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gkf109
02-06-2012, 07:47 PM
My doctors office called and told me my lab work form last week showed a very low vitamin D level I think she said it was 5, there is so much going on right now I didn't ask the questions I should have, she did call in a prescription for a supplement, I was just wondering if anybody else has this or what it means
- gary

SleepyInSeattle
02-06-2012, 07:55 PM
It's very common for people with autoimmune disorders to have low Vitamin D - though as far as I know, nobody really knows WHY.

I'm sure others will reply, but I was on 50,000iu per week for about 6 months to get into the "normal" range. It's very difficult to get your levels up adequately with non-prescription supplements.

I definitely felt better after my levels were up...the Lupus didn't go away by any means, but I had a bit more energy.

Hope that helps....

debbie-b
02-07-2012, 05:48 AM
Yes, it is very common, for lupies to have very low vitamin D levels, almost everybody, or at least the majority on this site has had it.
What it means? I don't know, but we all have one thing in common, we can't be in the sun for a long time.

Debbie

tgal
02-07-2012, 09:53 AM
From what I have learned there is a question about the Vit. D. Is ours low because of the AI disease or does it get lower because we are will and stay out of the sun? Either way, as the others have mentioned, almost all of us have that issue. The doc. will put you on some meds to bring your levels up and then, once up, most likely put you on over the counter D to try and keep it up.

Once again... just another Lupie thing

gkf109
02-07-2012, 01:50 PM
Thanks, I do stay out of the sun as much as possible, I can't drink whole milk, I don't tolerate it well so I wasn't surprised it was low, but I was doing some research on the internet about it, and I found out that a low vitamin D level could indicate a AI disease, I now know for sure that I have SLE and sjogrens, and tomorrow I am having a MRI of my brain because I am showing signs of MS, so we will see how that goes. but nothing shocks me anymore!
-Gary

Melodyroseak
02-07-2012, 10:14 PM
I found out the same way. He had me take 10,000 iu dailyfor a month and then put me down to 5,000iu daily. In Alaska we have darkness allot and can't be in the sun in the summer. Also, my Dr. told me that if I use a Happy Lite (can find at Sam's club) for a hour a day or more a day. In the morning and that helps me with depression and vitamin d

magistramarla
02-07-2012, 10:26 PM
Gary,
I'm another one who has had the low vit D. I took the 50.000 IU prescription for three months and I now take 1000 IU OTC every day.
Have you checked out the Sjogren's site? http://www.sjogrens.org/

I also had the spinal tap for MS symptoms. It was negative. It seems that Sjogren's likes to mimic MS.
Good luck with your testing.
Hugs,
Marla

gkf109
02-08-2012, 06:13 AM
Marla,
That's the problem, all these AI diseases mimic each other, my doctor suspects MS because of some of the symptoms I have. My eyes flutter real fast at times, my legs and feet are numb and tingle constantly, it never goes away, I have small tremors, when I walk down flights of stairs I feel like I am off balance and going to fall, but I am going in a couple hours to get a MRI, so we'll see what it shows, alot of these symptoms I have had for years, just thought this was normal stuff that happened to everybody, If the rash didn't show up on my face, I don't know if I ever would have went to a doctor for this stuff.

rob
02-08-2012, 06:25 AM
Marla,
That's the problem, all these AI diseases mimic each other, my doctor suspects MS because of some of the symptoms I have. My eyes flutter real fast at times, my legs and feet are numb and tingle constantly, it never goes away, I have small tremors, when I walk down flights of stairs I feel like I am off balance and going to fall, but I am going in a couple hours to get a MRI, so we'll see what it shows, alot of these symptoms I have had for years, just thought this was normal stuff that happened to everybody, If the rash didn't show up on my face, I don't know if I ever would have went to a doctor for this stuff.

