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Ongoing Anemia...

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Crohn's Disease
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Posted 3/1/2008 9:53 PM (GMT 0)
Hey all! Well I got a call from my docs nurse practitioner and she was worried about my blood counts because my hematocrit was 29.6 and my hemoglobin was 10.2. She had me get more blood work done the night I talked to her to see if it was better or worse. I talked to her again, and she said she wasn't as worried because my hematocrit was 30.2, but my hemoglobin is now 9.6. Needless to say I am symptomatic: crazy fatigue, crave ice all the time, pale, tired, and a few times my heart has done some weird flutter deal for a few seconds. Basically i feel a little off. I have a follow up with my doc next thursday...to chit chat about what could be causing this. Im not bleeding, no vomiting, no menstrual cycle, etc. I just dont know where I am losing blood. Any help would be great!

 

Posted 3/1/2008 11:48 PM (GMT 0)
I just met with a hemotologist for the first time while I was in the hospital. I had an iron infusion to give me a boost. He said he wants to meet with me I think every week or so to give me a shot of something...and wants to prescribe folate? Sorry I can't be more specific...coming out of the hospital I was bombarded with lists of diet sheets, medications, etc. so my parents are helping me keep track of everything cause it's hard to remember all of these names. If I get any insight on the situation that might be helpful I'll post again! I can't remember all the numbers the doctor spewed out, but I think my count was around 8 1/2 and he said that was too low he thought. Feel better!
Posted 3/2/2008 2:52 AM (GMT 0)
I am anemic too. As of midweek my hemoglobin was 9, which is down from 10 two weeks ago. I found this out in the emergency room (I went for dehydration). I have obvious GI bleeding though so I know where it is coming from. I am extremely tired, and I can hardly walk without feeling like I can't breathe. My heart rate is also extremely high. It is not unusual for it to be in the 150s resting. I feel that I need a blood transfusion, but none of the doctors seem to think I do. Anyway, I understand how you feel. Take care.
Posted 3/2/2008 6:01 AM (GMT 0)
Being anemic stinks! When I left the hospital a few years ago my hemoglobin was down to a 7. I still don't know why they didn't give me some blood. I struggled for a long time trying to get back to normal on my own (with iron pills). I couldn't breath good, I would get out of breath just walking in my house. I was soooo tired, always sleeping. Of course this was from a major GI bleed.

Have they done any stool sample tests yet? Sometimes we can be bleeding, yet it's "invisible" in our stool. I just had some blood work, I was feeling tired and having heart palps so I figured I might be anemic. But that came back good. Now they are testing my thyroid (again). Hope they figure things out and you starting feeling better soon!

Posted 3/2/2008 6:12 AM (GMT 0)
Yeah I had stool samples done and apparently for me everything was okay. You know though, now that you mention the breathing...a few times lately I've gotten like this sensation that my heart is racing and that even as I'm breathing deeply and not struggling for air..my heart is still racing and the breathing isn't 100% normal. Does anyone else get that? I thought it was just my nerves but now I'm a little worried. If it persists I guess I'll have to say something =(

Posted 3/2/2008 7:45 PM (GMT 0)

Being anemic drives me crazy.  I too fight constantly with it and I have to admit I just stubborn.  3-4 years ago, it was the 7.whatever that forced me to the hospital for my Crohn’s diagnosis.  Since then, i think I think the highest it gets is 10ish.  I had a couple of blood transfusions the times I was in the hospital and good lord it hurt ALOT (which I think has subconsciously scared me away from my doctor and her instance of blood work.) 

Every time a new doctor sees those numbers they want to immediately send me to the emergency room.  At some point, I just feel like I need to live with it but I wonder.... So, has anyone else had horrible blood-transfusion experience?  My doctor has warned if I don't get better she is going to recommend and iron transfusion - what is that like?  I think I have been avoiding going back to see her because I can tell I am running low...so freaking tired, lips have no color, wheezy/dizzy, and the leg cramps are back....

