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    Old 02-07-2015, 11:43 AM   #1
    Quathy's Avatar
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    Autoimmune? Thoughts.

    Hey there, I'm wondering if you guys have any thoughts as to whether this is an autoimmune esp. Lupus.

    Im a 33 yr old female. I was diagnosed with classic complicated migraines in the 1980's and sun allergy PMLE in 2005. In the last few years, however, I have had bouts of hives on the palms/soles, had 3 vocal spasms (not sure what they are but scare me some), butterfly rash on the face (not horrible but visible), fatigue, recurring ovarian cysts, periodic UTI, mild anemia. Also have constant sacral/hip pain for the last year or so.

    Doctors have looked at Lupus and Angioedema and are checking the kind of anemia. Another naturopath thinks there is adrenal fatigue going on on top of things and the regular docs don't

    Maybe of significance: Igm 274, C3 74, C4 19, ch50 >60, RBC 3.86, HCT .352 (MVC, MCHC, Iron, TIBC, Saturation all normal), low T/DHEA.

    Normal: ANA, ELISA, AB, IF, ASE3, Vitamins, electrolytes, BP cholesterol normal. Sacral ex-ray looks normal. Lupus with neg ANA is unlikely.

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    Old 02-10-2015, 08:18 AM   #2
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    Re: Autoimmune? Thoughts.

    Hi & welcome. Lupus is typically diagnosed using a set of 11 criteria. Generally, but not always, you must meet 4 or more to sustain the diagnosis of *systemic* lupus. (But you may meet fewer than 4 and have a "cutaneous" subset that basically involves mainly skin, plus perhaps some fatigue & pain.) The criteria may be met over time, not necessarily simultaneously (envision checking them off in indelible ink). You could find these on the lupus board.

    I'm just a patient (lupus) but I suspect that doctors give a lot of weight to ANA, as you said, because it's positive in something like 95% to 97% of all people with systemic lupus. The rare exceptions are almost always people who are positive for the anti-Ro antibody. The problem here is that labs might run tests in a "cascade", meaning only perform tests for the subtypes (anti-ds-DNA, anti-Sm, anti-Ro, anti-La, etc.) if ANA tests positive. You could ask whether the subtype tests were actually run, or if their results were just "defaulted to negative" because your ANA tested negative.

    In your paragraph showing results for IgM, C3, C4, CH50, RBC, HCT, and T/DHEA, do you know reference ranges? (Except for the last one, I can't tell if your values are high or low.) autoimmune hemolytic anemia, low platelets, or low WBC would meet one criteria, I think. Low C3, C4 or C50 may not be a criteria, per se, but they'd likely be viewed as very suggestive.

    OTHER THOUGHTS. (1) Was urinalysis done? (One criteria for lupus is protein or abnormal sediment in urine, but you'd really not expect either if your blood labs showed normal kidney function.) (2) Were thyroid values checked? I believe thyroid conditions can cause hives in some people, also swallowing problems. (3) Have your doctors considered RA, and did your tests include Rheumatoid Factor? I think the rub with RA is that a fair number of people with it NEVER turn positive for either RF or ANA. Today I think doctors consider a test called anti-CCP (anti-cyclic citrullinated peptide) to be the best predictor of early RA.

    Re: angioedema, I *think* I remember other people posting about IgM in the past. You could try the search tool (in blue bar) to look for such posts.

    Re: anemia, there's something called "the anemia of chronic disease" in which people have anemia because of ongoing inflammation. Another form of anemia is strictly autoimmune: antibodies are attacking the surface of RBC's.

    Re: adrenal fatigue, I think it's controversial to most "mainstream" doctors.

    Re: skin, it's really interesting to me that you were dx'ed with PMLE (polymorphous light eruption) in 2005. Was this Dx made by a dermatologist? Do you know what tests confirmed it? I ask because I learned, the hard way, that there are more lupus-specific rashes than just the two that most doctors know, malar and discoid. My highly photosensitive rashes turned out to SCLE (subacute cutaneous lupus erythematosus), the annular (targetlike) form. But there's a second (and very different) form of SCLE called psoriasiform or papulosquamous, which looks akin to psoriasis. The SCLE rashes don't tend to itch, scar, or depigment. Anti-Ro is common in people with them, yet ANA is positive in only about two-thirds.

    I had to go to an "ultraspecialist" recommended by my rheumatologist to get a proper lupus band test (LBT) performed, because my local derms knew not what they were doing. In the LBT, a deep-punch biopsy is done. In the first step, the punch is inspected under the microscope for telltale cellular changes. In the second step, a variety of immunofluorescent stains are applied which can reveal IgG, IgM, IgA, complement 3, and fibrinogen deposited between the dermal & epidermal layers of skin. If all 5 are found, the probability of lupus is > 99%. (My test was grossly positive on all 5.)

    Although I can't know if lupus is a possibility (sorry!), I hope something above gives you more questions to ponder & perhaps pose. Drop us another post when you can, OK? Looking forward to hearing more & sending warm wishes, Vee

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    Old 02-10-2015, 01:25 PM   #3
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    Re: Autoimmune? Thoughts.

