How much vitamin D do you take?

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cupcakespinkgal
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   Posted 11/1/2010 7:28 PM (GMT -6)   
So I finally got my D levels checked and they are low. My tests showed my D level is 21.3. The more research I have been doing it is recommended to keep your level at a minimum of 50 especially in the winter. It kind of made me mad that it hasn't been checked before. Especially since the last year I have had such a hard time with flares.

My question is how much D3 do you take daily? If you have tested deficient has anyone on here taken a 50,000 IU dose prescribed by their doctor?
Diagnosed with Crohn's in 1998, father has UC we were both diagnosed at 20 yrs old.

Meds ~ 1g Sulfasalzine, 4.5 mg LDN(transdermal)
Supps ~ Jigsaw Essential Blend Probiotics, active B complex, SRT vitamin C, SRT magnesium, D3, and multi-mineral. Tart Cherry Juice.

Previously on Remicade, stopped Humira after 9 months, wasn't working. No surgeries so far.

Post Edited (cupcakespinkgal) : 11/1/2010 7:56:52 PM (GMT-6)


njmom
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Date Joined Apr 2006
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   Posted 11/1/2010 8:25 PM (GMT -6)   
Each Crohn's patient is quite different in terms of how much vitamin D they manage to absorb, so there is no "one size fits all" rule for dosage.
 
You can start out with 1,000IU vitamin D3 (not D2) daily and then have a blood tests done after a couple of months, to see whether it rose enough. If not, you could try going to 2000IU daily.    

cupcakespinkgal
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Date Joined Jun 2010
Total Posts : 720
   Posted 11/1/2010 8:55 PM (GMT -6)   
My doctor thinks I should take a 50,000 IU pill once weekly for 2 months and then see if a maintenance dose of 1,000 - 2,000 would keep my levels steady. 1,000 IU is considered a maintenance dose and not enough if you tested deficient.

I guess it just freaks me out to take a dose of 50,000 all at once even though I know that is usually what is prescribed to someone who really needs to raise their levels. I probably should add to my first post about the 50,000, I guess I was really wondering if anyone of Crohn's or UC has been prescribed the 50,000 and taken it.
Diagnosed with Crohn's in 1998, father has UC we were both diagnosed at 20 yrs old.

Meds ~ 1g Sulfasalzine, 4.5 mg LDN(transdermal)
Supps ~ Jigsaw Essential Blend Probiotics, active B complex, SRT vitamin C, SRT magnesium, D3, and multi-mineral. Tart Cherry Juice.

Previously on Remicade, stopped Humira after 9 months, wasn't working. No surgeries so far.

MMMNAVY
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Date Joined Jul 2006
Total Posts : 6923
   Posted 11/1/2010 9:06 PM (GMT -6)   
I have been on 50,000 units a week for years. It helps with my bone pain.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders: All comments have the caveat contact your local health care provider.
I will find a way or make one. –Phillip Sidney 1554-1586
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susans53
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Date Joined Jun 2010
Total Posts : 218
   Posted 11/1/2010 9:09 PM (GMT -6)   
I've been taking a 10,000 dose once a week for about a year. My levels rose but still on the low side. My doctor wants to also raise it to 5,000 a day for 2 months as well.
UC 1996
5 asa, predisone, 6 mp
X-mas present- Dec 26, 2000, Emergency j-pouch surgery
Multiple complications, J-pouch redo- July 3,  2001.
Take down-Jan 3,  2002
Chronic pouchitis: cipro, pentassa, xifican, cortioam, canassa, leviguin, lexapro, vit D, fish oil, probiotics, lot's of other vit's
Gall bladder out-Oct 1997
Latest flare April 27 2010 Hosptial for 1 week-remciade
Possible CD, Possible pouch removal-anxiety-can you blame me?
Adhesions

Becky77
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Date Joined Dec 2005
Total Posts : 1768
   Posted 11/1/2010 9:57 PM (GMT -6)   
I was deficient so my dr put me on 10,000 once a week for 8 weeks. I have to get my levels checked again to see if I need to continue at a high level or just take 1000.
Becky

Crohn's since 1997
Surgeries: 2 Bowel resections and appendectomy
Pulmonary Emboli & Pneumonia 2009
Currently on Humira, Omeprazole, Prozac, Seroquel, Calcium, Vit D, Aspirin, B12 shots

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1883
   Posted 11/1/2010 10:46 PM (GMT -6)   

For some people, 1,000IU D3, daily, is enough to raise their vit D level - that said, the 50,000 weekly dose has traditionally been used by many docs to initially bump up vitamin D, especially when they are afraid the patient might not remember to take vitamin D every day. I don't have Crohn's, but my vitamin D was only about 8, so I took the 50,000 IU D2 weekly with no problems.

