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  • unexplained anemia

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    Old 04-17-2010, 03:49 PM   #1
    mysteriousrbc
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    Question unexplained anemia

    Any suggestions would be welcome. First time posting. Just got out of hospital (again) after a week (again) with unexplained anemia. Hemoglobin was 72, had a series of blood transfusions that brought it up to 90. Had GI scopes, ultrasounds, xrays, etc. but NO evidence of bleeding internally or externally. Retic.s show that I'm producing red blood cells but they're mysteriously disappearing. Now having serious heart problems. Off work 3 months, incapacitated, no physical exertion is possible. I'm so tired of Dr.s saying "It's an interesting case" or "It's a mystery". Next week will be bone marrow testing to make sure rbcs being produced. Frustrated. Tired. Anybody out there?

    Last edited by mysteriousrbc; 04-20-2010 at 05:33 AM.

     
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    Old 04-20-2010, 09:04 AM   #2
    gwood
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    Re: unexplained anemia

    Hi,

    I have a similar problems so not much help. I'm pretty much a medical mystery - I do have GI bleeding but have done for at least the last 12 years so it's not the cause. My anaemia is not related to iron deficiancy as it's normocytic and my ferritin levels are all normal. I'm pretty much at my wits end. I also have a low white blood cell count. This has been ongoing since last year with my hemoglobin dropping to 8.4- iron tablets don't work and the only thing which has helped my numbers creep up very slowly is IV iron. Apart from full blood counts and a few tests for rare disorders no other further investigations have been done and my doctor only wants to see me again in July as they are extremely frustrated about not been able to find out the cause. I really wish I had the answers but I don't hold up much hope of a cause been found in my case - on the bright side I keep telling myself that no one has ever died from anemia.

     
    Old 04-20-2010, 04:18 PM   #3
    mysteriousrbc
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    Re: unexplained anemia

    Thanks for your response. Sounds like we're both living with frustration. I'll hang in if you will

     
    Old 04-21-2010, 06:29 AM   #4
    gwood
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    Re: unexplained anemia

    Indeed we are and I totally get what you mean about been tired of been referred to as an 'interesting case'. If my hemotologist refers to me an 'unusual case' or uses the words 'maybe', 'possibly', 'could be' one more time I will cry

     
    Old 04-28-2010, 06:35 PM   #5
    NoIron
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    Re: unexplained anemia

    I have been dealing with same thing for 10 years. My Hemoglobin averages about 9 but drops to 5's often. I live on Infed infussion every 6-8 weeks. This past two months have been really bad with 3 blood transfussions and 3 Infed inffusions. I have had every GI Test with nothing ever found. Very normal to light periods. Last year I went to University of Miami to see the "best of the best". They did 27 different test and found NOTHING.

    I am working, but not functioning in my job well. I come home and lay down not able to keep up with anything. It seems to my family that the more I drop the worse my mental state becomes. I do feel like I live in a fog when I drop down below hemoglobin of 7.

    Have you found out why you are so low? How is your family coping with it?

     
    Old 05-03-2010, 11:20 AM   #6
    mysteriousrbc
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    Re: unexplained anemia

    Thanks for your response, NoIron. No results yet from the bone marrow tests (which were ridiculously painful). So no answer to the low hemoglobin mystery. So far my iron and b12 seem fine, which is weird in itself. The family is adjusting to the new me (which I still hope is temporary). They come hang out in my bed and do homework or watch tv. Thank God for my husband, who pretty much does everything that's getting done. I'm trying to stay positive, but I do have my moments. Depression is a problem and I can get very grouchy. Usually he rolls with it, but says it's sometimes hard to remember that I'm sick (I look pretty normal when I'm not exerting myself). Housework just doesn't happen, the garden isn't weeded, cooking isn't happening like it normally does. Learning patience, though

     
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