet but soon......

     
    Old 03-14-2007, 10:39 AM   #10
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    Re: After Iron IV - I feel like a new woman!

    Tana,
    I have always taken iron pills because I have celiac sprue. So I have an absorption problem with my small intestines.
    I am having the capsule endoscopy tomorrow, but it still won't change my lab results so that I can get iron.
    Thanks!

     
    Old 03-14-2007, 02:50 PM   #11
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    Re: After Iron IV - I feel like a new woman!

    Mom,
    I am so glad to hear from you! IV iron did the trick, huh? Are they also going to restart the B12 shots? I'm so happy to hear you're feeling better. I was very concerned about you. It sounds like you're in good hands now.

    Keep us posted on how you're doing!
    Best,
    Jill

     
    Old 03-15-2007, 08:33 AM   #12
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    Re: After Iron IV - I feel like a new woman!

    Hi Mom;

    Just a quick question. How do you feel right after the IV iron infusion? Even though it is working great, my Hgb is up to 10, but after I get the IV, I am very acky and tired. The next day or two I feel better, but the ackiness tends to linger. Just curious about how others feel.

    Thanks

    Phyllis

     
    Old 03-16-2007, 05:59 PM   #13
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    Smile Re: After Iron IV - I feel like a new woman!

    I am glad that you are feeling better. I just had my first infusion two days ago and am patiently waiting to feel better. I am in the medical field and I have been anemic for the past 5 years. I have had doctors that I work with look at my blood work and have seen other practitioners and everyone just said that I was just slightly anemic. I finally reached point that I couldn't keep going and demanded that something be done to make me feel better. By now my ferritin level was two and my iron level was 17. The hematologist wanted to know how it got so low!!! I told him no one listened to me. I had been to a cardiologist for the extreme rapid pulse rate and abnormal EKG's, gyn for bleeding, internal medical dr. for the anemia and NO ONE DID ANYTHING!!! Excuse me for being angry but I actually work in the medical field and still couldn't get anyone to listen. I am scheduled for two more infusions and can't wait!!! I have had a headache everyday of my life for years...there is a light at the end of the tunnel.

     
    Old 03-17-2007, 03:30 AM   #14
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    Re: After Iron IV - I feel like a new woman!

    I had my first and also the last iron infusion on Friday. Now I realised achy everywhere is the side effect! I called my gastro Dr this morning, I was in tears on the bed. She said was not related to the iron infusion. The pain in my upper abdomen comes and goes. I took panadol since yesterday when I came back. They induced my migraine headache there. If I complaint one more time of the fuzzy vision (digital vision lost signal), they'll pull out everything and finished! I didn't complaint and stayed with it. The last bit, I got chest pain and tightness badly. I stood up and walked around, lean on the wall and breath. I make it all through by hard time. How come everyone thought it is the "Super boost drips" and it turn out into my "Tear drips"!

    I haven't felt and experienced anything change so far. Just whole day with chest/upper abdomen uncomfort and SOB. Do anyone know why they've to use so much sodium chloride to flush? My kidneys unable to stand.... it hurts!

     
    Old 03-18-2007, 04:08 PM   #15
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    Re: After Iron IV - I feel like a new woman!

    Hi Mom, glad to know you're doing better. I had my first Ferrlicit IV this past week and I do feel better already. For the rest of the day after the IV I felt sluggish and really tired but I don't know if that's a side affect or me just feeling like I normally do. But I am definitely looking forward to the rest of my IV sessions.

     
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