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09-08-2012, 09:49 AM   #1
kiny
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Vitamin D

I'm at 42.5 ng/mL, it's too low still I believe.

Where is your vitamin D level at atm? Thanks.
09-08-2012, 12:55 PM   #2
littlemissh
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Mine is 39 despite being on 1600 iu vit d. There is a huge amount of debate about vitamin d levels and at what level you should aim for. It is thought below 30 is considered subnormal, above 80 is fine but the in between area is very grey.

There have been so few trials into effects of differing levels of vitamin d that a consensus opinion based on good quality evidence is difficult. There are some trials showing too high levels can cause disease as well so doctors are naturally wary of causing more problems.

The general agreement at the moment is that more studies are needed.

There has been huge amounts of discussion in the british medical press/journals/blogs recently about it because of this confusion and the difficulty is that there is no answer yet.

So its watch this space.
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09-08-2012, 01:01 PM   #3
David
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82 ng/ml



I know that low vitamin D isn't the cause of Crohn's disease and other IBD, but when it comes to its pathogenesis, I believe that it is a corner piece in the puzzle.

There are some trials showing too high levels can cause disease as well so doctors are naturally wary of causing more problems.
Unless someone has kidney or some other rare issues, any sort of toxicity below 100ng/ml is EXTREMELY rare and I don't think I've ever seen anyone here with a level above 100. Vitamin D should be treated like any kind of medication. Levels should be routinely drawn (along with calcium levels) and dosage should be adjusted to meet ideal serum levels. If side effects are noted, then dosage can be further adjusted. Ideal vitamin D levels are SO IMPORTANT to both physical and mental health. It should be one of the primary goals of a physician's treatment regimen. I can post studies all day long about the benefits of vitamin D and new ones are coming out all the time. Conversely, toxicity is extremely rare. We have to weigh the benefits versus the risks and in the case of vitamin D, the scale doesn't just tip towards benefits, it's stuck there and getting heavier all the time.
09-08-2012, 01:32 PM   #4
littlemissh
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I would agree with you. There is a lot of evidence to show that vitamin d is important but the question that remains difficult to answer is what is the optimum level of vit d for health.
There was a big move to using vit b6 for many diseases/symptoms and it helped people but after a few years it was noted that people were developing neuropathy and this was only obvious after being on it for some time. Same with vit a in pregnancy...eat liver its good for you...yet it was found to cause vision defects...too late for some people before it was noted.
So sure it may well cause good effects but until we know for sure that long term higher levels are safe we should be cautious.

Thats my opinion anyway, I'm sure that others have their own take.
09-08-2012, 01:43 PM   #5
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You're certainly correct and in all cases, the problem is that we're bypassing the NATURAL forms where the body has natural controls that prevent toxicity. It's literally not possible to get too much vitamin D from the skin/sun whereas the supplemental form bypasses the body's controls. Same for so many other vitamins as well (one of the many reasons I'm not a fan of multi-vitamins) and I think they'll continue to find side effects we're not aware of.

The upper limit (which is the level that most scientists agree provides for a degree of safety) is 100 ng/ml. I think you'll have a VERY hard time finding anyone anyone above 100 ng/ml here. As mentioned, I've never seen it.

Proper sun exposure is by far the best way to get your vitamin D. But with the mounting evidence regarding the importance of vitamin D, I again think it comes down to risks versus benefits. And studies thus far showcase that toxicity is rare and requires some serious abuse to attain for most.
09-08-2012, 02:00 PM   #6
littlemissh
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It amazes me how something that is clearly a very important factor in lots of our body systems can hide under the radar for so long. The problem is that we discover how important it is eg vit d but because it has always been ignored no-one has really studied it in detail to give us clear guidance.

I know of someone who took black cohosh as it was all the rage for menopausal symptoms and she developed irreversible liver failure after a week of taking it and ended up with a liver transplant. And the soy milk for babies fad where lots of people thougt soya milk was better than cows milk - and lots of babiy boys became oestrogenised and developed breast buds and fertility problems later.

Agree with you about multivitamins - very difficult to correctly dose when using them. Also a lot of people think that taking a multivit means they don't have to follow a healthy and varied diet...just pop a pill.

