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  • Anyone know what these blood results could mean?

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    Old 01-19-2017, 02:17 PM   #1
    29ktgold
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    Post Anyone know what these blood results could mean?

    Hi,

    A little backstory: I am a 19 year old female, recently diagnosed with Ehlers Danlos Syndrome Hypermobility Type, Fibromyalgia, and Lipedema.

    At my first appointment with the rheumatologist, I had 8 vials of blood drawn and had to come back for one more (I had to fast).

    I just had my follow up yesterday to go over results.

    The doctor had an emergency earlier, and my appointment was delayed by an hour. The doctor was also sick, and my appointment was pretty rushed. He told me only three things were off with my blood, which were my Vitamin D level, ACTH, and RNP/Sm. When I looked in my health portal, I noticed way more off results.

    Here they are:

    Cortisol - Range: 6.2-19.4 - Mine: 31.3
    Complement, Total (CH50) - Range: 42-60 - Mine: >60
    ACTH - Range: 7.2-63.3 - Mine: 77.9
    T3 Uptake - Range: 24-39 - Mine: 20
    Vitamin D - Range: 32-100 - Mine: 102.7*
    Magnesium - Range: 1.5-2.5 - Mine: 1.4
    RNP/Sm - Range: 0-83 - Mine: 106
    RF IgG - Range: 0.20 - Mine: 29
    Sed Rate - Range: 15-20 - Mine: 21

    *My doctor was very concerned with this being so high, and he wants to recheck it because he doesn't think it is correct.

    He wants me to see an endocrinologist (I made an appointment for March 2, as he suspects I have Cushing's Syndrome and wants me to rule it out).

    He also thinks I have MCTD (Mixed Connective Tissue Disease).

    Has anyone had any similar blood results?

     
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    Old 01-25-2017, 06:09 AM   #2
    VeeJ
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    Re: Anyone know what these blood results could mean?

    Hi and welcome! I haven't had labs like yours, but I wanted to say HI and that seeing an endocrinologist makes sense to me. I wish you didn't have to wait until 3/3. When you go, you could ask which tests he/she will do to confirm the root cause of elevated cortisol, e.g., adrenal, pituitary, meds, etc. Have you taken steroids? Those are sometimes the cause.

    Re rheum's results. My understanding is that if anti-RNP is the ONLY specific autoantibody found elevated, that points to MCTD (as opposed to, say, lupus or RA or etc.). But I'd probably ask which specific OTHER autoantibodies were tested as part of that RNP/Sm test (just to make sure he'd run a wide panel). I'd also want to know, what's his follow-up plan?

    I don't know of any books specifically on MCTD, but one of the best-known lupus hardcovers discusses how lupus is differentiated from its "close cousins", and MCTD is one of the conditions compared & discussed in some detail. You could find this excellent hardcover in your local library.

    Which doctor was worried about elevated Vit D? I've read that very high levels are dangerous, but I sort of sense your OTHER out-of-range results are the ones crying for fast attention in that your Vit D is only a few points high... Do you take supplements containing Vit D? If you do, I'd report those to the concerned doctor ASAP and ask if I should decrease or flat-out quit.

    Does anyone know what a "dangerous" level of Vitamin D is? (If I find anything, I'll append a note.)

    Looking forward to your updates! Bye for now, with hugs.

     
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    Old 01-25-2017, 10:00 AM   #3
    VeeJ
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    Re: Anyone know what these blood results could mean?

    Hi, again. Consensus seems to be that when 25(OH)D (that's a chemical produced by the liver that Vit D ramps up) is 150 ng/ml or higher, that may be a sign that too much Vitamin D is being taken by supplement. (In contrast, Vitamin D derived from food and sunlight self-regulate.) And when 25(OH)D elevates to that range, calcium levels likewise can elevate, which can have many deleterious effects. So to get the full picture, doctors should test both 25(OH)D and calcium levels. When *both* are high, that points to excess Vit D.

    But high calcium levels can be caused by other things too, like sarcoidosis, hyperparathyroidism, etc. Presumably those would cause only the Calcium test to elevate---which would require further investigation, too, of course!

    So, was your serum calcium level tested too?

    Hope this helps some. Yell if it doesn't make enough sense. Hang in there!

     
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    Old 01-28-2017, 10:23 PM   #4
    29ktgold
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    Re: Anyone know what these blood results could mean?

    Thank you for the welcome!

    I have never taken steroids before. I'm not too sure on my rheumatologist's follow up plan, he said we'll discuss things after I see the endocrinologist. Thank you for the book recommendation!

    My rheumatologist was the one concerned about the vitamin D level. I do not take any supplements or anything containing vitamin D. My calcium level was normal!

     
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    Old 01-29-2017, 05:50 AM   #5
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    Re: Anyone know what these blood results could mean?

    Good morning. Good that your calcium was normal---I imagine that rules out some candidates, at least.

    When you visit your library for Lupus (ETC) books, look for ones that are very "medical" (not inspirational*) and for ones that have an index at the back, so you can find "your" topics (anti-RNP, MCTD, ACTH, cortisol, Cushing's, etc.). You could start writing up questions as you read---even dry-run them with people here, if you wish. (*Not that these are bad---just that they can wait until after you're more sure of your dx!)

    And even if you prefer not to ask too many questions of the endocrinologist or rheumatologist (because you're still rather early in the process), reading will help you hear THEM better. Reading some made a world of difference when I saw my 2nd (and final) rheum and "umpteenth" dermatologist. (Before then, I'd never even HEARD of autoantibodies.) Hang in there, OK?---and keep in touch. Sending hugs!

     
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    autoimmune diseases, cushing's syndrome, ehlers danlos, fibromyalgia, mixed connective tissue disorder



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