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Ok, I know much has been posted lately about Vitamin D but I want to get the message out to all women....and men too on the board about the importance of having your doctors check your vitamin D level if you have not yet done this. This is so important and Rheumatoid arthritis is the one autoimmune disease that can spring from this deficiency. I ran our hospitalist down at work yesterday and asked him about it as it is very difficult for me to grasp what the test means. My level is 19 and that was after a month of 1000 iu a day of D3. He told me that 19 is extremely low and needs to be dealt with. He said for optimal health, I should get it above 30 which will take some time. He also told me that over 50 percent of women are testing into the critical values which is alarming. He said that even in the sunny climates, women are still very deficient. He explained that the conversion of Vit D is very complex and much of it is due to our diet and fat absorption among many other factors. He stressed the importance of getting the level checked on a regular basis while taking the supplement as toxic levels can be reached if this vitamin is not taken correctly and toxic problems can be very difficult to overcome. I believe they also keep an eye on calcium levels while taking this vitamin.

So, please get yourself checked and treated. It makes me wonder how many of our symptoms will improve once we are in the normal range. lorster2008-05-22 06:51:53When I got my first blood test at Wake Forest, they did a Vit. E and B-12 test, but not Vit. D.  and my RD has never done one.  Guess it's time to start nagging.  Thanks for the heads-up. It's amazing how much doctors can intimidate us, even ones we like.  I plan to do this...to ask...and I'm already thinking "what will he say."  But I should just be able to say, please check this, right?  Thanks for the encouragement!My regular doctor has begun testing everyone who comes to clinic for this deficiency.  When I had my annual physical earlier this year he tested mine, and it came back with a result of <7.  I was diagnosed as being "profoundly deficient".  I've been on 50,000 IU a week for the last 8 weeks and then I go back and get re-tested.  I'm sure I've probably always been D deficient, and since there are no other precursors in my life or history that would lead to the onset of RA, we have pretty much determined that this was what caused mine. 

 
I think people should be tested for this regularly...maybe we can limit the numbers of new onsets if we can identify and treat deficiencies early!
I'm curious where everyone lives, I questioned my doc about vit D, but he felt cuz I live in sunny California I get adequate vit D.  Are there those out there who live in sunny environments that still are deficient in vit D?
Yes, actually as we age it becomes more difficult for the body to metabolize vitamin D from the sun and after the age of 70 the skin does not convert vitamin D effectively.
Also, obesity impairs vitamin D absorption....


And here's a little FYI about the symptoms of vitamni D deficiency:

Vitamin D deficiency may be characterized by muscle pain, weak bones/fractures, low energy and fatigue, lowered immunity, depression and mood swings, and sleep irregularities. Women with renal problems or intestinal concerns (such as IBS or Crohn’s disease) may be vitamin D deficient because they can neither absorb nor adequately convert the nutrient.


Lynn492008-05-22 08:25:07Thanks Lynn.  I'm not 70 or obese (yet, but I inch up in weight ever year) lorster, thanks for this reminder.  I've never been tested and although I've seen threads on the forum, I haven't been up to mentally digesting what they mean.  I am obese and also rarely go into the sun (due to med-induced photosensitivity), so I'll be sure to get it checked.

Littleistgypsy:  When I first visited my RA Doc. he said they automatically check every RA patient for Vit. D defficiancy because it's common in RA patients, so your doc shouldn't brush you off. I know what you mean about asking too many questions ...sometimes i feel like i complain to him about everything. But what i've noticed lately is, there are LOTS of different things that happen in RA to people that you wouldnt normally think would have anything to do with the RA. If you don't ask, you'll never know right? You're doctor shouldnt make you feel bad, or stupid for asking questions. If so, it might be time to look for another doctor. I switched mine because I wasnt feeling good with the one I have. You should always leave your doctor's office feeling full of hope and like he/she is always there to help you.

I dont think I've been on my Vitamin D supplements long enough to know if it's been helping. I know when i first had RA i was in horrible pain, could hardly walk, everything hurt. After being on Plaquenil and Celebrex I'm 80% better, so not sure if it's from those meds or the Vit.D?? I dont think the Vitamin D would cause the RA. Sounds like no one is sure how exactly you get RA, just theories.