I think that whilst we wait for more vit d wisdom that maintaining sensible levels of 80 (or as you say 100) is sensible. I know a couple of the london hospitals and NICE feel that aiming for 80 is the way forward until we have more solid evidence.

My gastro is being wishy washy about it and not overly bothered by my level of 39, so I have doing what you say David and having small sun top ups...not too much though because I am on aza and need to avoid too much sun..don't fancy going slate grey!!!
09-08-2012, 02:03 PM   #7
kiny
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Thanks

I try to see the risks of vitamin supplementation in respect to the disease now, which I didn't really do in the past. As a supplement when used in normal doses it seems to be safe to me, and relative to this disease which carries very high risks, and knowing that Vitamin D might have a real positive impact on my disease I am able to put the risks into perspective I feel and the risks seem very low so I supplement with vitamin D (1000 UI / day atm).

If I had no disease I would have never considered supplementing, but now that I have some type of disease, I thinks this changes things and now I do find it worthwile to supplement.
09-08-2012, 02:04 PM   #8
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I agree with you on all counts. However, I do not personally recommend a level of 100 ng/ml though I can see why you thought I did . Based upon the data from sources I have come to trust regarding vitamin D, I'd give anyone between 65 and 80 ng/ml a high five and anyone between 55 and 65 ng/ml a, "That's pretty darn good".

How are you doing in the sun on Azathioprine? Any problems? How much time do you spend in it and what time of day? Thanks
09-08-2012, 02:06 PM   #9
David
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I feel and the risks seem very low so I supplement with vitamin D (1000 UI / day atm).
Do you get much sun exposure where most of your skin is exposed and no suncreen?

Either way, I suggest giving this a read as there's a very good chance you're just maintaining your level if you're not getting good sun exposure.
09-08-2012, 02:08 PM   #10
littlemissh
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Another point to bear in mind is that people with crohn's, particularly small bowel have problems with absorption so need a higher oral dose of Vit D to improve their blood levels of vitamin d. As I mentioned before I am on 1600 iu and yet my levels are only 39...probably due to malabsorption.
Kiny it would be worthwhile getting your levels rechecked after being on 1000iu for a few weeks to see if you are absorbing it and improving your levels.
09-08-2012, 02:09 PM   #11
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Good point littlemissh -- I also think the article I linked above would be worthwhile for you

VVV Kiny, I edited in a link you may not have seen in my post above.
09-08-2012, 02:09 PM   #12
kiny
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A bit less now since I am now back in Belgium, in Barcelona (Spain) my sun exposure was much higher and the sun is also higher up in the sky, which as I read impacts the amount of vitamin D you are able to receive. I do not know if 1000 UI is enough, if it's not I might use 2000 until my lvl is ok again, although I was biased scared of supplements since my dad had liver issues, even though it had to do with his alcohol abuse, so yah.
09-08-2012, 02:12 PM   #13
littlemissh
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Cross posted David, I only go out without sun screen first thing in the morning and last thing at night as I am very pale skinned and easily burn. I have had no probs so far.
AZA and sun can as I mentioned cause your skin to become pigmented slate grey...don't know how that happens!! , but also increases your risk of skin cancers in the longer term so I am very careful. Not too difficult in old blighty as the sun is often hiding :-(

Last edited by littlemissh; 09-08-2012 at 02:13 PM. Reason: spelling...doh!
09-08-2012, 02:15 PM   #14
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I haven't read any good studies as to why Azathioprine causes problems with sun exposure either. I bet the eventual answer is going to be quite fascinating though and will once again showcase how little we know.
09-08-2012, 02:28 PM   #15
littlemissh
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I think as far as skin cancer goes its because its an anti metabolite so thought to interfere with the dna in rapid turnover cells such as the skin. The slate grey thing I have no idea. I might do a quick search!!

Thanks for the article...interesting as it pretty much mirrors our discussion.

I quite like medscape. There was an editorial on vitamin D in the BMJ in the last few weeks which was a good discussion but didn't really give any recommendations at all in the end so I was quite disappointed. Usually it gives a summary of recommendation...but I suppose this just reflects the uncertainty at the moment...which is well reasoned in the article you linked to.

