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Crohn's Disease
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Posted 6/10/2011 3:59 AM (GMT 0)
i've been reading a lot about the role of vit d and crohn's and that lower levels seem to be indicative of disease...i asked my doc to test me and i was "normal" but way low compared to what all the articles say is really an acceptable level...anyone taking vit d and if so how much?  i heard too much is bad also and its hard to regulate what is really needed without constant testing...
Posted 6/10/2011 4:11 AM (GMT 0)
You can find lots of vitamin D info at vitamindcouncil.org I take about 6000 I.U. a day!
Posted 6/10/2011 4:53 AM (GMT 0)
Doc has me on 10000 IU tablets . I take one per week . Before starting them my level was (4) . Trust me that ain't good .
Posted 6/10/2011 5:38 AM (GMT 0)
I have my level checked every 4 months and my dose is adjusted each time. I am currently at 4000 IU. Lowest amount so far, thanks to my convertible and my love for driving. If you ask I can direct you to every rest area on I5.
Posted 6/10/2011 7:40 AM (GMT 0)
thanks for the info. i'll ask if he can retest and see if we can work something out to try to keep my level more elevated to see if that can do some good.
Posted 6/10/2011 12:14 PM (GMT 0)
When blood is tested what is actually measured is the metabolically active 25-hydroxyvitamin D form of the vitamin in the blood serum. Ideally your levels should be in the 40 to 60 ng/mL range.

Approximately each 1,000 IUs of vitamin D taken daily will raise the levels about 10 points. So if your now measure 25 then adding another 1,000 IUs of D each day should raise it to about 35.
Posted 6/10/2011 1:10 PM (GMT 0)
I have been taking 50,000 IU for years (5+). A couple of years ago when I was tested I was still too low, so my endocrinologist had me add in some on a daily basis. So now I take 1000 IU daily in addition. That doesn't count the amount that is in my calcium supplement. I was still low at the next test too. So I think I may just not have enough of whatever I need to absorb what I am taking in. My level is steady, just low. I am due to go soon for another test.
Posted 6/10/2011 1:27 PM (GMT 0)
I take 5000 units daily. If I tend to go lower on it, I find my fibro pain increases. Good luck!
Posted 6/10/2011 9:20 PM (GMT 0)
I am back up to 4,000 units daily. However my doc does not want me that high as she said that can increase the chance of getting a kidney stone.

Has anyone else heard that?
Dave
Posted 6/10/2011 11:19 PM (GMT 0)
My Levels for Vit D and B12 are always a little low. I tolerate the B12 but the D gives me too much bloat so I don't take it much. Maybe once a week - 1000 iu. I do eat yogurt with added D and sit in the sun everyday. I think it helps a little I hope. The doc doesn't seem to worried.
Posted 6/10/2011 11:37 PM (GMT 0)
I read it helped lupus too, so I started taking it
Posted 6/11/2011 1:12 AM (GMT 0)
I take 8,000iu in liquid drop form. 4 months later my levels went from 25 to 32, just above the lowest recommended number. I think some of us will not absorb the Vit. D as well as someone without Crohn's. I'm going to continue on this dose and retest again at 6 months. I have no side effects at all. I'd like to get that number in the 60's but don't like the idea of taking a megadose.
Posted 6/11/2011 3:44 AM (GMT 0)
thanks for all the info!
great...vit d can cause stones? i've had about 10...in fact passed one last week...that's all i need to keep dealing with...haha
Posted 6/11/2011 6:23 AM (GMT 0)
I've added vitamin D to my regime (listed in my sig below) and I'm sticking with it...I find it beneficial (my montly periods used to be so horrible until I started taking vitamin D daily).
Posted 6/11/2011 9:53 PM (GMT 0)
Pb4- how much vit D do you take and is it D3 ?
Posted 6/12/2011 1:07 AM (GMT 0)
I tested extremely low and have been taking 50,000 for a couple of months now. They tried to put me on a smaller maintenance dose but my levels dropped again. I have another month and once again we will try a maintenance dose. I keep hearing of the relationship between crohn's and vit d , it does make you wonder.
Posted 6/12/2011 3:29 PM (GMT 0)
junerainbow have you noticed an improvement in your symptoms at the higher dose?
Posted 6/13/2011 8:16 PM (GMT 0)
Hi pmedic,

I take High potency vitamin D3 daily, 2 1000 IU, I may start taking more in the winter time when we have much less sunshine but now that it's summer I'll probably just stick with 2000/day.  Hope you are doing well!
Posted 6/14/2011 12:31 AM (GMT 0)
Thanks Pb4! I have been managing. It is a juggling act as I start to flare then get it under control by incorporating the SCD into the mix. This DD is such a nonstop pain in the you know what! I was on the 50,000 IU vit D but after I reach a therapeutic level I was put on 1000 and it hasn't held. I have been extremely tired but wasn't due for my D test til July so I decided a few days ago to up my dose to 2000IU and noticed a big difference already. Thanks again for the D info!!
Posted 6/14/2011 2:27 AM (GMT 0)
My most recent level was 32 and I got a note saying doc wanted it raised to 35 or > so I should start taking D. 

The thing is, I looked at my blood work done four months ago and at that time it was only 25 and flagged L and I never heard anything nor did the doc say anything  at my last appt. when I asked about the blood work.

Posted 6/14/2011 5:32 AM (GMT 0)
Yikes pmedic!! I'm really glad SCD has been helping you...and I'm glad you found improvements with energy after upping your vit D...hang in there.
Posted 6/14/2011 11:54 AM (GMT 0)
I take 2000 iu a day at my general docs insistence. He said it is the only one of my tests coming back off now. I really do notice a difference when i take it....I think it adds in minimizing sadness. Whether that is a placebo affect or it actually does it I don't care.
ps. I live in a low sunshine area of the US so we are all D deficient just to different extents.
Posted 6/14/2011 12:11 PM (GMT 0)
I have found I don't catch colds as often when I take my 2000 iu a day of Vita D
Posted 6/15/2011 9:09 PM (GMT 0)
My doc told me, after testing specifically for D, he had only seen 1 person with lower levels.  I am on 50,000 weekly for 8 weeks.  It seems to really bother my stomach the day of the dose.  I am only on week 6.

Is it giving anyone else tummy troubles, the mega high dosages that is?

Posted 6/15/2011 11:45 PM (GMT 0)
I really do notice a difference when i take it....I think it adds in minimizing sadness. Whether that is a placebo affect or it actually does it I don't care.

It probably is not placebo. Besides colds, flu, fibromyalgia, arthritis, etc., vitamin D3 is also helpful for depression.


I am on 50,000 weekly for 8 weeks. It seems to really bother my stomach the day of the dose.

Usually the 50,000 IU weekly dose is vitamin D2 which is slightly different than D3 which is more natural. Maybe you could ask your doctor if you could have taken 7,000 IU each day of D3 instead.

It would still end up at a weekly dose close to 50,000 but perhaps the gradual dosage would have upset your stomach less. Of course it probably would not have been by prescription and paid by health insurance but D3 is not very expensive out-of-pocket.

Post Edited (BabeintheWoods) : 6/15/2011 5:55:18 PM (GMT-6)

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