Littleistgypsy. I don't think the deficiency causes RA, but what I think they are determining is that deficiency of this vitamin is making it easier to get a disease including autoimmune problems. It is best to keep your level normal which I guess is above 30. I also read where women who had breast cancer did not fare as well if they were also D deficient as the women that had good levels. It is certainly something to think about. It makes me wonder if this deficiency made it easier for me to get this disease or if the RA caused the deficiency. I don't know.

Also, I agree with klynn. you should be able to talk to your RD about all of your concerns and you should insist this test be done. If your RD refuses, go to your primary. If your primary refuses, do some doctor shopping. You have to advocate for yourself because your doctor may not. You are paying for that test so you have the right to know. I believe this is necessary. My RD put me on high Vit. D because my labs were low. He also prescribed Magnesium and high Calcium and fish oil.  They all work together for good bone health.  You can be deficient in Mag, calcium if D is low.  I have bone loss, 12% in one year according to bone density studies.  One year on D, Mag, Fish oil, and calcium raised my bone density this year by 2%.  I'm a believer in the therapy.  LindyThere are 4 D tests - we need all 4.  One shows the ratio of how we convert D.  If we convert incorrectly than what happens is we are 'Vitamin D hypersensitive' and too much D, no matter how low we are, can be TOXIC.
 
Pip
Just for the record, the toxic figure for vitamin D is closer to 20,000 units of vitamin D a day, and that dose has to be ingested over many months or even years to cause problems. Am J Clin Nutr. 1999 May;69(5):842-56

Not if you're Vitamin D hypersensitive.  And from the research I've seen - that sounds like most AI disease people. 
 
People - What's the problem with asking for all 4 tests when you ask your doc?  All you are doing is protecting yourself.  If everything is normal - supplement to your hearts content.
 
hugs,
 
Pip
Could you post your research. I would be interested in reading it. Not the Trevor Marshall stuff, I've already been over that.Could you not post stuff paid for by the Vitamin D counsil or the Tanning Lobby?
 
Yes, I am in the process of pulling all my D research together.  I will happily post it.  I'm thinking Marshall may be right and intend to make a decision soon regarding that.
 
Hugs,
 
Pip
I posted this today, I thought it was pretty interesting.

http://www.canada.com/vancouversun/news/story.html?id=2afe61fa-d92f-426d-a401-5611c495e418&p=1Just thought I'd chime in to the masses that I was very very low in Vit D.. level was 4.. I'm a 50 y/old and should be close to 50 in my level to prevent bone loss.. as yet I am okay so my deficiency must have been short term.. was it long enough to contribute to a disease that I had as a child and bring it back??  IDK.. but it makes alot of sense to me.I was low too.  

Dream -

Its a symptom of our disease.  D we intake is not getting to the cells. 
 
Lynn -
 
I found this one easily -
 
Lappe is bought and sold.  So are most of the others pushing D for profit.  All I'm saying is get the 4 tests and make a decision on what your body says - not some bozo making millions off falsified studies.
 
Pip
http://www.cbc.ca/news/viewpoint/vp_strauss/20080213.html
You know I might believe some of this if it weren't for the fact that this research goes back to the 1930's and 40's. Vitamin D has made a huge difference for me. It took away the muscle pain and weakness I had. I make sure to get at least 20 minutes of sun several times a week and so far, my D levels have stayed up. I get tested every few months and I'm happy with my results. People can read the info and make up their own minds. I can only relate my experiences.....I think the research is compelling and I intend to keep a very close eye on my Vitamin D levels.


http://www.npr.org/templates/story/story.php?storyId=5503161&ft=1&f=1007
Lynn492008-05-22 20:32:05Lynn, I have a ??? How long did it take to get your levels up to normal? And how much and often did you take?

