Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Vitamin D Deficiency

Hi I don't post very often. I was just wondering if vitamin D deficiency is common for AS. I am going to the city to see rheumatology tomorrow. My family doctor called about my blood work last week and now I have to go to this appointment.

Thanks guys. I know you folks will know

Lila

in a word:

YES!!!

I could never convince my GP or 2 previous rheumies to test my Vit D level (we're talking 10-15 years ago here.......)

I had done lots of medical journal reading and was convinced that a low Vit D level would accelerate bone loss / redistribution in AS - but none of them were interested!

Fast forward to 5 years ago when I jumped ship yet again and found the rheumatologist of my dreams - a real AS expert who had done research into AS and kept up to date with new findings. First visit he tested my Vit D level..... 4 days later I got a call from his rooms to say that it was almost unrecordable and they gave me a regimen for trying to get it *into* the therapeutic range within 8 weeks. He had them send me a path slip to get it done again, ring for the result and again I was given a schedule for getting it into the *TOP 1/3* of the reference range. It was a slow process to get it stable.

Now that's where he wants ALL his AS patients to have theirs AT ALL TIMES.

Research has shown that there are Vit D receptors on the surface of EVERY cell type in the human body. Research has not yet determined why some cell lines NEED Vit D, but it clearly has a very important function within our cells. I had only researched its role in osteoclast and osteoblast activity (bony reorganisation) and that alone was enough to make me continue to push to have it tested - one pissy little test - SO MUCH OPPOSITION to getting it done! SO glad I persisted until I found a medical expert who agreed with me and didn't think I was just annoying and paranoid!

It seems that WE must take a far greater interest in our health and wellbeing than any medico - as well we should, given that it is OUR body in order to get the best treatment strategies and outcome!

Thank you for answering. My vitamin D was in my boots. It's very early in the morning here. I am leaving to go to to rheumatology now. I appreciate your answers.

Lila

My vitamin D is very low but I seem to have an increase in pain whenever trying to take it. My NP thinks its due to my leaky gut.

My vitamin D is deficient - I have a malabsorption issue to vitamin D - Dr(s) have not figured out yet why I can't take vitamin D to rebuild.

Hugs
Gerri & Makaylah

Louise,

Why do you think that is? What have you read as to the reason?

I think for me it is at least partially because of improper absorption of my food and nutrients (I've seen that happen when I was flaring badly and had the diarrhea and undigested food).

Also, having NAFLD due to metabolic syndrome, wonder if that plays a role as well. Have read that the vitamin D (supplements, in food, and by the sun) all get processed in the liver and a damaged liver can't properly process the D.

Do you think in spondys its mostly a matter of malabsorption? or something else?

Do not know if low D is common with AS. On blood work mine was down to 17 R- Doc recommended that I take D. I have been taking 6000 a day since then and D is now up to 56.

I don't know about AS, but my nuerologist chewed me out at the last appointment for not taking vitamin D suppliments every day.

Mine was low too. I got it up to 37 by taking 2500 daily and when I stopped it fell to 25 again. I just bought 1000 ius, plus my multi vit has 400 and I drink a lot of almond milk that has it too. I believe that above 50 is optimal.