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    Old 05-28-2014, 12:22 PM   #1
    mlong3019
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    Question Positive ANA, Low Vitamin D

    Hi Everyone...I'm new here. I visited my doctor last week and she called with my blood test results yesterday. She said that my ANA (antinuclear antibody) test was positive and my vitamin D level was low (it was 28, they wanted at least 50). She's referring me to a rheumatologist, but of course I'm anxious to find out what this is (if it is something). My sed rate and rheumatoid factor were okay, as were my thyroid, liver, and kidney function. I'm 32 years old and have a long history of joint pain, particularly in my knees, neck, back, and feet. I also have a history of leukopenia (low white blood cell count) and mouth ulcers. When I went to the doctor I was expecting to maybe hear that I have arthritis (my mom has had it since she was even younger than I am). I didn't expect to hear that I might have something auto-immune.

    I know I should just wait for my appointment with the rheumatologist and not obsess over googling and webMDing these things, but I'm a control freak and I just want to know what is going on. I know they will do more blood work at the very least, but some of the things seem to point to lupus (SLE). Does anyone have any insight or advise for me??
    Thanks in advance!

     
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    Old 05-28-2014, 02:58 PM   #2
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    Re: Positive ANA, Low Vitamin D

    Hi & welcome. Have you seen the "sticky posts" (permanent info posts) located right above the user threads? One contains the ACR (Am. College of Rheumatology) criteria for diagnosing SLE. Generally, but not always, you must meet 4 or more of the 11. These may be met cumulatively, meaning over time, not necessarily all at once.

    I'm just a patient, but you *may* have met 4---but depending on how your rheum counts them: mouth ulcers, arthritis, hematologic (leukopenia), and positive ANA. But I stress "may", as some count only at a certain level. For ANA, I'm not really sure what level is "countable", but I believe low levels like 1:40, 1:80, and 1:160 aren't counted. For leukopenia, your WBC has to be below a certain level. The oral ulcerations redolent of lupus are of a particular kind, i.e., not cold sores or just any old mouth sore. Etc.

    Once ANA is positive, rheums run tests for specific autoantibodies called "ANA subtypes". Only two are considered very specific to lupus, anti-ds-DNA and anti-Sm, but quite a few others are possible. Urinalysis will likely be done as well, to look for protein or abnormal sediment [another criteria], as those would suggest kidney involvement. (While you said your labs were OK for kidney function---which is great---I'd expect urinalysis anyway.)

    To prepare, you could prepare a brief list of your symptoms, noting how far back each dates, how often it recurs, and how long it typically lasts. (I was asked to prepare such a list. I kept mine short, only sentence fragments, less than 1 page total, since doctors love brevity.)

    If you feel like reading in-depth, you could visit your library & borrow hardcovers. The caveat here is, if you do, please do not let that huge array of problems overwhelm you! Many patients don't ever get most of the problems you'd read about, and many never have major organ involvement (kidney, brain, heart or lungs). Also, many do well on just the lightest tier of lupus meds, an antimalarial (usually Plaquenil).

    When did your symptoms start? Just curious. I had a long spell at age 13, with leukopenia, elevated ESR, fever, hair loss, and howling pain. Laughably, I developed add'l problems over time. My very last was perhaps the most defining: photosensitive rashes that were finally determined to be lupus-specific. My suburban doctors had looked for the classic signs---and there I was, with the wrong rash and the wrong labs (I had the anti-Ro antibody). I'll always wish I'd gotten answers & help much sooner. So as alarming as this feels to you right now, I do think if this IS lupus, you'll be so much better off knowing & dealing.

    A last note: at 28, your Vit D isn't horribly low; the range is roughly 30-100. (Mine has gone to single digits. I supplement, and my rheum likes it just above low, no higher, since higher levels were recently found to possibly increase inflammation in patients with autoimmune arthritis.) Anyhow... glad you found us! I hope you get clarity soon. Looking forward to your updates & sending warm wishes, sincerely, Vee

     
    Old 05-29-2014, 11:54 AM   #3
    mlong3019
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    Re: Positive ANA, Low Vitamin D

    Thank you so much for the reply Vee! I will look over the sticky posts and see what I can find.

    I was able to get a copy of my lab results and my ANA shows >=1:1280 Speckled. Other notable results were the slightly low Vitamin D (the labs agree with you, normal being above 30, but my doctor was looking for 50 or more) and the low WBC count (3.5, the results show 3.6 is low, so this is pretty borderline. Since I've had this for a long time, I know 3.5 is the high end of where mine runs) , specifically low in neutrophils (24 with 37-72 being normal) and high on lymphocytes (61 with16-48 being normal). It looks like they did test my DNA (DS) Antibody, and that was negative. I don't see anything indicating they tested anti-Sm, so I guess my rheumotologist will test that and I'm sure other things. I haven't had a urinalysis yet, so I'm sure they'll do that as well.