But my daughter took the 50,000 IU D2 and two things happened: increased abdominal rumbling (which worried her doc) and low iron. So she preferred to use high daily doses of D3 instead, which did not cause these side effects - about 4400 daily. (Her ability to absorb vitamin D depends on how well her Crohn's is managed.) 

Monkiray, you mean 10,000 IU D3? Susan, you are talking about D3, too, right? Not D2?

Post Edited (njmom) : 11/1/2010 9:51:13 PM (GMT-6)


kazbern
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Date Joined May 2010
Total Posts : 7090
   Posted 11/2/2010 9:59 AM (GMT -6)   
My initial tests 2 years ago had my levels at 29. I started taking 1000 iu daily and 6 months later my tested level was 38. Now I take 2000 iu daily and all of my docs are happy. I don't know what my tested level is.
*******************
48 yrs old, IBD diagnosis in spring '01. Proctitis, gastritis, ileitis.
Currently taking Pentasa (3g/day), Sulfazine (1.5 g/day), Prevacid, folic acid, vit. D (2K iu), flax seed oil (2 tsp/day), mesalamine enema as needed.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14994
   Posted 11/2/2010 10:02 AM (GMT -6)   
I take 4400 units per day. My last numbers were 45, which is right in the middle of the scale.
Gail*Nanners* Co-Moderator for Crohns Disease
Crohn's Disease for over 35 years. Currently on Asacol, Protonix, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!

Zanne
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Date Joined Apr 2005
Total Posts : 3763
   Posted 11/2/2010 11:36 AM (GMT -6)   
I've been taking 50,000 IU weekly for years, with no side effects. However, my D levels are still too low, so my doctor has advised me to add daily D3 as well as the weekly dose. I now take 5000 IU daily in addition to the 50,000 weekly dose. I am checked every six months and my levels are still low. Things move through me at such a pace that there is not enough time for my body to absorb them fully. I think this is one of the reasons why this is such an individual disease. If the doctors tested what came out of me, it would be rich in nutrients because most of my supplements are flushed down the toilet!
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....

cupcakespinkgal
Veteran Member


Date Joined Jun 2010
Total Posts : 720
   Posted 11/2/2010 4:00 PM (GMT -6)   
For those of you that are on a high dose or have taken a high dose was it D2 or D3? I know a lot of the D prescriptions are D2, but that isn't as beneficial. The supplement I was instructed to take is 50,000 D3 once a week.
Diagnosed with Crohn's in 1998, father has UC we were both diagnosed at 20 yrs old.

Meds ~ 1g Sulfasalzine, 4.5 mg LDN(transdermal)
Supps ~ Jigsaw Essential Blend Probiotics, active B complex, SRT vitamin C, SRT magnesium, D3, and multi-mineral. Tart Cherry Juice.

Previously on Remicade, stopped Humira after 9 months, wasn't working. No surgeries so far.

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1883
   Posted 11/3/2010 1:26 PM (GMT -6)   
Are you sure 50,000 is D3? The traditional 50,000 dose is D2, NOT D3. 
 
I edited this post because I double checked and there IS a clinical trial comparing 50,000 IU D2 to the same amount of D3 (the D3 dose was made up of ten 5,000IU pills). Both types of D were absorbed at the same rate initially, but the D3 seemed to have greater staying power, over time. The same trial concluded vit D2, at 50,000 IU, was equivalent to no more than 15,000 IU of vitamin D3, and probably not even that - more likely, only 5,000 IU D3. 
 
Anybody taking a 50,000 IU dose of cholecalciferol is not taking the traditional 50,000 dose, which has always been ergocalciferol in the States.  
 
