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Vitamin D low but in remission, should we increase?

Jmrogers4

Jmrogers4

So Jack's labs just got posted from his infusion last week. His GI is out of town so I'm sure he will call but probably not until after New Years.
We pulled for Vitamin D levels as we had not tested for some time. He takes daily 1000mg and it came back at 26. Normal range 30-100.
He has no symptoms feels great, is growing and just overall doing fantastic (knock on wood, throw salt, etc. etc.) Should I worry or more importantly how much should I worry? Is he just not absorbing?
 
my little penguin

my little penguin

Moderator
Staff member
Ds was fine Gi wise but on 1000 IU still stayed around 21-26.
Regardless for the past three years whether we supplmented or not .
He never got in the normal range .
Rheumo ok'd us to raise it to 2000 IU a day.
Finally up to 67 ( range 30-100 normal ) at last blood draw last week .


I hear 70 is optimal for Ibd kids.

I think some kids just need higher doses sometimes to get there
Obviously talk to your Gi before changing anything.

Ds has multiple inflammatory processes ( arthritis asthma crohns limbal conjunctivitis atopic dermatitis....etc) so for him I wanted it in the optimal range .
 
D

DanceMom

Hmmm......given that he supplements and it is still low.....I wouldn't like that. But I tend to worry when the docs don't. A tends to be in the 30-40 range, but we don't supplement and her GI is okay with that for her. Definitely ask the GI and keep us posted.
 
A

araceli

For my kids 1000uils don't make their levels go up. Even 5000uil's did not make a lot of difference . They are on 10000 now and hopefully we get results. How long ago did he started with the 1000? What was his Vit D level before he started taking it? Usually it will take 6 months to see an increase on levels.
 
Jmrogers4

Jmrogers4

He's been on supplementation for almost 2 years I think. He was at 44 a year ago last time we tested which is highest it has been. He was at 23 the first time we had it tested, tested again after 3 months and it was at 33 then 44 a year ago. So not sure why he is low. Never heard of it but something to do with remicade? Only thing I can think of that has changed besides his height/weight would that make a difference?
 
A

araceli

Good Question. My daughter with crohn's and on remicade has higher levels than my son who has not been Dx with crohn's. I have always wonder why my son is not absorbing Vit D.
Ask your GI for an increase and see if it makes a difference.
 
Catherine

Catherine

Moderator
We are supplementing my 15 year old daughter with 1000 mg per day this keeps her levels at low end of normal. She does not IBD.

Were the previous tests done at this time of year? You would expect the vitamin d levels to be there highest at the end of summer and their lowest at the end of winter. Maybe the dose needs to be increased for the winter months.
 
DustyKat

DustyKat

Super Moderator
My personal belief is you should be aiming for at least 70 (120 Aus) with IBD regardless of disease status. With my two it is an absorption issue.

The other thing to have a think about in regard to the fluctuating levels is the time of year you are testing. Summer testing should produce higher results and Winter lower unless you live in a mild/tropical climate.

Dusty. xxx
 
griffin123

griffin123

Nathan just had his vitamin D checked at his last infusion too and Dr. Burpee sent me a message saying his was at 27. He said that was low too and he wanted it above 30. He asked if N has not been taking it because he has a habit of "forgetting to take some meds" but N ran out for a couple weeks and I would forget to pick some up from the store so that was my bad. Dr. Burpee said we could increase how much he takes since he's had such a big growth spurt this last year. I would talk to J's GI when he gets back and see what he says.
 