Sorry for hijacking your thread Kiny!
09-08-2012, 02:30 PM   #16
kiny
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Sorry for hijacking your thread Kiny!
not a hijack, I like discussion
05-02-2013, 10:31 PM   #17
Maree.
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I know this is an old thread but I'm really confused by my son's vitamin D result and would love to hear any thoughts you may have.

A little background: Liam aged 10 is currently undiagnosed. His Pediatric GI says he definitely has a nutrient absorption problem but as yet weíve not sorted out cause. We are part way through a fairly complete set of scans. (Barium Follow Through X Ray & Colonoscopy done, Upper Endoscopy, MRI & Pill Cam planned).

Liamís 25-OH Vitamin D is 27.7 ng/ml

Iíve checked his current supplements at present only he's only getting about 400 IU Vitamin D per day from these.

But Liam is a sporty/outdoorsy little boy and we live in Dubai where we avg 8 hrs bright sunlight a day in mid Winter and 11 hrs bright sunlight a day in Summer.

Iíve added up his outdoor time, walking to and from school, recess, lunchbreaks, sport classes, football sessions and it averages about 2 hours day. He wears a cap about half the time but lives in shorts & t-shirts all year around. School doesnít take the sun smart message seriously so he doesnít see sunscreen as often as he should and heís browner than Iím happy with. He is fair skinned with fair hair and blue eyes.

Liamís Pediatric GI is from Vancouver in Canada (not sure how long he has been in Dubai), and doesn't seem to have an issue with Liamís Vitamin D level in fact he told me he thinks itís TOO HIGH for Crohn's to be a likely cause of Liamís issues.

But I dont understand how an outdoorsy child living in this climate can have a vitamin D level that low.
05-02-2013, 10:41 PM   #18
David
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What percentage of the time do you think he uses sunscreen?

He may be deficient in vitamin D cofactors.
05-02-2013, 10:57 PM   #19
Maree.
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For that normal 2 hours daily activity - almost never. I send it to school for sport but find myself constantly complaining that the levels of sunscreen in the bottles never goes down.

If we are going to the beach or hiking and having hours out in the sun in a single block then we get the sunscreen on him.

His levels have not been tested for any of the vitamin D cofactors, so perhaps that's the problem.

Last edited by Maree.; 05-02-2013 at 11:06 PM. Reason: typo
05-03-2013, 10:02 AM   #20
araceli
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Hi, my daughter Vit D was 23 she has Crohn's since 2011, my son Vit D 17, he was recently dignosed, with early stage crohn's. The test were done one month ago. Plenty of sun here. No sunscreen use. Normal range in here is 30-100. I am giving them 5000 IU a day.
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05-03-2013, 10:13 AM   #21
Maree.
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araceli did you get the cofactors checked with your kids? If so did they have issues with those too?
05-03-2013, 11:46 AM   #22
araceli
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I don't think so. Only things checked were Folate levels (high) B12 (in range) Vit D 25 Hydroxy(low) and Vit. D 1-25 Dhrx. ( in range).
05-06-2013, 02:09 PM   #23
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Last year I was at 11! I was put on 50,000 mgs weekly. I now take 2,000mg/day. I am teetering on 30 right now.
05-07-2013, 11:00 PM   #24
tots
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I get a good mount of sun without Sun screen. I need some color to feel healthy!

My level was 18, I take 50,000 a day of vit D. I should find out my level tomorrow. Let's
see what all that did for me.

I was Dx 22 yrs ago. It wasn't until I read David's warnings about these issues before I
was tested. I have had some pretty good docs. I just think in general CD once diagnosed is still an under treated disease.

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05-09-2013, 10:52 AM   #25
araceli
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My Daughter never had her Vitamin D tested until I ask Dr about it. So he agree and order the test for my son too. Thanks to David and all of you, I found out about the importance of Vitamin D. THANKS!
05-15-2013, 08:05 PM   #26
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My vitamin D level is 23.9 but my GI didn't say anything about it being low. I found out by looking up my results. Should I be taking a supplement?
05-16-2013, 09:57 AM   #27
araceli
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I will say YES. Call your GI and tell him, you notice your vitamin D levels low, and if he thinks you will benefit from a supplement.
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