I will be shortly start trialling taking high dose vitamin D to see what it will do to my symptoms.

My first step is to test if I am actually deficient in vitamin D. I ordered a kit online. In the UK for 25 pounds (30 if you want it delivered to other parts of the world). They send you a card, where you put four drops of blood onto. You then have to post it back to them. The result should take less than a week. You can order it from here : [url=UK online vitamin D test]http://www.vitamindtest.org.uk/[/url]

If you live in the USA, you can have something similar done for 65 dollars from this other place, the link of which is here : [url=USA home vitamin D testing]http://www.zrtlab.com/vitamindcouncil/[/url]

As time goes, I will share my experiences and thoughts on vitamin D on this thread.

i hope an increase in D helps you

my D was down around 30 and i've gotten it back up into the 60s, and its been everywhere in between depending on how much i take / how my bowels are doing.

haven't noticed a correlation myself in vit D levels and how i feel.

but with that said, i think its one of the things that is important to keep at "the proper level".

but for me, not the major piece to my puzzle.

When I was first diagnosed, my Vit D levels were low (16.2 ng/mL). I ultimately started supplementing with cod liver oil and routinely get tested.

I've been all the way up to 100 ng/mL, and had to dial back the vitamin D a bit. In the warmer months, I try to get some natural Vit D from the sun by hiking bare back. (Sorry for the graphic.)

It's unclear to me how much improving my Vit D levels contribute to my recovery.

What I can say is that my inflammation markers are normal, and that I have yet to get sick since I changed my diet.

Good luck with your experiment.

Why do you need to pay so much when you could have your GP order it in a routine blood examination??? Surely the NHS would charge less.....

When I was first tested my results were way below the reference range - 23! (N = 50-120). My rheumatologist rang me straight away and ordered the level of daily supplemantation he thought I would need to get them therapeutic in less than 3 months.

I had them tested @ 6 weeks, then again @ 3 months and 5 months and had the dose adjusted twice prior to getting reviewed by him. We kept titrating until they were in the top 1/3 of the reference range, which is where he insists all his AS patients have them. It took 12 months, in the end.

Apparently science / research has shown that there are Vit D receptors on the cell membrane of *every* type of cell in the body - they don't yet know WHY they are there for all cell lines, but he figures it is vital for optimising health.

3 years on, I still take 3000 IU daily to keep them there.

I have to say that having therapeutic levels of Vit D have not CURED me, nor can I say I feel "zippy" as some report, but at least I have it there for my cells to do whatever with!

WOW Louise, you have a good rheumy. None of mine have *ever asked for my levels to be checked - and neither had any of my doctors. Don't think that is a norm request in the UK nor here in France. It was only back in Dec, when I changed my GP that my new GP wanted my levels checked. Came back at 9ng/ml - dangerously low! Am now on supplements and will get rechecked next month.

I had argued with my GP about it for some time.....given that I'm of Anglo-Saxon colouring, grew up in the arid outback, had a BCC removed from my back before the age of 40, but have been studiously avoiding the sun for 20 years..... I thought it should be checked as a matter of course, DESPITE me having a spondyloarthropathy, but he wasn't interested.

My (latest and best by far...) rheumatologist, on the other hand wanted to know my Vit D level shortly after he introduced himself: "Hello Louise - I'm Roland Ebringer"

It seems that Mr & Mrs Ebringer brought their sons up to be good at whatever they do!

The problem is that your doc maybe reluctant to order the test, as there is controversy as to who should and should not be screened for vitamin D deficiency. The above link is a NHS link, so is probably the cheapest way to privately check for vitamin D ....

There is considerable controversy about vitamin D and auto immune disease. I think low levels are found in auto immune diseases. The question is, does low vitamin D cause auto immune disease, or is it that having auto immune disease make you have low vitamin D (i.e. may be those with auto immune disease stay more at home and therefore have less sunlight, causing low vitamin D.)

An Ebringer - should have remembered that you were with one of the greats.

Yes, they know where it is happening from - far more so than the Fr. do over here