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Sangye
12-27-2010, 03:23 AM
I've been meaning to start this thread for awhile to make sure people know how important vitamin D is to Weggies. Your doc should be monitoring your D levels very regularly--much more than for a healthy person. Dr Seo checks mine every 3 months.

Reasons to keep D levels normal:

1) Vitamin D is even more important than calcium in protecting your bones.
Pred causes bone loss as we all know. So does inactivity, abdominal fat and poor diet-- all common with Weggies.

2) Proper levels of D have been shown to protect against flu and shorten the duration and intensity of symptoms if you do get the flu.

3) Many of our meds cause photosensitivity (sunburn easily) so we can't manufacture much D.

4) Vitamin D deficiency is very common with autoimmune diseases and may play a part in their onset and/or flares.

5) Vitamin D deficiency can cause pain throughout the body.

6) Since vitamin D is connected to calcium absorption, and calcium is an alkaline mineral that's important for maintaining the body's pH, low levels of D cause pH problems. This makes you a petri dish for all types of infections.

What type of D should I take?
If you are quite deficient in D, you may need a lot of D to get into normal range. When blood levels of D are very low, MDs like to prescribe D in the form "ergocalciferol" because they can give you much higher doses than you can get in OTC supplements. However, ergocalciferol is a poor form of D and does not act the same way in the body as natural forms.

The type of D to take is "cholecalciferol." If you are very deficient, you'll need to get a high-potency supplement from a healthcare provider (eg chiropractor, naturopath, nutritionist). Weggies often have poor nutrient absorption so you may need to take a lot just to absorb a reasonable amount.

How much should I take?
You might need a surprising amount. I've had to take 8,000 IUs just to get into normal range. But in the last couple months (due to seasonal changes), I'm too low again. I have to bump it up to a whopping 10,000 IUs a day. (OTC supplements are 200-400IUs)

Holy Petunias, is that safe?
Vitamin D is a fat-soluble vitamin, meaning your body stores it and mega-dosing can cause toxicity. You should never take high doses without regularly monitoring labs. Having said that, neither Dr Seo nor my chiropractor are the least bit worried about me getting too much.

If I live in a sunny area can I still be deficient?
Yes. Many of my patients in Arizona were D-deficient. There are many reasons why just being exposed to sun isn't enough to keep your levels in proper range. It's way too long to explain here.


Please ask your docs to measure your current D levels. It can take awhile to build it up in your body and you might need repeat testing. This is one simple way to avoid many of the winter illnesses. :thumbsup:

me2
12-27-2010, 08:43 AM
Thanks for all the info. I see I need to do a tune up on my D program. The docs I see do not take this serious enough to monitor properly without me telling them to. I give them a D on D.

Sangye
12-27-2010, 08:54 AM
Yeah, I give Dr Seo 20 gold stars for being on top of it--very unusual for an MD. I'd only give a holistic doc 10 stars for doing the same thing because we are better trained in nutrition. And I'd be really hard on a holistic doc for missing it. See? I'm an equal opportunity complainer. :wink1:

andrew
12-27-2010, 09:20 AM
Holy Petunias, thanks for that Sangye! I don't think my D level is checked at all. Will speak to the doc about it.

RPylican
12-27-2010, 09:55 AM
Thanks for posting this information Sangye! It is so timely for me. I was just at my Nephrologist on Thursday and, while all my blood work is looking very good and he considers me in remission, he did say that I was low on Vitamin D and instructed me to start taking more. It surprised me because I'm already taking 1000 IU per day (through my Calcium Citrate + tablets) but he told me to take an additional 1000 IU per day. I didn't realize this was a problem with Wegener's so I'm so glad my Dr. is monitoring this and even more happy that I have this forum where there are so many knowledgeable people out there that can keep us all informed. Thanks again!

elephant
12-27-2010, 10:13 AM
My local Rhuemy checks my vit D level too! Thanks again for the info Sangye!

freakyschizogirl
12-27-2010, 11:09 AM
I have vitamin D but it comes in with the Adcal D3 i'm taking. Lovely big chalky tablets. But i too will ask for my vitamin D stats next time i go back

Sangye
12-27-2010, 11:16 AM
I also want to emphasize that even Dr Seo (as in even an MD) agrees with the list of reasons to take D that I posted. He made a point of telling me to increase my D last week to avoid colds and flus and to see if some of my returning pain might be due to D deficiency.

