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    Old 09-01-2013, 12:01 AM   #16
    VeeJ
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    Re: Confused on my ANA Titer results etc

    Hi. A more obvious explanation might be this: women who are pregnant or breastfeeding have higher iron and folate requirements.

    I'd start with the hematologist---get yourself a toehold. (Afterward, if he/she confirms some things then ships you back to a rheumatologist to rule other things in or out---well, so be it!) You need to get some solid findings established, otherwise you'll browse and worry until the cows come home. Somewhere there's a good doctor who can move you along, so I hope you turn that corner with your next appt. Rooting for you, V.

     
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    Old 10-22-2013, 06:40 PM   #17
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    Re: Confused on my ANA Titer results etc

    So...I got an appt for more bloodwork with the hemo. He is scratching his head too. Another doctor (functional medicine) suggested there is a methylation issue, so I am waiting for the results of my MTHFR SNP tests.

    My recent bloodwork doesn't show much of a change:

    TSH went from 1.17 to 0.95, but still in range
    RBC went from 34.6 to 32.6
    Hemoglobin 108 to 89
    Hematocrit 33.2 to 28
    MCV 96.2 to 86
    MCH 31.1 to 27.3
    RDW 274 to 346
    Alkaline Phosphatase 37 to 27
    Cholesterol 126 to 130
    Total Iron 35 to 20
    Iron Binding Capacity 208 to 376
    Ferritin 29 to 3
    B12 585 to 649
    Folate now 20.5
    DHEA sulfate 90

    Does any of that look troublesome or give any answers?

     
    Old 10-22-2013, 06:44 PM   #18
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    Re: Confused on my ANA Titer results etc

    Oh! Forgot to mention that my SCL-70 is negative, as is my Coomb's test.

     
    Old 10-27-2013, 02:29 AM   #19
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    Re: Confused on my ANA Titer results etc

    Meme, I got so confused trying to follow this, making me appreciate how YOU must feel! These tests don't track too well, prob. because they've been done by different doctors who ordered different tests each time. Also, many lack reference ranges, or even a simple indication of HIGH vs. LOW.

    So I think you need to impose some structure on your review. I'd chart all values---or, even easier & more to the point, ONLY the abnormals. Here's how I'd go about that:
    1. Photocopy each set of labs, or scan them to your computer. (This preserves a clean, readable copy of each.)
    2. On each set, highlight the abnormals.
    3. Then make a chart (spreadsheet or just a table) to plot the abnormals across time. In the columns: the test dates, in ascending order (= the dates your blood was drawn). In the rows: the names of every abormal test, plus the reference range for each.
    4. Now start plotting your abnormal results.

    Here are some you might scrutinize particularly... but I honestly doubt I noticed everything: you might find even more.

    Vit D: Is last value (24) a little low?
    RBC, Hemoglobin, Hematocrit, and RDW: The October 2013 values bear no relation to August 2013 values. Were different reference ranges used? Also, (a) are RBC and Hematocrit LOW on your last set? (b) Is RDW still HIGH on your last set?
    Total iron and Ferritin: These may be the most interesting values of all...? Once you get those all-important reference ranges on your chart, are these LOW? Levels? On which dates?
    ANA: Do you see any correlation between this & other abnormal values? e.g., is it increasing as other values, like maybe iron tests, drop?
    C-Reactive Protein: This may be high-ish, but I'm can't be sure because its reference range is missing.

    I'm only a patient (= dumb ), but your abnormals may cluster around your iron-related tests---you'll see when you re-org. After you do, please post your findings. Looking forward to hearing more, Vee

     
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    Old 10-27-2013, 08:06 AM   #20
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    Re: Confused on my ANA Titer results etc

    Meme, many of your labs show changes consistent with worsening anemia. If you look at your HCT, Hb, MCV, MCHC, iron, ferritin, they all have gone down considerably. iron binding capacity and RDW go up as blood count goes down. All of this is consistent with worsening iron deficiency anemia. I think the cause of the anemia is very important to investigate. You have to be either losing iron, such as in heavy bleeding, or not absorbing iron from your diet, or have a very iron deficient diet. Celiac disease (gluten related) is a common cause of iron deficiency anemia. I would make that a priority to check out. Your hematologist or PCP could run the antibodies for celiac disease, and if negative, a GI Dr could do a scope and biopsy. In the meantime, your iron needs supplemented, and may require more than oral supplementation. If you try oral first, be sure to take Vit C with it to enhance absorption.

