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Thread: More pieces of the puzzle?

  1. #1
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    Default More pieces of the puzzle?

    Well, I mentioned that my Dr kind of disappeared on me, and I have to find a new Dr in a previous thread. The good thing to come from this was that I was able to get copies of all my lab results in my chart finally! Some of these labs had been done in April and I had never gotten any news except a form letter saying all results were normal except low vitamin D. Turns out they weren't all normal!

    WBC count, RBC count, Hemoglobin, Lymphocytes, potassium, BUN and BUN/Creatinine ratio, and T4 were all low!! And my MCH was high. Not sure what that means, but I am going to look it up. ANA and anti-ds DNA were negative. Although those were done a few months ago before my photosensitivity kicked in, so I'm curious to see what they were be if tested again since I've just been getting new symptoms coming out of the woodwork. Maybe it will take some time for any of the antibodies to show up?

    I guess it is reassuring to know that there is for sure something going on. I still think Lupus, but now I wonder about my thyroid since my T4 was low, but my TSH was still low, so something odd going on there. And there is hashimoto's in the family. So now I can add this to my list of symptoms and take these results with me to my rheumy appointments next month (and the endo next week).

    I know I shouldn't try to diagnose myself, but so far it is just adding up to look more and more like Lupus. I just want to get to the bottom of things so I can get treated and start feeling better! Going by the criteria list, does it look like Lupus?

    This is what I have from the 11 criteria
    -malar rash
    -photosensitivity
    -oral/nose ulcers
    -arthritis
    -maybe kidney problems? protein and blood in urine off and on, lots of issues with stones, urine sediment, etc
    -anemia
    -possible serositis. (stabbing chest pain that is worse when taking a deep breath)

    Add on the new allergy to Bactrim, fatigue, hair loss, temp at 99-100 more days than not lately (and I typically ran around 97.8 or so), brain fog, possible vasculitis, possible raynaud's, etc, etc, etc,


    So my question would be if they say it's not Lupus because I don't have a positive ANA, what in the world could act so much like it? Including the butterfly rash and photosensitivity?

  2. #2
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    Wendy,
    There are over 60 autoimmune diseases - check out the stickys at the beginning of the forums - the list is on one of them.
    They love to come in groups and many of the symptoms overlap. I have an overlap of Lupus, Sjogren's, RA and Psoriatic Arthritis.
    You said that there is Hashimoto's in your family. That's a clue there, too. It seems that AI issues of different kinds can pop up all over a family.
    You're doing the right thing - collect all of your information and go into that appointment armed with it and with lots of questions.
    Hugs,
    Marla

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  4. #3
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    You can even have an autoimmune condition with no name. Based on my bloodwork (low C3 and C4, everything else normal, including negative ANA), a rash that looks like urticarial vasculitis but histopathologically (on biopsy) looks like lupus, and persistent blepharitis and pain, my internist and rheumatologist agree I have either an autoimmune connective tissue disease that will develop into something else more defined at some point, or I have my very own unique AI manifestation.

    Either way, with the bloodwork and biopsies indicating an AI connective tissue disease, my rheumatologist decided to start me on Plaquenil even though he couldn't give it a name.

    (Also, you might want to get your thyroid antibodies checked. I also have Hashimoto's disease and the associated hypothyroidism. Hashimoto's can cause many strange symptoms if untreated.)

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    I got some more results back. My CRP is super high, so I'll bring that along to the rheumy, too. Looks like it's definitely adding up to something AI.

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    Quote Originally Posted by wendya432 View Post
    I got some more results back. My CRP is super high, so I'll bring that along to the rheumy, too. Looks like it's definitely adding up to something AI.
    With that CRP, definitely seems like it's likely to be inflammatory/AI. Um, welcome to the club?

    (But in all seriousness, I hope things go well for you, and I am sorry you are joining our stupid club. Keep us posted on what the rheumatologist says. When do you see him or her?)

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    I have Hashimoto's and it was undiagnosed for years. During that 15 year time span my TSH varied wildly from 6.60 to 4.87 two weeks later, to 2.75 seven years later, to 14.85 a few months ago. Hashi's has flares too; some times are worse than others until the thyroid stops working. If you think you are hypothyroid, keep getting tested. And like someone else said, get tested for thyroid peroxidase antibodies (TPOAb) as well as T4, T3 and TSH.

    Good luck! Hope you feel better soon.
    Nicole S

    Acceptance is the key to happiness.

    ITP - 1993
    Celiac - 2012
    Hashimoto's - 2012

    CANADIAN

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