Elena
12-27-2010, 02:01 PM
A month back I attended a course about WG and how to live with it, and we had a lecture by Norway's top specialist in WG. She said that some research seems to show that wegs is a lot more common in areas close to the poles, meaning areas with not so much sunlight and vitamin D. I think this is quite interesting..
Not sure if my docs is monitoring my vitamin D levels as I've never heard them mentioning it. Will ask when I go in to dilate my trachea again in a couple of weeks though. I actually started taking vitamin D supplements last week just "in case" it might be benefitial. I suppose this was a good thing, as sunlight is something to be longing for in Norway's winter time ..

drz
12-27-2010, 03:40 PM
I get 50,000 units once a week plus the usual in my multi vitamin. Is that enough?

chrisTIn@
12-27-2010, 11:24 PM
I have a good Weggie specialist.
He checks my vitamine D level and itīs allright.

So I donīt have to take extra pills.
What a relief. :flapper:

elephant
12-27-2010, 11:25 PM
I just got up and took a vitamin D and calcium pill.

Sangye
12-28-2010, 02:22 AM
A month back I attended a course about WG and how to live with it, and we had a lecture by Norway's top specialist in WG. She said that some research seems to show that wegs is a lot more common in areas close to the poles, meaning areas with not so much sunlight and vitamin D. I think this is quite interesting..
Not sure if my docs is monitoring my vitamin D levels as I've never heard them mentioning it. Will ask when I go in to dilate my trachea again in a couple of weeks though. I actually started taking vitamin D supplements last week just "in case" it might be benefitial. I suppose this was a good thing, as sunlight is something to be longing for in Norway's winter time ..
Very interesting. They've known for a long time that MS is much more prevalent in people who were born and/or have lived at northern latitudes. As far as I know they haven't correlated it to D levels and have no idea what the reason is.

I would be absolutely shocked (and pretty upset) if any MD in Norway isn't checking D levels for any patient, not just Weggies. For Pete's sake!

Sangye
12-28-2010, 02:23 AM
I get 50,000 units once a week plus the usual in my multi vitamin. Is that enough?
I have no idea. You really have to do blood work to find out. It could be too little or too much, or just right. Never guess with D.

Sangye
12-28-2010, 02:24 AM
I just got up and took a vitamin D and calcium pill.
LOL Thank goodness. Seriously though, get your levels checked, okay? Especially with little kids bringing you little winter delights.

JanW
12-28-2010, 02:46 AM
My doc checks as part of the routine bloodwork.

It's interesting that your specialist would say that about WG being prevalent in one part of the world vs. the other. At the symposium, Merkel made a big point of saying that research seemed to indicate an equal rate, and that differences may be due to underreporting/lack of access to medical care. For example, you can often read in the literature on the internet that the disease rarely strikes Asians or blacks. He said that point blank that's not true.

Sangye
12-28-2010, 03:28 AM
Thought of something else.... The prescription vitamin D pills are not only a poor type of D, but they are given as 1 dose a week (eg 1 pill is 50,000 IU). It isn't a good idea to take that much at once. Taking 56,000 IU on one day will not give the same results as taking 8,000 IUs every day. Nutrients are best taken daily for proper absorption and to mirror how they would normally be presented to the body in nature.

TBulger
12-28-2010, 07:13 AM
Thought of something else.... The prescription vitamin D pills are not only a poor type of D, but they are given as 1 dose a week (eg 1 pill is 50,000 IU). It isn't a good idea to take that much at once. Taking 56,000 IU on one day will not give the same results as taking 8,000 IUs every day. Nutrients are best taken daily for proper absorption and to mirror how they would normally be presented to the body in nature.

My doctor went so far as to call them a complete scam. I take the over the counter supplements. I found a 1,000 IU tablet that appears to work well. I don't know if it just me, but the gelcaps were not effective. I hated taking the smaller doses as I felt like I had already had breakfast after a handful of Vitamin D.

drz
12-28-2010, 11:44 AM
My doctor went so far as to call them a complete scam. I take the over the counter supplements. I found a 1,000 IU tablet that appears to work well. I don't know if it just me, but the gelcaps were not effective. I hated taking the smaller doses as I felt like I had already had breakfast after a handful of Vitamin D.

i will review this with the prescribing doctor. Thanks for the info! Its great we can pool info here and ask questions to help us each get best care we can.

Sangye
12-28-2010, 03:38 PM
I wouldn't agree that ergocalciferol is a scam. It does do something, but it's not nearly as effective as cholecalciferol.

dunkie2202
12-28-2010, 07:29 PM
I have been on cholecalciferol from the start. They discovered that my Vit D was way too low. They check my levels every blood test