Pip, I had three numbers on the lab report, cannot remember what they said. The bottom number was 19. What are the four tests called?Like Lynn, I can't argue with the results of taking D, Mag, fish oil, and calcium - a 2% increase in bone mass for me is great news and I'll continue on my regimen until I have proof that it will harm me.  Even then I might have to weigh the consequences.  Just like we have to do with many of our other meds.  LindyLorster,

50,000IU once a week for three months. The climbed back up very slowly. I think it was almost 6 months before they were totally back to normal. Bone density has improved too, just like with LinB....I wonder about tanning beds. Would they help those of us that are under gloomy skies most of the year?Lorster -
 
My possible complaint with D is not that there is something we may not be processing correctly but rather, for a significant portion of us, it can make us worse in the long run.  You have never been a proponant of Pred - and most research says D is a powerful STEROID hormone.  What happens when we're on steroids too long?  The same thing will happen with D especially if we are converting it incorrectly.  It's a temporary fix while the disease rages on unchecked because its a STERIOD. 
 
As for the 4 tests - I just went thru my file and its not there.  What happened was I wanted the 3 tests and asked the Intergrative Medicine doc for them, he said OK, but when I went to the lab they said 'there's a 4th test called X' so I went back to the MD and had him add that to the lab slip.  Then I walked back and they drew the blood.  Well, we moved across the country 1 week later and the report they sent in the mail has only the one test on it.  I have to call them Monday and have them resend.  Sigh. 
 
Looking on Labtestsonline I can only find mention of 3 tests. 
 
http://search.atomz.com/search/?sp-q=vitamin+d&sp-a=sp1001878c
 
So, more searching I can do.
 
Lynn - I'm not saying it's not helping, I'm saying you are taking a short term fix.  That is your decision.  I have absolutely no idea why you are so willing to listen to MD's busted for conflict of interest multiple times (one of your favorite D researchers resigned from Boston U so he could avoid being fired).  Doesn't that make you wonder?  It does me.  Yet you are so resistant to people verifying the conversion rate so as to make sure they don't get worse. 
 
I'm not like you.  I don't react well to meds and if there is some obscure side effect, I'm going to get it.  Unlike you with absolutely no bad reaction to anything ever.  I'm not against D, but I'm going to be damn sure what it's doing to my body before I put it into my body. 
 
Capishe?
 
Pip
This isn't a long term decision.  Once my levels are up and stabilized I plan on dropping D.  I may take a minimal daily dose.  I certainly don't plan on taking it long term, that wasn't even part of the of the plan when my RD and I discussed it, especially since I'm in clinical remisssion.  Someone define long term for me?   I want to see the science saying that it's harmful in the short run.  So far I haven't seen it.  I still can't argue with my 2% increase in bone density.  LindyLin, you're a special case.  How did they measure that 2% BTW?  For people like Lynn, with a text book response to meds, D is helping.  It's the rest of us that I'm concerned with. 
 
If you want info on the people saying D is harmful - they are the MP people.  They can be found on www.sarcinfo.com/  My problem with them, besides the fact that they are so technical that I can't keep up, is that they are saying the opposite of what most of these studies are saying.  Something tells me they're right, but I just don't have a deep enough understanding of it right now to make an informed decision.  So, here I sit, on the fence, neither taking or avoiding D.  And my D is low too.  I just don't want to make the wrong decision for me
 
All I know is that if you research 'vitamin D hypersensitivity' it gets mentioned a lot.  But they say it's rare.  I'm not finding any "non-D counsil links" that are 'clean' in the fact that they study was NOT paid for by people either who stand to make a bundle on D supplements or are connected to the tanning lobby.  That again makes me say...OK, something is wrong here. 
 
What I have been able to find is that people with kidney disease, fibroids of any kind, and some lung issues seem to be classified as 'hyper D sensitive".  There were some other things I'm forgetting that made me say...that's ALL of us AI people.
 
So, you can see my confusion.  Why take something if its going to make us worse.  And we won't know if we're worse until 10 years later like in the link I posted.  That's saying our Breast Cancer rates go up with massive D supps.  Think of the 'fibroid' connection - that's usually a precursor to some sort of cancer. 
 
All I'm saying is ....think what you're life would be like if you were on Pred at high doses for 10 years.  The results will be the same.
 
