help with vit D levels

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2010

    Char, you and I must have the same docs! 

    JO, I understand about the 6-week stints but it doesn't seem as though 1000 IU's would be enough to maintain - JMHO.  But, like you, I try and follow my docs (or at least the ones who seem to know a little about something!)

    Thanks to all for your info, follow-up, tips, everything.

  • cs7777
    cs7777 Member Posts: 570
    edited July 2010

    Jo, The increase of 7 ng/ml in just 6 wks is not unreasonable, so I hope you're not worried aobut it.  I'm glad you're continuing to take the weekly high doses though, and yes, it may well take you quite a few months of it to get it above 50.  I agree with patoo that the 1000 daily may not be enough to maintain though.  I'd suggest the doc agrees to test you again a few months after you start the 1000 daily to make sure you're maintaining, and if you're not then increase the daily dose.

    The #s Char & patoo mention (35, 31, 40) are approximately the low end of the range needed to maintain bone health and calcium homeostasis (it's often listed as somewhere in the range of 30-35 ng/ml).  A max safe value isn't known for sure, nor is the low end needed for all the other things vit D does.  Many docs just aim for this one value that is known, or a bit above...I'm guessing that where your docs are getting the #s from. 

  • cs7777
    cs7777 Member Posts: 570
    edited July 2010

    That makes sense Jo.  :) 

  • ananda8
    ananda8 Member Posts: 2,755
    edited July 2010

    I am posting the call to action statement that is on http://www.grassrootshealth.net/documentation-scientistscall.  I am the entire thing so those who do not like to follow links can read it. The bold is mine.

    ---------------------------------------------------

    Vitamin D Scientists' Call to Action Statement (deleted by me)

  • MaryNY
    MaryNY Member Posts: 1,584
    edited July 2010

    Notself: the material you copied is copyrighted. Unless you have the permission of the authors, it's not OK to copy and post the article in its entirety. Under fair use, yuu could have posted a short extract and added a link so those interested could go to the source to read the whole thing.

  • ICanDoThis
    ICanDoThis Member Posts: 1,473
    edited July 2010

    Wanted to tell you all a good story - when I was diagnosed with BC, my PCP also ran a blood test, I had a D level of 7, my calcium was elevated, and my parathyroid levels were above normal. I had had a DEXA scan after menopause, and I was told I was osteoporotic, and put on fosamax. 

    The deal was that we would treat things after BC treatment. So, I started on 2000 ius of D, plus 50000 ius monthly. After a year, I got the D all the way up to 26, but everything else was still out of kilter, so went to see an endocrinologist. She upped the 50,000 ius to 2ce monthly, and recommended a tanning bed a couple of times a week, for 10 minutes. I did that for several months. I also started exercising - added weight training 2ce a week.

     I'm 2 years out of treatment now, and I went to my endocrinologist last week, to see how things are going. My D is 44, parathyroid is normal, calcium levels are normal. She is pushing the 50,000s to 1ce weekly for a few months, because of the reports on recommended levels for BC survivors.

    We repeated the DEXA - my spines a little better, my hips a little worse, but she has decided that I am officially osteopenic, and if I go on Boniva, and continue with the vitamin/calcium/magnesium regimen I'm on, she thinks I can avoid slipping back into osteoporosis. And this regimen is also likely to help fight cancer.

    So, we can get fixed, just by doing the right things for ourselves.

    Sue

  • ananda8
    ananda8 Member Posts: 2,755
    edited July 2010

    I have sent the following email to Grassrootshealth.org.

    "I have just posted in its entirety, along with the link, "Vitamin D Scientists' Call to Action Statement" on a breast cancer forumA member was concerned that I might have violated your copyright.  If so, I apologize.  My intent was to educate my fellow members of the Breast Cancer Forum on the importance of Vitamin D.  I will take the post down until I hear from you giving permission to use the action statement."

    I am waiting for a response.

  • Nan56143
    Nan56143 Member Posts: 349
    edited July 2010

    Dear notself,

    I just googled grassroots, and I opened the exact article that you posted. You did not violate anything. If it is on Google it is free game, and if you look at the article, you can share it on Facebook, Twitter, My Space and you can email the article to anyone.

  • MaryNY
    MaryNY Member Posts: 1,584
    edited July 2010

    Nan, just because you can find the article by using Google, does not make it fair game for copying and posting elsewhere. That is one of the commonly held myths about copyrighted material. There is a copyright notice at the bottom of the page in question. Even without a copyright notice, it would still be wrong to post without permission of the owner. When we join bc.org, one of the rules we agree to is "You agree not to violate the property rights of others, and you agree not to post any content that infringes any patent, trademark, trade secret, copyright or other proprietary rights of any party."

