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    Old 05-14-2008, 01:50 PM   #1
    LinuxRocks
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    Question New here, and new to anemia, too

    Greetings,

    In a nutshell, I've become anemic and we don't know why. After a lot of lab tests we know that it's iron deficiency anemia. My primary doc says that the labs indicate internal bleeding/blood loss, and she wants me to have a colonoscopy; my rheumatologist also said she thinks we need to start with a colonoscopy. That's fine, but the occult blood tests have all been negative.

    Anyway, I had a hysterectomy at 22, so it's been a VERY long time since periods could have anything to do with this. Here are some of my most recent lab values:

    Iron and total iron, % saturation --> 10 (low)
    Reticulocyte count, automated --> 4.3 (normal)
    Reticulocyte count, absolute --> 193070 (very high)
    Ferritin --> 7 (low)
    B12 --> 309 (normal)
    Hemoglobin --> 9.7 (low)
    Hematocrit --> 29.7 (low)
    RBC count --> 4.25 (barely normal)
    MCV --> 70 (low)
    MCH --> 22.7 (low)
    RDW --> 18.0 (high)
    Sedimentation rate --> 36 (high)

    Over the past 4 years I've run around in circles trying to sort out a plethora of health problems, mostly mysterious, and almost ALL without ever reaching a definitive diagnosis. This anemia is just the latest in a very long string, and I'm anxious to get it figured out. Meanwhile, I feel exhausted physically and depleted emotionally.

    For the past few weeks I've been taking 325mg X 3 daily of iron (OTC), but the effect on my gut has been REALLY bad. We're now considering iron injections, but haven't started them yet.

    As for my actual questions!, I'm not even sure what to ask. Ideas, perhaps, as to what's going on? Like, how is it possible to be bleeding so severely in the colon that it's made me this anemic, yet there are NO SIGNS of blood in the occult fecal blood tests? It's been under a year since we first started noticing my falling hemoglobin and hematocrits, and it's only been in the last month or so that things have reached what my doctors are considering a crisis point. (I have to admit that when I was first found to be anemic, my primary doc sent me to a GI doc because she thought a colonoscopy was in order; that's exactly what he recommended last summer, but I didn't have it done then.)

    Sorry for rambling, especially in a first post! Any advice, suggestions, or insight will be greatly appreciated.

    Last edited by LinuxRocks; 05-14-2008 at 08:54 PM.

     
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    Old 05-14-2008, 03:15 PM   #2
    ChristineVA
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    Re: New here, and new to anemia, too

    The first step, which you are doing, is to get the GI tract checked out. I agree with the colonoscopy. You can bleed intermittently and it may not show on the occult.

    I'm sort of surprised that they aren't doing an upper endoscopy with the colonoscopy. Many people have stomach irritation and don't know it. When I went in for my colonoscopy, I asked my doctor to do the upper GI just because I had been taking Prilosec for so long for acid reflux. Now, acid reflux does not cause bleeding but I just wanted my stomach looked at. Lo and behold, I had a pretty bad case of gastritis with fresh bleeding in my stomach. So, you might want to ask to add that test on so as not to miss anything in the GI area.

    Since your sed rate is high, that is an indication of inflammation in your body. The increased sed rates sometimes indicate an autoimmune disorder and some autoimmune disorders cause destruction of red blood cells which mimics iron deficiency anemia. Or you could have an elevated sed rate for a totally innocent reason. But I think that is something that you need to explore further.

    One of the tests my doctor performed was a C-Reactive Protein test (CRP). You mainly hear about this test in regards to heart disease, but it is actually an excellent test at showing inflammation ALL over the body and has replaced the sed rate taste for accuracy. Unfortunately, it doesn't tell you where the inflammation is. My doctor ran this just to make sure I had no inflammation--or if I did, we would start looking at autoimmune disorders.

    I certainly can understand your concern, especially since menstruation is no longer occurring. You definitely have a "process" going on. Either loss of blood or destruction of red blood cells.

     
    Old 05-14-2008, 04:37 PM   #3
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    Re: New here, and new to anemia, too

    Thanks for the great reply, Christine. Just to clarify, I'm seeing the GI doc this Friday [for the first time since last summer], and he'll have all my labs and everything, and we'll discuss a course of action. I'd thought about the upper endoscopy as well, although I had one only 2(?) years ago and it found nothing but a benign lipoma in the duodenum.

    Regarding the sed rate: It was much higher several months ago. In fact, the reason my primary sent me to a rheumatologist in the first place was because of my very high sed rate (upper 80s, if I remember correctly). Since I've been seeing the rheumatologist it's actually gone down a good deal, although it's spiked back up a little with these most recent labs. She has confirmed the presence of rheumatoid factor, and she has some...I don't know, suspicions? about Lupus, but I've previously had Lupus ruled out, so I don't know. Like I said, it's been a FOUR YEAR runaround of mystery ailments and very little positive identification--which is frustrating, to put it mildly.