Good luck with the MRI Gary. Be sure to let us know what they find out.

gkf109
02-08-2012, 06:31 AM
Thanks Rob, Glad to hear everything went good for your your dad!

rob
02-08-2012, 06:33 AM
From what I have learned there is a question about the Vit. D. Is ours low because of the AI disease or does it get lower because we are will and stay out of the sun? Either way, as the others have mentioned, almost all of us have that issue. The doc. will put you on some meds to bring your levels up and then, once up, most likely put you on over the counter D to try and keep it up.

Once again... just another Lupie thing

I too have had low Vit. D, and that's exactly how my Dr. dealt with it.

karenboss
02-08-2012, 09:52 AM
yeah, me too, but 5 is like super super low. The really good news is that it is easy to correct and you will probably notice a big difference once you get that corrected. I did.

gkf109
02-08-2012, 01:37 PM
I had my MRI this morning, than this afternoon I went to my doctor for a sinus infection, he had my MRI results,(man there quick!) It showed no signs of MS, but I do have some symptoms so he will continue to watch for it, But It did show that I have a quarter sized cyst behind my left cheek? when I get over the sinus infection he wants me to go to a ENT, just wondering if any one else has had this, I do have sjogrens, no sure if that has anything to do with it.

rob
02-08-2012, 03:31 PM
I had my MRI this morning, than this afternoon I went to my doctor for a sinus infection, he had my MRI results,(man there quick!) It showed no signs of MS, but I do have some symptoms so he will continue to watch for it, But It did show that I have a quarter sized cyst behind my left cheek? when I get over the sinus infection he wants me to go to a ENT, just wondering if any one else has had this, I do have sjogrens, no sure if that has anything to do with it.

No signs of MS is great news Gary. Don't know what the cyst is all about, never had anything like that before.

SleepyInSeattle
02-08-2012, 03:58 PM
My hubby doesn't have any autoimmune issues (thank goodness!), but he has lots of low-level allergies, and he's had to have cysts removed from his sinuses...dunno if it's the same thing. His allergist said it's from year and years of constant, low-level inflammation.

They can sometimes shrink them with meds, but if they have to remove them it's usually just outpatient surgery. Not pleasant, but not horrible. He spent a few days on the couch, and got back to activity slowly, but he felt much better afterward. Sometimes the cysts can harbor bacteria, and getting that out of your body is good, I guess - HE felt a big difference, anyway. And now he has to take nose spray and stay on top of the allergies to keep the irritation down so they don't grow back. It's mostly seasonal stuff, so he doesn't have to take stuff all the time.

Again, I dunno if that's the same thing you have, but he's the only person I know how has had cysts in his sinuses, and that's how it turned out.

magistramarla
02-08-2012, 10:43 PM
Gary,
I have many of the symptoms that you talked about (not the sinus cysts, though). I still think that a lot of it is Sjogren's, but the docs don't like to admit that it is anything but dry eyes and dry mouth. I attended a Sjogren's conference, and learned that it is much, much more. I posted about that conference. It was in April, 2010, if you look in the old threads, you may be able to find some of them I posted about most of the sessions that I attended.
Hugs,
Marla

gkf109
02-09-2012, 05:54 AM
I found out that sinus cysts can be caused by chronic sinus infections, I have had chronic sinus infections ever since I was a kid, I usually get 7 to 10 of them a year, most of the time there not to bad, so I don't go to the doctor for every one I get, I know that some people with certain AI diseases get chronic sinus infections, but there is a chance it could be caused by something else, so we will see.

debbie-b
02-09-2012, 06:31 AM
yeah, me too, but 5 is like super super low. The really good news is that it is easy to correct and you will probably notice a big difference once you get that corrected. I did.

Lucky you. Mine was 7 and got back to normal after being put on a super high dosage, but didn't feel better afterwards.
My doctor was convinced, I would feel much better, after it got back to normal.
The same thing with vitamin B 12, mine was low, so he gave me a Vitamin B 12 shot, never did feel better.

Debbie

bunny28
02-09-2012, 10:09 AM
I don't know if my levels are low for vitamin D but I know it was one of the first things prescribed by the doctor when the diagnosed me with lupus.