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  • Still anemic...help!!

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    Old 08-12-2003, 08:12 PM   #1
    amwood
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    Unhappy Still anemic...help!!

    Well, I saw my doctor today to go over my most recent labwork and my hgb and hct are going down again. This is after receiving a few IV iron infusions and for a little while things started to go up, then back down, then I had a couple more infusions and things started to go up, and now things are going back down again. Of course, throughout all of this I've had 5 different GI tests done since I've tested positive several times for hidden blood in my stool. They still haven't found the cause/source of bleeding, although they seemed to have it narrowed down to the small intestine. For now, my doctor has told me not to exercise (and I'm usually pretty active) until they find out what's going on. She's going to talk with my hematologist and GI doctor and see what they can come up with.
    I don't know what else they can do...I've had a colonoscopy, endoscopy, small bowel series, nuclear medicine study, and a capsule endoscopy. I was wondering if anyone else out there has been in this position, and what other tests they did? I'm really frustrated...not only because I'm not supposed to exercise, but this has been going on since December 2002...I'd like to find out what the problem is and get on with my life! Any thoughts/suggestions/advice would be much appreciated. Thanks

     
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    Old 08-13-2003, 12:47 PM   #2
    QuietStorm4000
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    Sorry, Amwood
    I can't offer any. Sounds like you're seeing all the experts. It's up to them to figure it out. I'd go nuts if my dr.s told me to quit working out! My guy told me to just go ahead BUT my levels were never as bad as yours. The worst I scored on my Hgl was a 10. I go up and down as well but again not as wildly as do you. All I can offer is my good wishes and support.
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    Old 08-13-2003, 01:35 PM   #3
    Jenlynmar
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    I'm just wondering what, if any , medications you are on. My daughter has hemolytic anemia..can not find the cause...and needs monthly transfusions.
    I don't know if this ever came up on this board before, but please consider this warning........NEVER take statin medications if you are anemic or have lymphatic or liver problems. Because her dr. suggested lipitor..........she now needs transfusions. Her anemia was controlled with Interveneous Immunoglobuln. She had all kinds of tests and it's now 7 years later after a spendectomy and prednisone , cytoxin, rytuxin & thalidomide. Nothing helped. Please be aware of the fact statins are BAD for blood/Lymp disorders and certainly if you have an iron overload.......you do NOT want a statin!
    Sincerely, Mary Ann
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    Old 08-13-2003, 08:56 PM   #4
    Byrd
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    Amwood, What is your nationality? Have you ever had stomach surgery?Do you have any immune disorder? Byrd.

     
    Old 08-13-2003, 09:18 PM   #5
    amwood
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    Thanks for your responses...sorry for venting a little in my earlier post! To answer your questions, I'm not on any medications other than birth control, and I have pretty light cycles. I've never had any surgeries (not even a tooth pulled!), and when they did the colonscopy they checked for malabsorption problems and didn't find anything.
    With my last set of lab results my doctor said that my white blood cell count is also low...I'm not sure if this is a problem, other than the fact that it puts me more at risk for getting sick. I don't really know what would cause the white blood cell count to drop? When I first saw my hematologist he said he'd give me the iron infusions to see if my hemoglobin would go up, and that if it didn't go up he would then do a bone marrow biopsy. My levels went up, although not as much as he thought they would, but he said that indicates my bone marrow is working. What other "problems" could he look into other than my bone marrow not working?
    Also, my ethnicity is a mix of Irish, Polish, and Czech. Again, thanks for your input...any advice or thoughts are really appreciated!

     
    Old 08-14-2003, 04:25 PM   #6
    Brenda51
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    Hello everyone. I'm new to this message board although I have been reading for sometime. I too have anemia that has not responded to iron supplemnts (1 year), iron infusions, and blood transfusion. My Hgb would come slightly up then back down. I am now on Procrit injections once weekly. My Hgb is coming up 1 point each week. I am at 10.3 right now. I have had a total of eight so far. I was in remission for non hodgkins lymphoma, until one year ago when I relapsed. I had chemotherapy in 97. My doctor does not think the anemia is caused by the lymphoma. I also have chronic bladder infections for which I do think was caused by one of the chemo drugs. I cannot receive the lymphoma tratment Rituxin until my Hgb comes up because the Rituxin causes blood counts to fall. I hope the Procrit continues to work. Hope you can find something that will bring yours up.
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    Old 08-14-2003, 09:01 PM   #7
    amwood
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    Do they only give Procrit for cancer-related anemias? I had thought I heard that somewhere, but I'm not too familiar with Procrit so I could be way off. I wonder why my hematologist hasn't recommended that yet...
    I'm looking into seeing a new hematologist for a second opinion - my boss was able to pass my info to the chief of staff at Stanford Med Center, who in turn gave him the names of two hematologists that are supposedly pretty good there. I'm going to do a little research on them and then go from there...I'm not sure why, but I'm moving a little slow on this...even though I want all this to be over (or at least have a solution), I almost just don't want to know what's wrong!

     
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