    In terms of when my symptoms started...that's a little difficult to say for sure. I've had joint pain for as long as I can remember, really, probably worsening in my later teenage years. The low white blood cell count was found when I was 19 and had appendicitis (even with a raging infection my WBC was extremely low). The mouth ulcers (they aren't cold sores, but true large blisters inside my mouth that come and go) probably started around 12 years ago or so. The joint pain has been getting progressively worse over the years, particularly the last 3-5 years and even more so the last few months. I've recently (in the last year) lost about 45 lbs and the joint pain is starting to affect my workouts. As a teenager, it started with knee pain, then on to back and neck pain, and now also includes feet, wrists, hands, and elbows. So we'll see. My appointment with rheumotology isn't until June 17th, so I'll be anxious for that. At this point, I definitely just want to know what it is so I can deal with it.

    Thanks again for the reply, I appreciate it it so much.

     
    Old 05-29-2014, 02:12 PM   #4
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    Re: Positive ANA, Low Vitamin D

    Hi, you are very welcome! The stickies are basic, but that's actually their virtue. In the one containing the criteria, did you scroll down far enough to see the so-called "alternative criteria"? They're a list, developed by a famous British specialist, of things seen in the earlier years in those who later develop lupus. I find them fascinating (they're like a mini-bio of my childhood).

    When we're fighting raging infection, I think WBC's are expended quickly and can deplete---but having a chronically low WBC is definitely not normal.

    ANA of 1:1280 should definitely catch the rheum's attention!

    There's no single test for lupus, which is why you see instead those 11 diverse criteria.

    As for the autoantibodies (AB's) seen in lupus, anti-ds-DNA and anti-Sm are considered very specific, which is why they make the criteria list. Some of the "fuzzier" AB's are antihistone, anti-RNP, antiphospholipid, anti-Ro, anti-La, antiribosomal P, antierythrocyte, ANCA, antilymphocyte, antiplatelet, antineuronal, and rheumatoid factor. Specificity for these "fuzzy AB's" ranges from good to fair to poor.

    In addition to tests for lupus, I imagine he'll also consider close cousins like Sjogren Syndrome, Rheumatoid Arthritis (RA), Mixed Connective Tissue Disease (MCTD), etc. One of the best-known hardcovers discusses these close cousins and explains how each is differentiated from lupus.

    I was curious when your symptoms started because my rheum once said, casually in passing, that lupus loves hormone shifts. Sure enough, when I looked back at my life, I saw a strong correlation. Anyhow, we're here anytime you want to talk. I really hope you nail this (whatever it is) down fast, so you can move on to better days. Sending my best, V.

     
    Old 05-30-2014, 07:54 AM   #5
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    Re: Positive ANA, Low Vitamin D

    I don't know if I'm seeing the "alternate criteria"? Maybe I'm missing something?

    Yes I was glad I asked for a copy of the results, I feel better somehow knowing the number--I know that sounds strange, but I know it's not borderline and I won't be blown off by the doctor, does that make sense? For so many years many of these symptoms were brushed aside or I tried to ignore them, because I haven't really dealt with debilitating issues. For me, it's been more chronic and bothersome, and only occasionally do I have pain that really stops me in my tracks.

    It's interesting that some of the AI issues flare with hormone changes. I have two kids and it makes me wonder if some of the pain I had during pregnancy wasn't "normal" pain. I think I've spent so many years trying to convince myself that it was normal to have daily pain, that I started to ignore it.

    Thanks again for making me feel so welcome! And for all of the information!

     
    Old 05-30-2014, 12:13 PM   #6
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    Re: Positive ANA, Low Vitamin D

    The more I read the more I start to consider too...I don't know if I can attach a photo, but I'm wondering if my naturally ruddy/reddish cheeks are the butterfly rash. Does that come and go?

     
    Old 05-30-2014, 12:50 PM   #7
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    Re: Positive ANA, Low Vitamin D

    Hi. For the alternative criteria, open the sticky titled "Criteria to diagnose lupus", then scroll down to a separate post within the same thread; it begins with the words "ST. THOMAS". (That's the London hospital in which the doctor who developed the list practiced.)

    The classic butterfly (malar) rash tends to come & go, and can last days, hours, or weeks. I've seen pics in which its shape/size/intensity varies. But one thing is consistent, though: it spares the naso-labial folds (those little indented lines running from outside corner of nose to outside corner of mouth). You could take along your pics when your see the rheumatologist.

    I know what you mean about quasi-convincing yourself that pain etc. are "normal"*. I processed it the same way, esp. since my local doctors (many) had no answers---so what else could one do, except keep on truckin'? But I sense you're finally at a turning point---hope so! Keep us posted. If you find other things you want to kick around before your appt., you know where to find us. Enjoy your weekend.

    *There's a separate sticky for skin problems seen in lupus. I was laughing when I typed "normal" because I was remembering how the people at my gym reacted. I had target-like red rings covering my upper arms and back (they came, faded, then recurred). No one wanted to be anywhere near me.

     
    Old 05-30-2014, 01:01 PM   #8
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    Re: Positive ANA, Low Vitamin D

    Ah okay I see where you mean, thanks very much. I don't think my redness really changes too much, I guess I'll try to pay closer attention. It's not so obvious, like it doesn't look blistered, just redder than a normal complexion, and kind of blotchy, so I might be over-reaching there. I guess we'll see what the rheumy thinks of it.

    And thanks, I hope this is a turning point. You're so sweet to keep answering me.

     
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