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  • Please help. Thank You so much in advance for your time.

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    Old 01-11-2011, 04:54 PM   #1
    smitten's Avatar
    Join Date: Dec 2010
    Location: california
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    smitten HB User
    Please help. Thank You so much in advance for your time.

    I think it's possible things look like Lupus. Please let me know your thoughts. Labs are listed below.

    About a year and a half ago, I began to have inflammation at the end joints of my pinkie fingers (out of the blue)..then began to feel in index finger and other finger/hand joints a little. Nose sores (like nothing ever in my life). Then several weeks or couple months later, achy feet. Then, my right hip (sensitive to touch, and sore with movement, like lifting my leg around into frog position), and my left jaw was considerably sore. --one day I woke up and had a hard time walking due to the hip and it was even difficult to walk through the parking lot at was pretty scary, yet that intensity only lasted a couple or a few days. These symptoms along with being tired and foggy minded was concerning. And felt possibly a little low feverish feeling here and there, and just not myself. Sleeping messed up, yet I'm sure partially due to desire to research and a level of concern. I had also gained some weight and for the first time in my life had to buy pants a size larger...felt puffy, bloated, etc. I get unexplainable rashes from time to time, seeming either hormone related (just before or at the onset of period) at neck and hot-spots, or it feels like a symptom or sign of not being all well, like a sign my body is fighting off or trying to keep something away. This rash thing has shown up sporatically for years. I was feeling more sensitive to heat and avoid the sun quite a bit, which is the opposite of how I had been previously.

    My doctor was fishing for answers, and decided a supplement I was taking (Red Yeast Rice) for similar results as what a statin like Lipitor is for, yet is natural...may be causing the muscle/joint I stopped taking it. We also did lab work a little over a year ago and my ANA was a low positive at 1:80 (Vit D was low and my WBC count was low then too..first time I ever noticed that). I was convinced I had RA with all the reading and research I was doing. We also had me do the saliva hormonal test and my adrenals were out of whack from high to low to high to low all in one day. Cortisol not so good either, progesterone a little low. So, I went off the Red Yeast Rice, and started a number of new supplements..Vit D, more C, more calcium, low dose of DHEA, progesterone cream, added a multi vitamin very high in B's, etc. Most symptoms subsided, but my pinkie joints continued and worsened. Foggy minded and forgetful continued as well, and sleep affected somewhat at times. My weight went back to normal. At some point after that I began to notice being cold more where it was hard to warm it just stayed with me...especially hands and feet and nose. There are times I've gone to bed with a beanie hat on!

    So, a year went by and I want to be sure all the supplements I'm taking are still needed, etc. This time I asked the doc to include a specific titered autoimmune antibody test to better understand the prior ANA deal. And so, what I have written are my results.

    Obviously, the antibodies are attacking my thyroid. So, does this mean I have Hashimoto's disease? The Dr. didn't say so, but everything I read seems to say so. Dr. says the tsh and t3 and t4 are in okay range (with the reading I've done, I just don't know if that's necc right...maybe I ought to be on some treatment). He's asked me to take sublingual B12 tablets under the tongue once daily of 1 mg (with my research it appears this must be for my low red blood cell count), and wants to recheck labs in a couple months. He suggested I go back on the Red Yeast Rice (so obviously he no longer thinks that's what caused all the sypmtoms). I'm still much colder than I ever have been, and as a massage therapist having cold hands is definitely an issue...and my mind fogginess seems like more than it should be for my age. and my tummy seems bloated or just feels kinda like things are ..stuck?

    I used to donate blood platelets every 2 to 3 weeks and they'd always take a double donation because my platelet count was SO nice and high. It's now low!! Last year when I had all those symptoms going on and the positive ANA, I kinda stopped going to donate at the blood center because I didn't want to give blood that wasn't good or something. Anyway, after things improved, I finally did go back and learned my platelet count was much lower, and the next time even lower. And this last lab test shows it's low. ..that seems to be a pretty big change.

    Also, for the first time ever, when I had my eye exam the doctor said my eyes are unusually dry. (had never heard that before)...and we've searched for a contact lens that will provide more oxygen and moisture.

    Also, after doing research I have found other symptoms of Lupus or early signs that I've read about (long time ago I had an allergic reaction to a sulphur based medicine (thought I read about that somewhere), and have had strong allergic reaction to insect bites, and I don't know what else I read about as possible symptoms...but a biggie is sometimes I think my face across nose and cheeks is much pinker than it used to be. I think I hadn't noticed it much because I'm usually applying make-up/cover-up so quickly after washing my face every day.

    Anyway, I'm concerned and really appreciate any and everything you may know from your experiences. If you can interpret my labs, thank you soooo much. It seems like everything is either low or high. White blood cells, red blood cells and platelets, and just everything else.

    Also it sounds like finding a knowledgeable specialist is hard, and don't even know if I should ...if you know of one to recommend in California I'd appreciate you mentioning (preferably the bay area to LA, yet further either direction is okay).

    Btw, I'm 48 and have been healthy, active, and thin. I've been focused on health and have eaten a low saturated fat diet for 15 years which pretty much doesn't include meat and dairy...and the last year have cut way down on gluten. I do eat a fair amount of soy. I also supplement with herbs (tea) and all those dr. recommended vitamins and supplements (lots).

    And if you've actually read all this, thank you so much.

    My ANA Pattern was Homogeneous, and Speckled pattern also detected.
    My ANA is positive at 15 with the reference range <7.5
    ...this equates to 1:80 - 1:32.
    Thyroid Peroxidase Autoabs result is 132 (High) with reference range <60.