The link goes to the guidelines of the vitamin D council: http://www.vitamindcouncil.org/

Post Edited (njmom) : 11/3/2010 1:41:51 PM (GMT-6)


janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 11/3/2010 1:54 PM (GMT -6)   
Wait, let's back up and hear the doses AND if it's d2 or d3. I'm especially interested in the weeklies, myself!
strictures from adhesions from endo. Pyoderma Gangrenosum.
LDN 4.5mg since 5/09 - crohn's in remission.

Zanne
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Date Joined Apr 2005
Total Posts : 3763
   Posted 11/3/2010 2:01 PM (GMT -6)   
Sorry burst your buble, but ALL of my D is D3, both RX 50,000 IU weekly and my DOCTOR recommended daily supplement of 5000 IU. AND my level is still low. So it is purely individual. I just can't absorb things. Blanket statements do not work for Crohn's patients or for that matter anyone. The only way to know what you can tolerate is to have your levels checked and monitored by YOUR doctor.

As I stated before, I have been on the weekly for years. Probably over a decade. The daily, probably 4 - 5 years and get checked every 6 months or so. I do get sun exposure and drink fortified milk as well.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1883
   Posted 11/3/2010 2:14 PM (GMT -6)   
Suzanne, what is the name of the 50,000 IU prescription? What does it say on the bottle - cholecalciferol? So even with the weekly and daily your vitamin D is still low? What number is it? 
 
Btw, a 5,000 daily dose D3 is not unusual or worrisome. My daughter tried it - the problem is, too high a dose of vit D can be counterproductive. She actually did better on 4,400 than 5,000+.

Post Edited (njmom) : 11/3/2010 1:47:38 PM (GMT-6)


cupcakespinkgal
Veteran Member


Date Joined Jun 2010
Total Posts : 720
   Posted 11/3/2010 2:44 PM (GMT -6)   
My 50,000 is D3, cholecalciferol. In my research I have read more than once that 10,000 D3 daily is safe, that would be 70,000 a week which is less than the 50,000 a week I will be taking.
Diagnosed with Crohn's in 1998, father has UC we were both diagnosed at 20 yrs old.

Meds ~ 1g Sulfasalzine, 4.5 mg LDN(transdermal)
Supps ~ Jigsaw Essential Blend Probiotics, active B complex, SRT vitamin C, SRT magnesium, D3, and multi-mineral. Tart Cherry Juice.

Previously on Remicade, stopped Humira after 9 months, wasn't working. No surgeries so far.

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 11/3/2010 2:47 PM (GMT -6)   
It just says D3 not specific as to what type. Even my paper work for the Rx is not specific as to the type.

Zanne
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Date Joined Apr 2005
Total Posts : 3763
   Posted 11/3/2010 2:56 PM (GMT -6)   
Sorry only answered half the question. Yes with all the supplements, my D level is still low, I don't remember what the number is. I really don't pay as much attention to my numbers for anything as I probably should. I started out supplementing daily with 1000IU a few years ago, but my doctor told me my D was still too low, so I upped to 2000IU. I have consistently been low, so I went up to 5000IU about 8 months ago when I found some at the GNC. I was tested in August, still low. I will be tested again in early 2011. If my D has gone up, I will back off my daily intake and continue my weekly dose.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1883
   Posted 11/3/2010 3:02 PM (GMT -6)   
Suzanne, thx. It's quite possible that if Crohn's is not brought under control enough by meds or diet, no amount of supplementation will work for a Crohn's patient. Dr. Abreu did groundbreaking research in vitamin D that suggested it's the disease, itself, which interferes (and I'm not talking about malabsorption).     
 
Cupcakes, Yep, I've seen 10,000 IU daily is fine, too. Of course, a daily dose is not the same as an all-at-once dose...that said, there didn't seem to be any evidence from the clinical trial that the 50,000 IU vit D3 is not safe. Your post did suprise me because while I'm used to seeing numbers like 5,000 and 10,000 for vitamin D3, I'm not used to seeing 50,000 taken as D3. This is not routine in the States. 
 
