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  • Anemic, but WHY?

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    Old 10-28-2014, 10:50 AM   #1
    ceci52
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    Anemic, but WHY?

    I've been severely anemic for several years. I had my first IV iron infusions when I was 8 months pregnant, two years ago. I've been anemic ever since.

    July 2014
    HGB 8.9
    HCT 29%
    Ferritin 2.7
    Serum Iron 6
    Saturation 1.3
    TIBC 459
    IBC, Unsaturated 453

    Oct 2014
    HGB 8.1
    HCT 26.9%
    Ferritin 3.0
    Serum Iron 7
    Saturation 1.6%
    TIBC 448
    IBC, Unsaturated 441

    I'm depressed, moody, and exhausted all of the time - beyond single mom, chasing after a 2 year old tired. I can sleep 12 hours and wake up exhausted. My hair falls out by the handful, I have numbness in my feet and calves in the morning, always cold and occasionally I have numbness in my middle & ring fingers on my left hand and tremors in my right arm. Thyroid always comes back normal, but sister has Graves disease and mom has hypo-T. Also family Hx of Crohn's/colitis, rheumatoid arthritis and lupus, though the docs don't seem concerned about autoimmune. I've been on birth control and so I don't have a period anymore. I had hemorrhoid removal in Aug and while I do continue to have some minor bleeding 2-3x week (before surgery I had bleeding 4-6x/wk), I'm not convinced that this bleeding could be the cause for all of my symptoms.

    I should see my hematologist in the next week. I'm afraid that it will just be another round of iron infusions and I'll be sent on my way. What questions should I ask? What should I be looking for?

    Appreciate any advice you have to share.

    Last edited by ceci52; 10-28-2014 at 10:52 AM.

     
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    Old 10-28-2014, 01:19 PM   #2
    worrywort
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    Re: Anemic, but WHY?

    Quote:
    Originally Posted by ceci52 View Post
    I've been severely anemic for several years. I had my first IV iron infusions when I was 8 months pregnant, two years ago. I've been anemic ever since.

    July 2014
    HGB 8.9
    HCT 29%
    Ferritin 2.7
    Serum Iron 6
    Saturation 1.3
    TIBC 459
    IBC, Unsaturated 453

    Oct 2014
    HGB 8.1
    HCT 26.9%
    Ferritin 3.0
    Serum Iron 7
    Saturation 1.6%
    TIBC 448
    IBC, Unsaturated 441

    I'm depressed, moody, and exhausted all of the time - beyond single mom, chasing after a 2 year old tired. I can sleep 12 hours and wake up exhausted. My hair falls out by the handful, I have numbness in my feet and calves in the morning, always cold and occasionally I have numbness in my middle & ring fingers on my left hand and tremors in my right arm. Thyroid always comes back normal, but sister has Graves disease and mom has hypo-T. Also family Hx of Crohn's/colitis, rheumatoid arthritis and lupus, though the docs don't seem concerned about autoimmune. I've been on birth control and so I don't have a period anymore. I had hemorrhoid removal in Aug and while I do continue to have some minor bleeding 2-3x week (before surgery I had bleeding 4-6x/wk), I'm not convinced that this bleeding could be the cause for all of my symptoms.

    I should see my hematologist in the next week. I'm afraid that it will just be another round of iron infusions and I'll be sent on my way. What questions should I ask? What should I be looking for?

    Appreciate any advice you have to share.
    Hi, I have been struggling with low ferritin for a long time. Mine is currently 30, took forever to get to that though. I just take oral iron. My hematologist tested me for celiac, lupus and other auto immune stuff. I had to have a colonoscopy to rule out crohns and any other bleed. You must ask for tests!! I have heavy periods so pretty sure that is what causes me to be low, also I don't eat meat. Please keep us posted. Even at my ferritin being 30 I still feel crappy and my hair still falls out.
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    Old 10-29-2014, 03:15 PM   #3
    ladybud
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    Re: Anemic, but WHY?

    I definitely think celiac disease should be considered, as it causes poor absorption of iron, and also vitamins, particularly Vit D, B12 and folate, which could relate to your numbness in fingers, etc. All those can be tested on blood (serum), although celiac disease may require an endoscopy with biopsy of small bowel, if antibodies are negative. I would also wonder if you have hemolytic anemia, where antibodies attack your red cells. This can be tested by a Coombs test. You might discuss with your hematologist testing for these things, so deficiencies can be supplemented. If anemia is hemolytic, more tests need to be done for lupus, as that is one of the problems that can occur with it. You do have a strong family history of autoimmune disease, so I wouldn't let any Dr. just dismiss the idea that you might have one.

     
    Old 10-30-2014, 02:15 PM   #4
    ceci52
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    Re: Anemic, but WHY?

    Frustrating visit today. I didn't even get to see the hematologist, only his nurse. Decided course of treatment is weekly iron infusions for a month along with weekly labs. Referrals to gastroenterologists, endocrinologists, etc. were put on hold until after I have my infusions. The reasoning was that the iron deficiency would skew any other workups. More labs done today, including a full thyroid panel; they didn't seem receptive to doing even some preliminary labs for autoimmune causes. Should have thyroid panel next week.

    Labs today:
    HGB 8.9
    HCT 29
    MCV 64.8
    MCH 19.8
    MCHC 30.5 RDW 18.6
    PLT 409
    Total Protein was borderline high (8.3 - top end is 8.2)
    Globulin borderline high (4.1 - top end is 4.2)

    Ladybug: I was curious about your thoughts on hemolytic anemia. Was there something in my labs that led you to that conclusion? I find it difficult to make sense of the lab results. Everyone keeps saying that I'm anemic (DUH!!), but nobody is saying why. And, it seems that nobody evens has an idea for why -- or maybe they just aren't saying so right now?? Blah!

     
    Old 10-31-2014, 09:50 AM   #5
    ladybud
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    Re: Anemic, but WHY?

    Nothing in your labs suggest hemolytic anemia, but it can occur in autoimmune disorders, like lupus, and it would be part of an anemia work-up to rule it out. A retic count would be high and Coombs test positive. You are clearly iron deficient, since MCV is so low, which means your red blood cells are small). Your RDW is high, which means your cell size varies more than usual. Your ferritin (stored iron) is rock bottom. So low iron comes from 3 things: blood loss, sometimes obvious sometimes not, diet lacking in iron, or iron isn't absorbed in GI tract, like in celiac disease. Anemia of your level is moderately severe, and the cause needs to be sought. Iron transfusions just treat it without treating the cause. Perhaps your PCP would do some antibody tests for autoimmune disorders, including celiac tests and lupus tests, if your hematologist won't.

     
    Old 11-03-2014, 01:24 PM   #6
    ceci52
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    Re: Anemic, but WHY?

    Had my first infusion today. No complications except for a little queasiness. I had labs last Thursday and my HGB was 8.9; today it was 8. The hematologist strongly recommended a transfusion, but said the decision would be up to me since I'm right on the "borderline" for when he recommends transfusion. Does anyone have any experience with this? I wasn't given much detail except that I would be sent to the hospital to be typed and crossed, and then the day of the procedure I would get the blood products and "other meds" to ensure I didn't have a reaction. Not sure what the other meds are or what kind of effects I might experience. Does anyone have experience with blood transfusions? Also, I'm guessing if my HGB dropped as quickly as it did that my IDA must be a result of blood loss rather than absorption issues. Does this sound about right to you all?

     
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