     
    Old 10-27-2013, 08:52 AM   #21
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    Re: Confused on my ANA Titer results etc

    Meme, I'm wondering why the hematologst "scratched his head" instead of recommending tests such as Ladybug listed? If he's still waiting for labs to come back, that's understandable---but if everything is back and he's standing still, that wouldn't sit well with me.

    I suspect since your direct Coomb's was negative, that means AIA is unlikely---you should confirm with your doctor.

    Also, because your ANA has been positive in the past, I'd ask: which conditions featuring positive ANA comport with my findings and symptoms? (For starters, Ladybug's mention of Celiac makes huge sense to me, since ANA can be positive in Celiac.)

    Personally I probably wouldn't take iron supplements until I was greenlighted... but that's me. (My thought is that taking supplements might stymie your doctors' efforts to find the REAL reasons your iron is low.) Keep trying & keep us posted! Hugs, Vee

    Last edited by VeeJ; 10-27-2013 at 11:33 AM. Reason: typo (bad one)

     
    Old 10-27-2013, 04:09 PM   #22
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    Re: Confused on my ANA Titer results etc

    Oh I really want to cry this week about everything! Nothing is making any sense to me...as soon as I think it does and I might finally have an answer, something else comes along and changes my thinking.

    OK, let me see if I can answer your questions.

    Celiac came back negative. I know that you can still have a gluten sensitivity, but the test was negative.

    I'm guessing the hematologist scratched his head because I'm a pain in the butt patient and am not cooperating with textbook symptoms and bloodwork.

    AS far as iron goes, I have taken supplements and the tests still come back low. Same with vitamin D. I can have that test done in the middle of the summer, when I spend all day at the pool or outside, and it's still low.

    I have made an excel spreadsheet with all my labs and dates they were drawn, so if you think that would help clear the mud up, and can tell me how to post it, I sure will.

    Is it possible this is Lyme disease?

     
    Old 10-27-2013, 06:35 PM   #23
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    Re: Confused on my ANA Titer results etc

    I think given the fact that you have taken iron supplements with no improvement, you must have an absorption problem. Even though your celiac antibody tests came back negative, I would pursue getting a small bowel follow thru xray or scope with biopsy. Not everyone with celiac disease has + antibodies in serum. I really don't think this sounds like Lyme, but it can't hurt to rule it out since it is a blood test.

     
    Old 10-28-2013, 02:00 AM   #24
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    Re: Confused on my ANA Titer results etc

    Good morning. In addition to having more definitive Celiac tests, here are two other fronts you might investigate.

    But first, are you taking iron in pill form? Did you only start recently? I read that it takes awhile for pills to improve serum iron levels: those don't go up overnight.

    Iron is best taken on an empty stomach, if your stomach can stand it. Adequate Vitamin C is necessary for absorption. There are lists available of iron-rich foods, including suggestions about what foods to eat at same meal. And if you're a vegetarian, you have to work extra-hard on diet. ETC*. (*Meaning that's a partial & loose list that needs refinement. If you can't find enough useful tips, you could consult a nutitionist.)

    Women who have heavy periods & low iron levels are sometimes prescribed BC pills to lighten their periods.

    Main thing as you proceed is, how do you feel? (I just looked again thru all those labs & couldn't see how you feel!) But if you really start to slide, please consider giving another dr. a whack at this. My breakthrough came when I switched to a metro rheum, who took mere seconds to snap into action. This was laughable at some level, since I'd seen so many suburban doctors over the years. Turned out I was atypical = a less-common presentation of lupus, so I totally get your frustration. Thinking of you, Vee

     
    Old 10-28-2013, 07:16 AM   #25
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    Re: Confused on my ANA Titer results etc

    Iron: Yes, it was in pill form. I have been taking it since I was in my 20's, as I have always had low RBC. It makes me nauseous and constipated to take on an empty stomach, so I take it with OJ and benefiber. I hate it.

