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Sjogrens Topics => Living With Sjogren's => Topic started by: littleme on January 17, 2011, 05:04:01 AM

Title: vitamin d and other stuff
Post by: littleme on January 17, 2011, 05:04:01 AM
Saw the rheumy Thursday.  My hubby had read an article that made me want to ask my rheumy about my Vitamin D levels.  I have read some past posts to see that there has been some discussion about this.  Rheumy said that he tested my levels last April and they were lower (28) when the range was 20-100.  However, he said the range has changed to 32-100.  So, he ordered to test again.  He wouldn't have if I hadn't brought it up (once again...I have to ask the questions to get him to think).  Just wanted to let you all know that the acceptable levels have changed.  I've read that a deficiency in vitamin d can affect AI disorders and make you a risk for cancer. 

On another note..I finally can say my meds seem to be working.  I feel really good right now. (not perfect, but good! )  I feel guilty for writing this as I know many don't, but right now...I am enjoying this time of health.  I hope it lasts for a long while.  I hope you all find this too.
Title: Re: vitamin d and other stuff
Post by: Joe S. on January 17, 2011, 09:13:46 AM
Don't feel guilty for feeling good. Feel very lucky.
Title: Re: vitamin d and other stuff
Post by: dreamBIG on January 17, 2011, 09:46:10 AM
so can a vitamin d deficiency mask an AI?  my rheumy says I do not have sjogren's, but I do have a severe vitamin d deficiency.  I'm wondering if this would stronger support my theory that I could be seronegative?
Title: Re: vitamin d and other stuff
Post by: CAT1962 on January 17, 2011, 09:58:39 AM

My vitamin D is pretty low, too. On the "normal" scale of 30-100, mine is 17. Dr gave me an RX for 50K Vit D which I HAVE, but haven't started.  :-\ (I have 1 friend, and HER friend, who started it only to break out in head to toe hives 2 days later..i KNOW it's an individual thing, but that just scared me. I can't miss ANY work.)
Title: Re: vitamin d and other stuff
Post by: littleme on January 17, 2011, 10:04:04 AM
Cat...I agree about the scariness of the dosage.  When Rheumy told me what he would prescribe if my levels were still low, I thought...couldn't I just add it to my multi vitamin at a lower level and still help. 

Dream Big: I think they go back and forth on whether it helps or not...from what the DR. said.  I just read two that said if your levels are low, your development of  an AI is greater.  Then I read if you supplement, it could cause your AI symptoms to worsen.  Both of these studies were done in recent years.  In my quick look around I saw nothing that was done in 2010. worries, you are right.  I do feel lucky.  That is why I am enjoying right now.

Sha...I should get you on are much better at finding things than I, not patient enough. :)

Title: Re: vitamin d and other stuff
Post by: tired of it on January 17, 2011, 10:11:40 AM
Exactly what depletes our Vit D levels,, and I wonder if the general population suffers from this also and doesnt know it
Title: Re: vitamin d and other stuff
Post by: Patze on January 17, 2011, 11:17:27 AM
Hi Littleme, I too am glad to hear that you're feeling better; that's half the battle with AI's!

I too have a problem with low Vitamin D levels, and with the scale that Cat1962 mentioned, my last high (28) is still too low, ugh.  Hopefully with being on 50,000 units of Vitamin D three times a week help bring up the level (I yo-yo so much that's it's become a joke with the rheumy and myself).

Hi DreamBIG, I sure wish I had an answer for you.  I am sero negative and have all these side issues going on, and I guess that's what finally tipped the scale with the rheumy.  Is your doctor willing to treat your symptoms?

Hi CAT1962, I know how scary it can be, but have you spoken to your doctor about this fear?  I can't speak of the variables of a possible reaction, and I sure know that if there can be a reaction, I'll usually get one or another.

Take care y'all -

Title: Re: vitamin d and other stuff
Post by: amk922 on January 17, 2011, 03:48:17 PM
I am also low in Vitamin D, although I can't remember what number I was at before I started taking a supplement. I think people who have to avoid the sun are more likely to have lower Vit. D levels so this may be more common among SJS patients and others who are photosensitive.
Title: Re: vitamin d and other stuff
Post by: littleme on January 17, 2011, 03:59:07 PM

I also read today that people who live farther away from the equator have more trouble with vitamin d levels.  They said in some Scandinavian country, they use to (not sure if they still do) give Vitamin D supplements to infants to prohibit Rickets.

My Rheumy did say, you can't overdose on Vit. D.  Like any meds, they can be different from one person to the next.
Title: Re: vitamin d and other stuff
Post by: dainbramage on January 17, 2011, 04:11:13 PM
I am a Florida girl and my vit d level is only 17. I am on 50,000IUs once a week for 3 months. I was on high dose a few months ago, too. I wonder if all autoimmunes have something that depletes vit d?
Title: Re: vitamin d and other stuff
Post by: ktfabian on January 17, 2011, 04:32:08 PM
I've been taking 50K every other week for at least 2 years. I've had no problems - rashes, or stomach, which is my usual problem. My rheumy tests my levels every 3 months along with some other standing blood work, and it's been pretty good (not sure about number) but they can tell that I'm taking supplements. It hasn't every rebounded so well that he's said to stop the supplements.

Littleme - like you, I'm doing pretty well, lately. I think in my case, a back surgery that took away some pretty heavy duty pain finally gave my body a break so that the other issues I have could get taken care of. Whatever the case, I shared my good news, too. I think we can all use a boost from time to time to hear that someone who's had a rough time with SJS has hit a good patch. It's nice to know that it CAN happen! (I wouldn't have believed that it could for a lot of years!)

CAT1962 - please tell your doctor you're afraid of taking the vitamin D! He may be able to assure you that hives only happen in a small percentage of people, or he may order something  else. But you have to tell him, first.