    As of last week's appointment with my rheumatologist, she pulled me off the anti-inflammatories (most recently Relafen, preceded by Voltaren) because they weren't helping the pain in my back enough; she put me on a short course of prednisone (I can't stay on steroids long-term because of osteoporosis). Anyway, the sed rate went down as the anti-inflammatories took effect, so I'm not sure what's up with it creeping back up a little now (prior to switching to prednisone).

    Last edited by LinuxRocks; 05-14-2008 at 04:40 PM.

     
    Old 05-14-2008, 05:26 PM   #4
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    Re: New here, and new to anemia, too

    Hmmm...I'm thinking that this sed rate issue may be the culprit.

    The only reason I know this is that one of my doctors has a fairly serious form of rheumatoid arthritis. He told me that early on in his diagnosis, they kept telling him he had iron deficiency anemia. He took iron for awhile, to no avail. They finally figured out that it was his RA that was causing the anemia (which "looked" like iron deficiency anemia). Turns out that he has the type that you'll see labeled "anemia of chronic disease" and it's not treated with iron. Not sure how he keeps it under control but I do know that it is 100% related to his RA.

     
    Old 05-14-2008, 05:41 PM   #5
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    Re: New here, and new to anemia, too

    Quote:
    Originally Posted by ChristineVA View Post
    Hmmm...I'm thinking that this sed rate issue may be the culprit.

    The only reason I know this is that one of my doctors has a fairly serious form of rheumatoid arthritis. He told me that early on in his diagnosis, they kept telling him he had iron deficiency anemia. He took iron for awhile, to no avail. They finally figured out that it was his RA that was causing the anemia (which "looked" like iron deficiency anemia). Turns out that he has the type that you'll see labeled "anemia of chronic disease" and it's not treated with iron. Not sure how he keeps it under control but I do know that it is 100% related to his RA.
    This is very interesting.

    I actually researched "anemia of chronic disease" and then spoke to a couple of my doctors about it in the last two weeks or so. One of the mysterious illnesses we've been dealing with for several years now is Carcinoid syndrome, although we've never been able to locate a primary tumor. The Social Security Disability judge was satisfied with the evidence, though, and included that in his favorable decision on my SSDI claim in January. Carcinoid syndrome is a chronic illness that can cause all sorts of problems, and perhaps THAT is the "chronic disease" that this anemia is part of.

    As for the rheumatoid factor, my rheumatologist has said that it's not very pronounced (I don't have those labs handy right now), but she's leaning toward changing my treatment to be rheumatoid arthritis based, even though my back pain (degenerative spondylitis) is not typical of rheumatoid arthritis. Hence the short course of steroids while she decides on which way to go forward from here.

     
    Old 05-14-2008, 05:49 PM   #6
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    Re: New here, and new to anemia, too

    Oh yes, I've heard of carcinoid. I think I ran across it when research my own thyroid cancer. So, is that truly confirmed for you since they cannot find the tumor? I guess they can confirm it will lab values?

    At any rate, I do believe that you are at least following the proper course of action with the colonscopy. Once you get the real obvious culprits out of the way, you can put that aside and move onto the other issues.

    Whether it is a blood loss problem or from some other disease, I'm sure that with your blood counts, you have GOT to be feeling very badly. I know how awful I felt when mine were down in the "11" range. My ferritin got as low as "5".

     
    Old 05-14-2008, 07:17 PM   #7
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    Re: New here, and new to anemia, too

    you have microcytic(small red cell indicated by low MCV), hypochromic(pale red blood cells/decreased hemoglobin per red blood cell as indicated by your low MCH) which in itself is classic for iron deficiency anemia but not diagnostic .. but your iron studies are classic for iron deficiency anemia ... you have a low saturation % and your ferritin is sub 10 .. the ferritin being less than 10 is highly sensitive/specific for Fe2+ deficiency anemia(what would be interesting to know is exactly what your serum iron and TIBC actually were ) ... your RDW(the red cell distribution/width) is likely high because your have a lot of different size red blood cells(your mature cells are likely small but the young ones your bone marrow produces are large, the overall effect leads to an increased RDW) ... also you mentzer index, which is the ratio of your red blood cell volume over the red blood cell count (MCV/RBC), is another means of determining likelihood of iron deficiency anemia, and your is 16, which anything >13 is suggestive of iron dificiency anemia

    what's not so classic is that your reticulocyte index, which is the needed calculation in the setting of anemia to figure out how your bone marrow is responding is higher than you would normally expect with iron deficiency anemia, from the numbers you give it should be approximately 2.8, and in iron deficiency anemia you would expect it to be <2 .. this elevated index suggest that your bone marrow has adequate enough iron stores to produce young red blood cell(although this maybe due to iron supplementation; just note for real iron deficiency anemia it takes about 6 weeks of supplementation to correct the anemia and about 6 months to replete your bone marrows iron stores); anyways, back to the index... elevated indices are usually seen when red blood cells are being broken(hemolyzed) or in acute bleeding problems .. any numbers for LDH, bilirubins, haptoglobin???