    My answers are embedded below:

    Quote:
    Vit D: Is last value (24) a little low? According to the lab ranges, Vit D should start on the low end at 30, so yes this is low. Back in 8/2010, it was at 30.7, and the range from a different lab started their low end at 32, so it was out of range then as well, and that was mid-summer when all my time was spent outside (at the pool, in the yard, at the beach, outside running).
    RBC, Hemoglobin, Hematocrit, and RDW: The October 2013 values bear no relation to August 2013 values. Were different reference ranges used? Also, (a) are RBC and Hematocrit LOW on your last set? (b) Is RDW still HIGH on your last set? Actually it was May 2013 and October 2013 that a CBC was run, and while it was different doctors (May was the rheumy and October was the PA), it was run at the same lab. Their range is as follows:

    RBC: 3.80-5.10 May: 3.46 October: 3.26
    Hemoglobin: 11.7-15.5 May: 10.8 October: 8.9
    Hematocrit: 35.0-45.0 May: 33.2 October: 28.0
    RDW: 11.0-15.0 May: 15.2 October: 16.5

    Total iron and Ferritin: These may be the most interesting values of all...?

    Total Iron was run in 1/2010, where it was 35. The range for that lab was 40-175. It was run again in 10/2013, where it was 20. The lab was the same, so the range was the same. In 1/2010, Ferritin was 29, and in 10/2013 it was 3. The range is 10-232.

    Once you get those all-important reference ranges on your chart, are these LOW? Levels? On which dates?
    ANA: Do you see any correlation between this & other abnormal values? e.g., is it increasing as other values, like maybe iron tests, drop? ANA titer was run in 8/2010, and was negative. It showed up positive in 2/2013. So something triggered between 8/2010 and 2/2013. The only things I can think of are: my best friend's sudden death in October 2010, and I dropped about 25#. To lose that weight, I ran a lot, changed how I ate (what I thought was for the better), and consumed a lot of almonds. I read that almonds have an inflammatory response in some people, and their ratio of omega 3's to omega 6's is in the wrong direction (I think they're higher in 6 than 3, which is the inflammatory fat).
    C-Reactive Protein: This may be high-ish, but I'm can't be sure because its reference range is missing. C-Reactive protein was <0.10 in May 2013 and October 2013. The range is <0.80, so it's fine.

     
    Old 10-29-2013, 03:44 PM   #26
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    Re: Confused on my ANA Titer results etc

    Hi. Those #'s now make sense to me. (I think I was thrown off by a few misplaced decimal points.)

    I just saw stats for iron-deficiency in women of childbearing age. They were higher than I expected: 1 in 5 are iron-deficient. Diets that compound the problem include high-fiber, low-fat, and low-protein. If your diet isn't balanced (like during that spell during which you ran a lot, lost 25 lbs., and ate almonds), I'd think that could be exacerbating the problem.

    If you were to rule out Celiac by biopsy, also internal bleeding, then I wonder if you're left with (a) just being one of those "1 in 5" of women who are iron-deficient during childbearing years, or (b) having some rare inherited anemia? BTW, there are a number of eritable anemias; you could get more info on them from your doctors, or from a national foundation. Good luck!

    P.S. I'm sorry you lost your best friend. A loss so big just turns your world upside down (I've been there, too). I hope you've managed to recover your balance & hang onto it.

     
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    Old 10-29-2013, 07:16 PM   #27
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    Re: Confused on my ANA Titer results etc

    I think I am going to wait on the results from the MTHFR snp test (should be soon) and then proceed. If that comes up positive, then hopefully the protocol I started yesterday, which is a methylated form of B vitamins will make a difference. The chiropractor I have been talking to has me taking 2 MethylRenew in the AM (but I have only been taking 1 so far), and 10 drops of the BioD Emulsion (which it looks like that is equivalent to 20,000 IU!! He must really think I am low or not absorbing!). Today was my 2nd dose.

    If it comes up negative, I'm going to give the paleo autoimmune protocol a shot for 45 days. That means no dairy, no eggs, no nightshades (tomatoes, peppers, paprika, etc), no nuts, no gluten, no grains. It seems so daunting, but already I've cut out most nightshades except the paprika, all gluten, and most grains. After that, I don't know what else to do. If our rates go up, a biopsy will be out of the question.

    I'm just really tired of everything hurting. Some days I feel like such a whiner, and other days I think, wow, I can't stand this anymore.

    Quote:
    P.S. I'm sorry you lost your best friend. A loss so big just turns your world upside down (I've been there, too). I hope you've managed to recover your balance & hang onto it.
    Thank you, VeeJ. Actually the 3 year anniversary is coming up, on Halloween. It gets easier as time goes on, but there are often things I wish I could pick up the phone and call to talk about (like the aches and pains!). I am sorry for your loss as well.

    Last edited by Administrator; 10-30-2013 at 01:32 AM.

     
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