Take care,

Take care and continue feeling well.
Title: Re: vitamin d and other stuff
Post by: dreamBIG on January 18, 2011, 07:14:17 AM
CAT1962 - I understand your fear of possible side effects.  When my doctor mailed me the prescription with my blood work results, and I saw the dosage (50,000 IU/week for 12 weeks), I freaked out and instantly got a bad feeling.  Whenever I get this particular feeling, I am usually right and something bad happens.  In this case, I knew it was something I had to face and hope and pray that my bad feeling wouldn't come true.  The night after I took my first dose, my heart started having severe fluttering/fast heartbeats.  I didn't think anything about it until it happened a few more times, and I reviewed the medicine phamplet the pharmacy always gives you with any prescription.  It listed fast/irregular heartbeat as a side effect!  I went to the pharmacy to ask about this, and the pharmacist said this is not listed as a side effect (even though the phamplet said it was!).  I called the doctor, and she too said the dosage of D could not cause this (even though the phamplet listed it!).  She told me to take OTC D of 4,000 IU/day.  I've always had trouble with a fluttering heart, but it has been so EXTREMELY minor and so EXTREMELY infrequent that I have never thought much of it.  In fact, any doctor would probably have just brushed it off as stress.  So, I don't know if this was something new going on with my heart that just coincidently happened after I took the D, or if the D really caused this.  I almost want to try taking another dose of the D just to see what would happen, but the risk is too scary for me.  As I have gotten the 50,000 IU out of my system and started the 4,000 IU I have not had any more problems.

PATZE - my doctor isn't willing to treat my symptoms, other than the D mentioned above, and refer me on to an endocrinilogist for some negative thyroid antibodies that showed up in my panel.  In fact, she was completely oblivious to the fact that it is possible to be seronegative.  I'm only 27, and it was like she quickly wanted to dismiss me of any serious diseases because of my age.  My ENT referred me on to her because of recurrent infections in my paratoid gland, and she never picked up on that.  She was quick to avoid Sjogren's, and started jumping right to fibromyalgia.  I'm like, "Do you hear what I am syaing? Do you understand why I am here?"
Title: Re: vitamin d and other stuff
Post by: CAT1962 on January 18, 2011, 06:01:16 PM

Thank you! I have heart palpitations pretty frequently. I am going to start the VIT D but in the morning on Saturday. That way the hubby can WATCH me..LOL...I'm such a nut! ;D
Title: Re: vitamin d and other stuff
Post by: mink on January 18, 2011, 06:27:24 PM
Are You crazy girl!!!Don't feel guilty for feeling good deserve it so enjoy it and just send some good vibes down this way ;) I too was feeling good up until 2 mths ago when I started flaring up....
I also will be asking my rheumy to test my vitamin D levels.

Thank you guys for all the input and once again littleme , I hope you stay feeling good ;D
Title: Re: vitamin d and other stuff
Post by: Patze on January 18, 2011, 06:32:47 PM
Hi DreamBIG,

It's so tough having to deal with a doctor that is going for an easy answer, gosh, I've gone to a few of them, ugh (a few too many).  I to have fibro and if I hadn't run into this rheumy, I sure know that I would not have an answer with being sero negative other than fibro.

Can you go to another rheumy for a second opinion maybe?  By chance, are you around a medical school or a major medical facility like Mayo, Johns Hopkins (to name but a few)?  The cutting edge doctors tend to be found around these facilities.

Hang in there, okay?

Take care of yourself -

Title: Re: vitamin d and other stuff
Post by: dreamBIG on January 18, 2011, 07:23:31 PM
Cat - Glad I could help!  Good luck with your first dosage.  Don't forget to listen to the little voice inside your head saying not to take it if something isn't right.

Patze - I'm near Vanderbilt, and I've seen a few other doctors there.  It's a long story on how I saw my first Rheumy outside of Vanderbilt.  I think I might seek a second opinion there.
Title: Re: vitamin d and other stuff
Post by: Patze on January 18, 2011, 07:44:56 PM
Hi DreamBIG,

Don't forget to keep us updated, okay?  I've heard some good things about them, and I'm curious to see what they have to say too. 

Hang in there and don't let them get you down -

Title: Re: vitamin d and other stuff
Post by: balor123 on January 21, 2011, 09:31:07 PM
My Vit D was low (17) as well despite 1hr weekday walks. 4 50k IU pills later and it was in the low 20s. Another 4 and it made it to the 40s. Taking 1.5k IU daily now but back down to high 20s. It's a tough battle.

On the high IU Vit D, no side effects a big energy boost. Yummy :) It's a toxic dose but your liver can handle it for much longer and it recovers quite well afterwards.
Title: Re: vitamin d and other stuff
Post by: Patze on January 22, 2011, 05:03:36 AM
I hear you Balor, it's up and down for me all of the time too.  I go up to the high 20's and then do the slide back to the mid teens; this yo-yoing is driving me nuts. :-\ 

Title: Re: vitamin d and other stuff
Post by: dainbramage on January 22, 2011, 07:22:20 AM
So have anyone find out why SjS have low vit D levels? Mine is 17 and I am on 50,000IUs a week.
Title: Re: vitamin d and other stuff
Post by: Nancy60 on January 22, 2011, 07:57:28 AM
My understanding is that low vit D levels are found frequently in people with Rheumatic diseases but they are not sure why.  One theory with Lupus and Sjogren's is the sun sensitivity that occurs frequently with it, but that doesn't explain everyone.

Just me thinking now.... it could be the inflammatory process depleting the levels since that is one thing common to all.  I wonder if it is low in other inflammatory illnesses (not Rheumatic) like heart disease, cancer etc...