    in regards to the anemia of chronic disease, which has commonly been referred to now as ACI(anemia of chronic inflammation) ... it can often look like iron deficiency anemia but tends to be normal sized .. anyways, ferritin is what's referred to as an acute phase reactant, in other words if your body is inflammed, it's usually elevated ... and in ACI it's usually high, it would be unlikely to have only an ACI with a low ferritin, although you could have an iron deficiency anemia and an ACI simultaneously .. but again you should know that ACI is an anemia where you bone marrow does not produce a lot of young red blood cells, so the elevated retic index, again is not characteristic of an ACI or iron deficiency anemia .. other things that help is that with the ACI, your iron and TIBC should be low while in iron deficiency anemia the iron is low and the TIBC(total iron binding capacity) is high(this leads to the low % saturation = Fe/TIBC), so again it would be interesting to see what your Fe and TIBC actually are ...

    so with the data you presented, it seems like your PCP/rheumatologist are barking up the right tree .. to initially work up your anemia

    in regards to your ? rheumatoid arthritis, did your rheumatologist send off antiCCP lab or globulins, what was your ANA any positivity or pattern of staining ??

    best of luck

     
    Old 05-14-2008, 11:58 PM   #8
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    Re: New here, and new to anemia, too

    Thanks for the very informative/comprehensive reply, hermes.

    I don't have everything handy right now, but here are some of the values you mentioned:

    Iron and total iron binding capacity:
    Iron, total --> 42
    Iron binding capacity --> 425

    Bilirubin, total --> 0.5

     
    Old 05-15-2008, 04:54 AM   #9
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    Re: New here, and new to anemia, too

    Quote:
    Originally Posted by hermes370 View Post
    also you mentzer index, which is the ratio of your red blood cell volume over the red blood cell count (MCV/RBC), is another means of determining likelihood of iron deficiency anemia, and your is 16, which anything >13 is suggestive of iron dificiency anemia
    hermes,

    Are you sure this calculation is correct? I currently do not have IDA and I just put my figures in this formula: MCV = 93 and RBC = 4.13 which gives me a score of 22. This would suggest IDA but I no longer have it.

     
    Old 05-15-2008, 03:03 PM   #10
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    Re: New here, and new to anemia, too

    ChristineVA

    the mentzer index formula is MCV/RBC, but it's only a tool that useful in further classifying different forms of anemia ... it's an experimental derived observation with good theoretical grounding, but it's not 100% sensitive/specific for diagnosis anemia, which is why it's only one of many tools people use to figure out what type of anemia a person may have ...

    in your case, your MCV(red cell volume) falls within the n/l range, already making iron deficiency anemia less likely, unless you have reasons for an anisocytosis(variable red blood cell size); just remember people rely more on iron studies in addition to ferritin to make the diagnosis of iron deficiency anemia, it's just that when you get someone's CBC and notice an anemia, the mentzer index is a quick means of figuring out if someone has anemia suggestive of iron deficiency(when greater than 13) or thalassemia(when 13 or less) ... hope that helps

     
    Old 05-15-2008, 03:12 PM   #11
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    Re: New here, and new to anemia, too

    LinuxRocks

    serum iron is on low side for a female and TIBC is high-normal, which goes along with iron deficiency, as does your low ferritin

    your Tbili isn't anything to write home about, beyond that its w/i normal

     
    Old 05-15-2008, 04:06 PM   #12
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    Re: New here, and new to anemia, too

    Quote:
    Originally Posted by hermes370 View Post
    ChristineVA

    the mentzer index formula is MCV/RBC, but it's only a tool that useful in further classifying different forms of anemia ... it's an experimental derived observation with good theoretical grounding, but it's not 100% sensitive/specific for diagnosis anemia, which is why it's only one of many tools people use to figure out what type of anemia a person may have ...

    in your case, your MCV(red cell volume) falls within the n/l range, already making iron deficiency anemia less likely, unless you have reasons for an anisocytosis(variable red blood cell size); just remember people rely more on iron studies in addition to ferritin to make the diagnosis of iron deficiency anemia, it's just that when you get someone's CBC and notice an anemia, the mentzer index is a quick means of figuring out if someone has anemia suggestive of iron deficiency(when greater than 13) or thalassemia(when 13 or less) ... hope that helps
    Thanks! After I read your initial post, I did some of my own research on the index and saw that the index number alone is not a diagnoses--just that in the face of anemia, being on one end or the other of the index can help you tell which type it may be.

     
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