At least you are in the low 20s. My daughter has to take 4,400 daily just to manage to stay higher than the teens. At 5,000+ she actually measured lower, back in the teens.
 
Nanners, thx for the reminder.  

Post Edited (njmom) : 11/3/2010 2:15:56 PM (GMT-6)


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14994
   Posted 11/3/2010 3:03 PM (GMT -6)   
Mine is D3 also. I think in my and Zanne's cases we are a little different than some of you because we have had multiple resections, so we do not absorb the same as some one who has not had resections. Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease
Crohn's Disease for over 35 years. Currently on Asacol, Protonix, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!

IamCurious
Veteran Member


Date Joined Jan 2010
Total Posts : 2223
   Posted 11/3/2010 5:29 PM (GMT -6)   
FYI, Vitamin D overdose from eating his own supplements that he sells:

NEW YORK, April 28 (UPI) -- Alternative-medicine advocate Gary Null has sued the New Jersey manufacturer of his Ultimate Power Meal, saying he almost died from a Vitamin D overdose.

Null filed a lawsuit in New York Supreme Court seeking $10 million from Triarco Industries Inc. of Wayne, N.J., the New York Post reported.

In legal papers, Null's lawyers say he suffered from fatigue, pain and cracked and bleeding feet while taking Gary Null's Ultimate Power Meal. He continued to eat the power meal,, "thinking that it would help him and relieve his condition."

After a visit to his doctor, Null discovered he had been ingesting 2 million international units of Vitamin D every day, 2,000 times the recommended dose and 1,000 times what the power meal was supposed to contain, his lawyers said. Clearing the excess from his system took 3 months.

"Six consumers were hospitalized with severe kidney damage, and Null, in the midst of all this, while he was suffering in bed, had dozens of his customers calling him, along with condemning and threatening him," Null's lawyers said.

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1883
   Posted 11/3/2010 11:57 PM (GMT -6)   
Babe, fascinating, thanks. Ironic. Found out more about this here http://www.vitamindcouncil.org/newsletter/gary-null-and-vitamin-d-toxicity.shtml in an article that talks about how megadoses of vitamin D were used in the 1930s and 1940s, until it was clear such doses (for instance, 1 million units D2 a day) caused toxicity.

RedSoxGirl85
Regular Member


Date Joined Jun 2010
Total Posts : 265
   Posted 11/4/2010 7:39 PM (GMT -6)   
I get an RX from my PCP to take 50,000 IU once a week. Honestly haven't noticed it helping me at all I'm always still tired all the time. It brings it up but not that much same with my B12 bring it up but not too much where I would like it.

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 11/5/2010 4:58 PM (GMT -6)   
Just an FYI to you all, I take my Vit D to help me absorb more Calcium for my bones. I have tried all the Fosamax/Actonel type drugs but they all caused some sort of side effect that I could not tolerate. So my Endocrinologist put me on birth control pills (had my tubes tied years before), extra calcium, and Vit D. While technically I still have osteopenia (or osteoporosis if you count the compression fractures), my bone density numbers have gotten better or held stead for a decade. So while I don't notice any benefit from the Vit D energy wise, I certainly won't be stopping it anytime soon! And I have been able to stop the birth control pills and still hold steady. Just extra calcium and Vit D.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....

Herbert Smith
Regular Member


Date Joined May 2010
Total Posts : 117
   Posted 11/17/2010 7:19 PM (GMT -6)   
 
I started taking 10,000IU of vitamin D3 a day after reading the above article at the end of January. I don't think I missed more than 1 or 2 doses over 5 months and when I got tested at the end of May my blood level was 38ng/ml. At that point I switched to 5000IU a day and when I got tested at the end of August I was at 30ng/ml. So I upped my dose to 20,000IU a day and last week my blood test was at 54ng/ml. I am down to 10,000IU a day and will get tested in 5-6 months again.
 
It's very important to take at least 100mcg (that's micrograms) of vitamin K2 every day when you're supplementing with vitamin D. It's a co-factor. The other co-factors are 1mg of boron, 250mg of magnesium, 40mg of zinc.
 
It's important to adjust your vitamin D level to raise it to at elast 50ng/ml over a period of a few months. If you're still below 50ng/ml then you're not taking enough.
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