    Thanks so much for the information!
    I'll definitly ask about the anti-CCP and LBT and Lupus sub types.

    The urine analysis showed no protein, RF for RA was normal but did find a bad bladder infection which is making the diagnosis hard because it can influence IG and C values.

    The PLME sun allergy was diagnosed by a dermatologist who also ruled out Lupus at the time. Since then it was ruled out again via ANA but every doc jumps right to lupus with he symptoms inc malaria rash.

    Here are the test results:

    Lupus Tests
    ANA ELISA Negative 2005
    ANA AB, IFA, IF (TITER) Negative 2012
    ANTI-MPO Negative 2005
    ANTI-PR3 Negative 2005
    SS-A/Ro, SS-B/La - Negative 2005
    IGA (70-400mg/dL) 124
    IGG (700-1600mg/dL) 748
    IGM (40-230mg/dL) 247 - High

    ESR (0-20 MM/HR) 5
    CRP (<5 mg/L) <0.7
    C4 (16-47) 19
    C3 (90-180) 74 - Low

    Other Autoimmune
    RF (QNT) (<12) <9
    C1 INH (21-39) 21 then later 19
    C1 INH Functional (>68%) 85
    C1q SERUM (5-8.6 mg/dL) 5.8
    CH50 (31-60) >60 - HIGH

    Anemia Tests
    HGB (119-161 g/L) 112 - Low, mild
    HCT (0.37-0.47 L) 0.352 - Low, mild
    MCV (77.7-93.7 fL) 85.5
    MCHC (310-360 g/L) 318
    ABS RETICS (39.1-57 10e(9)/L) 34.9 - Low
    RHTICULOCYTES (0.86-1.36%) 0.9
    B12 (156-672 pmol/L) 549
    FERRITIN (10-291 ug/L) 11 - Low
    IRON (7-30.4 mol/L) 22.82
    TIBC (43.4-76.5 umol/L) 52.41
    % SATURATION (14-55%) 44
    Blood Issues
    RDW (11.5-15%) 13.9
    WBC (3.5-11.6x10:3/uL) 4.25
    PLTS (186-350x10(9)/L) 192

    BUN (7-26 mg/dL) 9
    CREATININE (49-90umol/L) 85
    BUN CREATINE RATIO (10-20 ?) 12
    GFR (>60) >60
    Urine Creatine (1.1-17.9mmol/L) 18.5 - High

    ALP (32-150 U/L) 41
    AST (9-53 U/L) 20
    ALT (0-52 U/L) 13
    BILIRUBEN Total (0-1.3 mg/dL) 0.8

    TSH (.32-5.8 mlU/L) 1.85 and later 1.18
    Free T4 (8-22 pool/L) 14.2 and later 18.2
    T3 (3.5-6.5 pmol/L) 5
    Thyroglobulin AB - Negative
    TPO AB - Negative

    Last edited by Quathy; 02-10-2015 at 01:28 PM. Reason: typo

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    Old 02-10-2015, 02:35 PM   #4
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    Re: Autoimmune? Thoughts.

    Hi again. For the record, my blood labs didn't find anti-Ro until the very end, 8 years into my rashes (maybe just due to the timing of my blood draws, I don't really know); and I don't think my ANA ever tested positive. Also for the record: the specialist who did my LBT is a dermatopathologist (both a dermatologist and a pathologist); this dual specialty is probably found mostly at larger institutions, like teaching hospitals.

    I'll make you laugh. *I* was the one who identified what my rash likely was, after seeing 8 local dermatologists, a rheumatologist, a neurologist, and multiple GP's. I consider that pretty pathetic, don't you? When I first realized that there were multiple kinds of lupus rashes that I knew nothing about, I borrowed lupus hardcovers from my local library, learned some add'l rash names, then started investigating each (how each looks & feels, etc.)

    I think my local doctors simply weren't familiar with the full array of lupus-specific rashes. Malar? Sure. Discoid, yes. But not the others... Also, they put way too much weight on the ANA test.

    I don't know what it may mean, if anything, that your C3 is low-ish, your C4 is low, but your CH50 is elevated; and I wonder whether elevated CH50 has any known correlations? Also, I don't know the significance of high urine creatinine & would definitely ask about that, too.

    In addition to the 11 ACR diagnostic criteria for lupus, there's also a set of so-called "alternative criteria" established by a world-famous rheum, in which he lists things that very often happen earlier in life in those who later develop lupus. Those were eye-opening to me. I matched on 11 of the 14.

    I forgot to ask whether you still go out in the sun (after being told you had PMLE) & what sun does to you overall, not just "rash-wise". I finally deduced, pretty much on my own, that my rash was sun-induced. But years before my rashes even started, I was getting migraine-like headaches after being in sun. In time I hit the point of having flare-ups year around, not just warm months.

    Since every doctor you've seen jumps straight to lupus as something that might logically explain your various issues, I think it's smart on your part to want it (re)considered, this time including "subsets" and "variants". I sure hope you can get over the diagnostic hump soon, to whatever is doing all this. We'll watch for updates, but we're always here any time you want to talk. Saying bye for now, Vee

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    angioedema, autoimmune, hives, lupus, vasculitis

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