Hugs,
 
Pip
"one of your favorite D researchers resigned from Boston U so he could avoid being fired"

Pip,

You keep saying that even though you know it's not true!

Dr. Holick is still at Boston University and you know it.
I guess you think if you continue to repeat that lie that it will somehow become true. He resigned his position with the Department of Dermatology because he advocated people spend 15 to 20 minutes in the sun several times a week to boast their D levels....Nothing like be able to think outside the box is there and pissing people off...especially the more traditional thinking dermatologists....


Michael Holick PhD MDDirector, General Clinical Research Center
Director, Bone Health Care Clinic
Boston University Medical Center
Professor of Medicine, Physiology, and Biophysics
Boston University School of Medicine715 Albany Street M‑1013
Boston, MA 02118, USA
Phone: 617.638.4545
Fax: 617.638.8882
E‑mail: mfholick@bu.edu
Google Scholar: MF Holick
PubMed: Holick MF



Vitamin D is not a quick fix for me, in my opinion. My D levels are where they need to be now. I don't need to supplement with the mega doses and I feel well. Of course that is in part also due to the Rituxan which continues to well amazing well for me too....


I think people should read the research, take the tests and discuss their options with their physicians...


Lorster,

I had a conversation not so long ago with two of my daughters. They have done a lot of research about vitamin D for me. One is a biochemist and the other is an inorganic/physical chemist.   They both suggested that using a tanning bed might not be such a bad idea for me during the sunless winter months...I'm thinking about it.




Excuse me, I think it is true.  Let me just post this for a starter.

http://www.the-scientist.com/news/20040416/02/  Whether or not he was allowed to keep his job is irrelevant with the current concern with publishing tainted research.  He's bought and sold therefore remedial logic posits his conclusions are suspect. 
 
Here's his links to the Tanning Lobbyies.
 
http://www.cancerletter.com/indoor-tanning-industry-funded-author-of-nejm-review-on-vitamin-d
 
And this part from Cheers and Jeers
 
http://www.cspinet.org/integrity/watch/200804211.html and excerpt follows
 
Cheer to David Armstrong of the Wall Street Journal for revealing ties between the tanning industry and a Boston University researcher, Michael Holick, who recommended the moderate use of tanning beds as a way to treat or avoid vitamin-D deficiency in a New England Journal of Medicine article. Armstrong discovered that Holick received financial support from a non-profit organization, the UV Foundation that is funded by the Indoor Tanning Association and makers of indoor tanning beds, which was not disclosed in the journal.
 
And the CNN transcript if anybody is listening.
 
http://transcripts.cnn.com/TRANSCRIPTS/0404/19/ltm.01.html
 
It's a pity your well educated daughters cannot afford the time to research this for you.
 
Pip
I bottomed out on D and now am taking a 50,000 unit pill once a week. Going for bloodwork next week, but I feel so much better already after just a few weeks on it. I actually have more energy and I also take extra C all day and I feel it. Thank goodness for the WWW and now we know what to ask the doctors & can help know our bodies better.Congrats Monk -
 
Oops, my bad.  He was forced out of Dermatology at BU but is still in the med school - leading all those poor overworked med students astray with fabricated research.
 
http://www.the-scientist.com/news/20040416/02/
 
Pip
It often pays to get your facts straight before you post erroronous info....And really, it's not fabricated research...As you know, opinions often vary. Just like with AP...

Oh and by the way...my well educated daughters think the D research is solid. And since their only vested interest is for their mom to be and feel well. I think I'll go with them :)



The New Vitamin D Debate

How much vitamin D should you get? That question has been a source of controversy ever since 1997 when the Institute of Medicine’s Food and Nutrition Board introduced the Dietary Reference Intakes (DRI) for the vitamin, ranging from 200 to 600 international units (IU) per day. Even then, many leading researchers believed the DRI should be set much higher—and now, their ranks are growing substantially.

In the March issue of the prestigious American Journal of Clinical Nutrition, 15 vitamin D experts from eight countries joined together to describe the "urgent need" for higher intakes of vitamin D. "Why is the science not making a difference to public health?" they implored.