    ---dr. then ordered more thyroid tests---
    TSH is 1.66 with a range of 0.27 - 4.20
    T3 is 2.7 with a range of 2.2 to 4.0
    T4 is 1.23 with a range of 0.93 - 1.70

    C3 Complement is 100 (nearly Low?) with reference range 90 -180.
    C4 Complement is 29 with reference range 16 - 47.
    Rheumatoid Factor is 9 with reference range <14.
    All the other Autoabs were Negative.

    CCP is 3 with reference range <=39.
    Homocysteine is 10 with reference range 4-15.
    CRP Highly Sensitive is 0.4

    WBC is 3.5 (Low) with reference range 4.5 - 11.0
    RBC is 4.1 (close to Low) with reference range 3.8 - 5.5
    MCV is 99.1 (basically High) with reference range 81.0 - 100.0
    MCH is 34.1 (High) with reference range 26.5 - 34.0
    MCHC 34.4
    RDW is 13
    PLT is 170 (nearly Low) with range 150 - 450
    Ne% is 67.9 (nearly High) with range 37.0 - 73.0
    Ly% is 18.6 (nearly Low) with range 15.0 - 43.0
    Mo% is 8.9
    Ne# is 2.3 (nearly Low) with range 1.3 - 7.0
    Ly# is 0.6 (Low) with range of 0.8 to 3.1
    Mo# is 0.3 (nearly Low) with range 0.1 - 1.3
    Eo# is 0.1 (nearly Low) with range 0.0 - 0.4
    Ba# is 0.0
    Glucose is 97 (close to High) with range 70 - 105
    Bun is 9 (basically Low) with range 8 -21
    Creatinine (nearly High) with range 0.5 - 1.0
    K is 3.9 (toward Low) with range 3.5 - 5.1
    CL is 105 (near High) with range 98 - 107
    TCO2 is 28 (nearly High) with range 22 - 30
    TP is 6.4 (basically Low) with range 6.4 - 8.3
    Globulin is 2.1 (Low) with range 2.2 to 4.2
    A/G Ratio is 2.0 (basically High) with range 0.8 - 2.0
    AST is 23 with range 0 - 32
    TBIL is 0.90 (nearly High) with range 0.20 - 1.00
    GFR estimated is 71 with range >60

    THANK YOU!!!!!! I'm so grateful for ANYTHING you have to say.

    p.s. User name is indicative that I've just entered into a new relationship, awwww, I know (first potentially very significant one in YEARS) and I almost feel hesitant because I don't want him to get involved with someone that is going to be sick. :-/

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    Old 01-12-2011, 03:33 AM   #2
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    VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
    Re: Please help. Thank You so much in advance for your time.

    Dear Smitten, hello & welcome. By the way, I like your user name: it gives hope to those of us (way) past our teens.

    I'm only a patient, but in what you wrote, I didn't see listed the more specific tests usually run when lupus is a possibility: you said your "other antiabs" were negative, but I couldn't tell which were run. The problem with ANA is that it's only a threshold test: it goes positive in a VARIETY of diseases in rheumatology, in endocrinology (e.g., Hashimoto's), etc. You'll find the more specific tests usually run for lupus in the "sticky post" (permanent info post) titled "lupus test results". (The stickies are at the top of the thread list. The word "sticky" prefaces the thread title.)

    Then check out the "sticky" about lupus diagnostic criteria. To support a Dx of SLE, generally one must meet 4 of the 11 over time, meaning not necessarily simultaneously. A good rheumatologist (and I stress "good") will literally count these. Once met, imagine each being checked off permanently, in indelible ink. So far, you *may* have fulfilled the one about positive ANA, albeit with a low positive (I'm not sure how high it has to be, to get counted.) Maybe you've met some others as well (not being a doctor, I wouldn't want to guess.)

    You'll note that only two specific autoantibodies, anti-ds-DNA and anti-Sm, actually "count" as criteria. The reason is that although there are quite a few MORE possible in lupus, those others are seen in multiple conditions. To illustrate, "anti-Ro" is seen in both lupus and Sjogren's syndrome.

    You mentioned rashes/redness on your face and neck. In lupus, there are a handful of lupus-specific rashes, but once again only several (malar and discoid) correlate strongly enough to "make" the criteria list. What do yours look & feel like? Are they photo-induced? Have you seen a dermatologist or dermatopathologist?

    An aside: I learned the hard way how useful but perplexing rashes can be. Instead of having rashes easily recognizable as lupus-specific, like malar or discoid, instead I sprouted targetlike nonscarring circles on my arms and back. I saw MANY local dermatologists and had multiple deep-punch biopsies, then I ran out of patience with all my local specialists. The teaching hospital rheumatologist I finally saw also referred me to a dermatopathologist; and with one last biopsy, I learned I had a lesser known lupus-specific rash called SCLE annular form. (Was honked after seeing all those local dermies!)

    Of the other problems you mention, I believe (but again, I'm only a patient) that some are certainly common in lupus---but, alas, these are no doubt possible in other conditions as well. e.g., low B-12, low RBC and WBC, low platelets, dry eyes (which is also seen in Sjogren's syndrome), mucosal ulcerations (in nose or mouth), etc.

    For all these reasons, in your shoes I'd see a rheumatologist if I believed lupus is a possibility. And if your rashes appear "useful" to the rheumatologist, I'd ask him/her to refer me to a dermatologist or dermatopathologist who's good at autoimmunes. I'll stop here to let you study the stickies & really ponder the meaning of the "4 of 11" diagnostic criteria. Afterwards, I hope you post more. Meanwhile, sending my very best wishes, sincerely, Vee

    The Following User Says Thank You to VeeJ For This Useful Post:
    smitten (03-24-2011)
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