Posted 3/2/2008 8:03 PM (GMT 0)
I have had iron infusions in the past. It took almost an entire day for the infusion, but they had to slow the rate down so that it was hardly dripping in my veins at all because I started having a reaction. After the infusion though I felt so much better. At the time, my hemoglobin was around a 4 or 5. Iron infusions also have a benefit over iron pills, though your doctor may ask you to take them anyway. At least iron infusions don't wreck havoc on your digestive tract. Take care.
Posted 3/2/2008 8:47 PM (GMT 0)
I actually didn't have a problem with the iron infusion. I have what's probably a really stupid question though...what's the difference between an infusion and a tranfusion? Sorry for my ignorance. confused
Posted 3/2/2008 10:19 PM (GMT 0)
I was anemic for years and had a hard time taking regular iron pills-I also wasn't absorbing iron from pills and I was eating a very high iron diet with no differnce.
I made two changes that helped a lot.
First I now take chelated iron-it is easier for the body to absorb and does not give me the GI symptoms iron sulfate gave me.
Second I take lots of vitamin C all day long. Vitamin C is neccessary for your body to absorb iron. I just use the Vitamin C throat drops several a day.
That brought my blood levels closer to normal and helped with the fatique and dizzyness I had all the time. I also had the weird heart flutter but that hasn't happened in years now.
Sj
Posted 3/2/2008 10:33 PM (GMT 0)

An infusion  is IV iron. It drips slowly over a period of hours.  It typically takes 1-2 weeks for your body to absorb it fully and put it to work.  A transfusion is blood.  I have had both, although the transfusion was given during surgery so I don't know how long it took, if there was discomfort, etc. as I was heavily sedated for days afterward! 

You can be bleeding and not see it in your stool and/or you may just not be able to absorb it properly in your GI tract, which was typically my problem.  The IV iron can make a huge difference.  IF you are really low, it may take more than 1 infusion to boost you back up.  Your hematologist will want to monitor you carefully by looking at your iron stores periodically (ferretin levels in your blood).  When I dip low, he usually calls me in for an infusion.  Infusions can allow you to rebuild your iron stores up vs. receiving donated blood via a blood transfusion (but will boost you more quickly).

The first time I found out I was anemic (at a 7.0) I didn't realize it!  My doctor noticed my pale gums and suspected.  I was out of breath and exhausted all the time--just figured I was out of shape/getting old!  Now, I know my signals and try to stay on top of it.  I have never been able to tolerate oral iron pills so it is infusions for me!

I hope you feel better soon!

Posted 3/2/2008 10:53 PM (GMT 0)

pattytx said...

An infusion  is IV iron. It drips slowly over a period of hours.  It typically takes 1-2 weeks for your body to absorb it fully and put it to work.  A transfusion is blood.  I have had both, although the transfusion was given during surgery so I don't know how long it took, if there was discomfort, etc. as I was heavily sedated for days afterward! 

You can be bleeding and not see it in your stool and/or you may just not be able to absorb it properly in your GI tract, which was typically my problem.  The IV iron can make a huge difference.  IF you are really low, it may take more than 1 infusion to boost you back up.  Your hematologist will want to monitor you carefully by looking at your iron stores periodically (ferretin levels in your blood).  When I dip low, he usually calls me in for an infusion.  Infusions can allow you to rebuild your iron stores up vs. receiving donated blood via a blood transfusion (but will boost you more quickly).

The first time I found out I was anemic (at a 7.0) I didn't realize it!  My doctor noticed my pale gums and suspected.  I was out of breath and exhausted all the time--just figured I was out of shape/getting old!  Now, I know my signals and try to stay on top of it.  I have never been able to tolerate oral iron pills so it is infusions for me!

I hope you feel better soon!

Ohhh thanks for clarifying! Yeah I had the iron infusion while in the hospital so I guess the hematologist will be monitoring me when I see him. I have to make an appointment for this week for some shot I think he was saying and I'm guessing more bloodwork. Blehh I hate needles and blood with a passion..I was always terrified. It's actually a bit sad how I'm getting used to it now since I have bloodwork done so often (doesn't mean I hate it any less though, lol!)
Posted 3/16/2008 11:01 AM (GMT 0)
my iron is low too think my ferritan level is 11 atm wats the dif between feratin and hemiglobin?? i think im going to have a infusion but shld i had a stool sample done just in case its from bleeding or wld they of notice that in my surgery stupid questions i knw.
Posted 3/16/2008 4:54 PM (GMT 0)
hmm i'm new to this stuff with the iron and hematologist so i'm not really sure but i know they did like 4 or 5 stool samples the week i was in the hospital and they were all okay. i'd say have them done, can't hurt i guess.
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