Evidence is growing that vitamin D is important for much more than just bones; the vitamin seems to have a role in preventing colorectal and other cancers, diabetes, arthritis and even multiple sclerosis (MS). Interestingly though, when it comes to establishing dietary intake recommendations for vitamin D, we’re still stuck with what my friend Robert Heaney at Creighton University calls "the outdated model of simply getting enough to prevent rickets." Heaney is frustrated that "we’re still using those recommendations even though they were made almost a decade ago, before we knew about [the vitamin’s] connections with preventing cancer, MS and diabetes."


http://health.msn.com/fitness/articlepage.aspx?cp-documentid=100166564>1=10212


Vitamin D Levels Tied to Polyarthritis Activity


There is an inverse association between serum vitamin D metabolite levels and disease activity in patients with early inflammatory polyarthritis, according to UK researchers.

In the July issue of Arthritis and Rheumatism, Dr. Sanjeev Patel of St. Helier University Hospital, Carsholton, and colleagues note that there is evidence that vitamin D and its metabolite 25-hydroxyvitamin D (25[OH]D), in particular, may have immunomodulatory effects.

To investigate whether metabolites of vitamin D might have an influence on polyarthritis, the researchers measured serum levels of 25(OH)D and 1,25- dihydroxyvitamin D (1,25[OH]2D) in 206 patients within 6 months of the onset of symptoms of the disease.

The team observed an inverse relationship between baseline levels of 25(OH)D and tender joint count, Disease Activity Score 28-joint assessment (DAS28) scores, and Health Assessment Questionnaire (HAQ) scores.

At baseline, 1,25(OH)2D levels had an inverse relationship with HAQ scores alone. At 1 year, baseline levels of both metabolites continued to have a significant inverse association with HAQ scores.

"The results of this study," Dr. Patel told Reuters Health, "show that vitamin D deficiency may increase rheumatoid arthritis activity. We need to study this further and see if giving vitamin D or more potent drugs with vitamin D activity can relieve symptoms of rheumatoid arthritis."

Arthritis Rheum 2007;56:2143-2149.



Vitamin D May Prevent Arthritis
Research Links Vitamin D Deficiency to Rheumatoid Arthritis

http://www.webmd.com/rheumatoid-arthritis/news/20040109/vitamin-d-may-prevent-arthritis



Vitamin D: Is the Need and Evidence for Supplementation Being Ignored?

Vitamin D, the so-called sunshine vitamin, is in fact not really a vitamin but a hormone which the body can make using sunlight. Historically [1], vitamin-D deficiency was associated with the childhood disease of rickets characterized by severe growth retardation and the bending or bowing of the legs. Rickets was presumably a product of the Industrial Revolution with a high level of urbanization and child labor resulting in minimal exposure to the sun. Severe vitamin-D deficiency also caused some young women to have a deformed pelvis with the resultant difficulty in birthing, which incidentally gave rise to the practice of Cesarean sections. The suggestion that rickets was due to a lack of sunlight was advanced in 1822, but it was not until 1919 that a cure attributed to exposure to radiation from a mercury arc lamp gave strong support to this hypothesis. By the 1930s and 1940s the fortification of food with synthetically made vitamin D was popular. This was long before the photochemistry of the cutaneous (in the skin) production of vitamin D and the biochemistry and action of its metabolites were understood. With the almost complete disappearance of rickets, there was little interest in the possibility of residual or sub-clinical deficiency. Only recently has a serum marker for the vitamin D status been validated, and there has been renewed interest in the possibility of vitamin D deficiency and its implications which is quite recent and is in part due to the modern understanding of the multiplicity of biochemical actions of vitamin D metabolites. Today, research on the role of vitamin D metabolites in health and illness has gone well beyond their role in calcium homeostasis and bone health. They are implicated in cancer prevention, hypertension, rheumatoid arthritis, multiple sclerosis, and early-onset diabetes (type 1).



http://www.yourhealthbase.com/D_vitamin.htmLynn492008-05-24 15:40:14
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