Jmrogers4

Jmrogers4

Thanks Griffin, Jack saw Dr. Burpee last week since Dr. Ellison is out so just waiting for a phone call. Jack is pretty good about taking his Vitamin D, does it every morning with breakfast so he might forget on a Saturday or Sunday but not very often since we keep them in a pill box and load it every week, it's pretty easy to check.
I guess a few days before we increase won't hurt but I might send an email on Monday just checking in and asking so we don't get lost in the shuffle of returning from vacation
 
Susan2

Susan2

Even in winter you can give VitD levels a boost naturally, if the sun is shining. Rug up, but leave arms and, if possible, legs bare. Run around, garden, play or just sit on a chair with arms on the chair arms and feet up on a stool. You will probably still need to supplement but two or three hours a week will do great things for VitD.
 
fewdalord

fewdalord

There are studies that vitamin d levels brought up by supplementation can lessen crohns symptoms. The level you want to shoot for is 60-70. Above that there is no increased benefit. You'll need to have blood level checked after supplementation because vitamin d can accumulate in the body. Taking 5,000 PR 1,000 is not gonna get your le el up from say 20 to 70. I take 50,000 twice a week to maintain my level. Higher doses are required when you're way low and/or have had bowel resection(s) which impedes absorption. You can get 100/of the 50,000 from amazon for around 23.00. It is extremely important to maintain your levels. I have had minimal symptoms for 5 years due to maintaining g a level around 60.
 
Clash

Clash

I don't think that 50,000 IU twice a week is a requirement for everyone. My son had a low d level, maybe 18, any way he took 2000 a day of D3 and after 6 months he was at 62. He is now at 68 and at this time doesn't supplement. He'll test again end of February so we will see what winter and no supplementation has done.
 
fewdalord

fewdalord

Didn't say 50,000 twice a week was necessary. Everyone is different. Some have had resections. But many people fail to reach the optimum range because they take too little.
 
Clash

Clash

Malapsorption can he an issue areceli but I'm not sure how you determine. C raised his level while he was undoubtedly having absorption issues since it was before his resection. Still he did fine with the 2000 IU dose a day. I should also add that being a teen and also not putting much stock in vitamin supplementation I can almost guarantee he probably wasn't vigilant.

Had any of his tests come back showing that his D level wasn't climbing I would've upped the dose and wrenched vigilance through bribery HA!

But here's an oddity, my D level(not an IBDer) was really low like 14 I tried supplementing with C's D3 but wasn't seeing an increase. I had the give me a px, it was for D2, high dose. In for months I was at 40 so I switched back to D3, next vitamin level check it had dropped again. It really doesn't seem to matter if I up the dose or eat it with something fatty. I'm just an oddity I guess because D3 is supposed to be easier for absorbstion than D2.
 
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my little penguin

my little penguin

Moderator
Staff member
I use d3 sine brands didn't not work for me(non Ibd).
Other brands work for DH.
Ds did not get high enough despite 1000 a day .
I put it in his pillbox so I knew if it was taken
His levels stayed at 25 even in summer .
Once on 2000 a day it took two months to go up to 64.
His arthralgia is also better after his vit d leveks moved up .
 
Jmrogers4

Jmrogers4

So sounds like based on what had been said here were looking at 2000 a day and see, since I know he is taking it most days, we're outdoorsy people so even in winter he is doing outside activities most days, well not today because it's like 9°F. Waiting to confirm with GI, just don't want to take any chances with his current remission
 
C

crohnsinct

Well-known member
O does 2000 a day also.

I (non IBDer) and also chronically low. Supplemented with 1000 and barely moved but then they found out I was low on b12 and then supplemented both with 2000 vit d and voila in normal range.

Always a puzzle but not necessarily an indicator that you are falling out of remission. Fingers crossed you just have to bump up the supplements!
 
DustyKat

DustyKat

Super Moderator
Good to hear Jm and I hope it does the trick for your boy. :) Good luck!

Just as a side note about Vit D at our end, I have Matt on 4000 a day and am presently looking into having a high dose capsule made up that is taken once a week or fortnight that would equate to about what he is taking now. Worth a go I reckon. :ybiggrin:

Dusty. xxx
 
Catherine

Catherine

Moderator
My GP has just put me on 4000mg Vitamin D per day. Previous GP pull me off Supplements when level got to 51 from a low of 24. Note these are Australia levels.
 
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