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Thread: Vitamin D (ya, my blood test came back)

  1. #1
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    Default Vitamin D (ya, my blood test came back)

    YO my blood test came back and according to the lab range I'm very Vitamin D deficient
    I had the hdyroxy 25 test thingy done and If I remember it was less than 20 total. D2 not detectable.

    Now what? I've been on Vitamin D3 for several months w/ calcium (1000 IU x2 a day) on a hunch that I was deficient (oh boy, I wonder how deficient I was before adding the supplement)

    I don't see my doc again for 4 weeks. could this be why my bones feel like a$$?

    Can I get a shot of D or somethin?
    32 YO Wife, Mother and Advocate
    Lupus - Subclavian Bypass May of 2009. Ectopic Lentis, Scoliosis(not lupus related)
    Current medications: Aspirin, Plaquenil, multi vitamins, folic acid, Methotrexate, Tramadol PRN

    You can find me on facebook at www.facebook.com/sororenotis
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    Cool

    Hi girl,
    I've just heard the same thing from my new rheumy. My vitamin D level was 46 back in July, which is ok. She just got the reports from my Texas rheumy, and my bloodwork on Aug. 24 (just before we left Texas) shows that the vitamin D level plummeted to 29.
    The doc thinks that my theory is right. All through June and July, I was taking my grandson to swim team practice every morning. I was sitting in indirect sunlight, reading, for an hour each morning while he swam. That's what kept the vitamin D levels in the safe zone. Like you, I also take a daily D 3.
    Now that I'm rarely out in the sun, those levels dropped. She gave me a prescription for a mega-dose of D. I have to take a capsule once per week that is 50,000 units of D! She also told me to continue my daily dose and to get out in the sun with NO sunscreen for 15 minutes per day. She suggested beach walking.
    Lucky for me, the sun doesn't make me as sick as it does some of the others on this board. I'm really wondering whether the meds that we take are also leaching the vitamin D?
    I take MTX and Plaquenil. How about you?
    I think that you should call your doc and see if you can get the mega-dose capsules that I have. I know that it is probably chilly in North Texas right now, but see if you can get out and walk on sunny days, too.
    I took my first capsule today, so I'll let you know how it goes for me. I'll get my next bloodwork done in January and then see the rheumy again in February. (We have to go to Arkansas at the end of Dec. to meet our new grandson!)
    Hugs,
    Marla

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    I'm on Plaquenil, Atenolol (post cardiac surgery) and a bunch of other crap. Not on methotexate yet.hopefully since I'm at 19 and y9ou are at 29 I'll at least get the 50k IU prescription....I'm going to see my PCP tomorrow to see if I can get an RX and retested the next time I see my Rheumy in December. She's off for the next month
    32 YO Wife, Mother and Advocate
    Lupus - Subclavian Bypass May of 2009. Ectopic Lentis, Scoliosis(not lupus related)
    Current medications: Aspirin, Plaquenil, multi vitamins, folic acid, Methotrexate, Tramadol PRN

    You can find me on facebook at www.facebook.com/sororenotis
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    I work full time and Leader for International Autoimmune Arthritis Movement
    http://www.iaamovement.org/

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    I've been doing a bit of research about vitamin D deficiency. I've found several good sites, but this one was very interesting - http://www.vitamindcouncil.org/vdds.shtml
    This paragraph was especially interesting -
    "Vitamin D Deficiency Associated Symptoms

    We propose that Vitamin D Deficiency Syndrome is a group of symptoms or signs typical of a disease, disturbance, condition, or lesion, a set of concurrent things and a derangement of function. VDDS is the aggregate of symptoms and signs associated with the morbid process of vitamin D deficiency, and constitute together the picture of the disease.

    Osteoporosis, heart disease, hypertension, autoimmune diseases, certain cancers, depression, chronic fatigue, and chronic pain comprises potential manifestations of the syndrome. That is not to say these illnesses are caused by vitamin D deficiency, nor that repletion of the vitamin D system will cure these illnesses. At this point, all that can be said is that these illnesses are associated with vitamin D deficiency."

    What I get from this is that the experts aren't sure which came first, the chicken or the egg. They aren't sure whether vitamin D deficiency causes AI problems or AI problems lead to vitamin D deficiency, but there does seem to be a relationship.

    Hopefully, this will give you some ammo to take to your doc. I hope that it helps.
    Marla

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    me too. Mine was at 18 in January. I went on 50,000 units (oral) 2 x week for two weeks then 1 x week for six weeks then retested it was 35 and now I'm on mainanance of 10,000 u /week. it made a HUGE difference in fatigue level. HUGE. the 10,000 unit is OTC.

    IMO your dr should call in an Rx before waiting to see her - if not I'd go with that OTC 10,000 units and take one every day. The Rx version is cheaper though. That 1,000 u you are taking is exponetially insufficient.

    You can overdose on Vit D - it is more like a steroid than a vitiman, from what I understand, so you know - be cautious.
    Last edited by karenboss; 10-29-2009 at 01:55 PM.
    much love to all my lupie friends -

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    Anna and Karen,
    My hubby did some online research about Plaquenil and Vitamin D, and it turns out that my hunch might be correct. There is some research showing that Plaquenil has an effect on the level of vitamin D in the body.
    Wouldn't you know it? We take one med to get rid of one set of symptoms, then it causes a whole new set of symptoms and we have to take another med for those.
    I would just like to get off of this merry-go-round!
    Marla

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    I'm pretty sure I was low on vitamin D before I went on plaquenil - My rheumatologist is sending me to an endocrinologist to find out why I'm not absorbing vitamin d.

    Vitamin D is a hormone btw
    32 YO Wife, Mother and Advocate
    Lupus - Subclavian Bypass May of 2009. Ectopic Lentis, Scoliosis(not lupus related)
    Current medications: Aspirin, Plaquenil, multi vitamins, folic acid, Methotrexate, Tramadol PRN

    You can find me on facebook at www.facebook.com/sororenotis
    Please tell me you are from here and who you are if you add me there.

    I work full time and Leader for International Autoimmune Arthritis Movement
    http://www.iaamovement.org/

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    thanks ladies, this is a very interesting and informative thread. Justomegirlindallas, how did your pcp appointment go?
    Phyllis

    share a smile today

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    my vit d deficiancy was also before I started on plaquinel - but Marla, I'm interested in what your hubby found - can you send links?
    much love to all my lupie friends -

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