    In the case of the website in question, I doubt they would go to the trouble of suing bc.org over someone copying and pasting one of their web pages over here. But I'm sure they would prefer that the article was just linked to, so it would drive traffic to their site. Under "fair use" one could quote a few lines from an article or one's own summary and then link to the complete item. To see how "fair use" works, I suggest you google that term. 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2010

    Mary, there are "fair use" legal exceptions to republishing copyrighted material. Notself is in compliance with that exception. See below.

    Fair Use Notice: This article or site may contain copyrighted material, the use of which has not always been specifically authorized by the copyright owner. We are making such material available in our efforts to advance understanding of health, political, human rights, economic, democratic, and social justice issues, etc. We believe this constitutes a "fair use" of any such copyrighted material as provided for in section 107 of the US Copyright Law. In accordance with Title 17 U.S.C. Section 107, this material is distributed without profit to those who have expressed an interest in receiving the included information for research and educational purposes. For more information go to: Cornell University Law School.

  • ananda8
    ananda8 Member Posts: 2,755
    edited July 2010

    I agree that I posted in compliance with Fair Use.  However out of respect for this site and because Fair Use is filled with so many gray areas, I decided to delete the post.  If I do not hear from Grass Roots Health or if they do not grant permission, then I will wonder about their motives.  They say they are a non profit only interested in spreading the word about Vitamin D.  We'll see.  I don't expect to hear from then until sometime next week.

    Granting permission does not in any way weaken their copyright protection.  It is done all the time by various writers.  I have had permission given in the past.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2010

    I know Carole, the director of the Grassrootshealth Nonprofit. I can vouch for her generosity and fair-mindedness. She has posted many videos of her Vitamin D Conference speakers on the web for free. They cost a fortune to make. She is an amazing, selfless, woman who had breast cancer herself. She will appreciate your graciousness and welcome the opportunity to spread the word.

  • ananda8
    ananda8 Member Posts: 2,755
    edited July 2010

    The videos are terrific and I think Grassrootshealth is a terrific site.  For those of you who have not taken the time to really wander around, I suggest you do.  The videos are worth the time and the PDF files contain some outstanding graphics.

  • elimar86861
    elimar86861 Member Posts: 7,416
    edited July 2010
    JO-5, I used to get a supplement that was Calcium + Magnesium.  I cannot remember the brand or the source of Calcium but if you take the combo I don't think you will find that it is as constipating.
  • ananda8
    ananda8 Member Posts: 2,755
    edited July 2010

    JO-5,

    The second time I was on D2 50,000 IU per week, my doctor told me it was OK to take calcium with D.  You may want to check with your doctor again.

  • ananda8
    ananda8 Member Posts: 2,755
    edited July 2010

    Here is a copy of the email I received from Grassrootshealth.net.  Cool

    ---------------------------------------

    Thanks for checking. You may post (or show people links) to anything on our web site. It is meant for this purpose.

    Thanks,

    Susan Siljander, 55 ng/ml
    Project Manager
    GrassrootsHealth - What's your D level?
    http://www.grassrootshealth.net/

    ------------------------------------

  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited July 2010

    Jeez we keep going around in circles on this.

    The 50K once per week is D2. It is believed to be not as effective.

    Take 5K once daily of D3.

  • Makratz
    Makratz Member Posts: 12,678
    edited July 2010

    And you can also buy 50,000 IU's of D3 OTC if you'd like.  I did, after I took the D2.

    Good Luck JO!

  • ananda8
    ananda8 Member Posts: 2,755
    edited July 2010

    Here it is.  The bold is mine:

    --------------------------------------------

    Scientists' Call to D*action

    The Vitamin D Deficiency Epidemic

    40-75% of the world's population is vitamin D deficient.

    The causal link between severe vitamin D deficiency and rickets or the bone disease of osteomalacia is overwhelming, while the link between vitamin D insuffiency and osteoporosis with associated decreased muscle strength and increased risk of falls in osteoporotic humans is well documented by evidencebased intervention studies.

    There are newly appreciated associations between vitamin D insufficiency and many other diseases, including tuberculosis, psoriasis, multiple sclerosis, inflammatory bowel disease, type-1 diabetes, high blood pressure, increased heart failure, muscle myopathy, breast and other cancers which are believed to be linked to the non-calcemic actions of the parent vitamin D and its daughter steroid hormone. However a causal link has yet to be proven by appropriate vitamin D intervention studies.

    It is projected that the incidence of many of these diseases could be reduced by 20%-50% or more, if the occurrence of vitamin D deficiency and insufficiency were eradicated by increasing vitamin D intakes. The appropriate intake of vitamin D required to effect a significant disease reduction depends on the individual's age, race, lifestyle, and latitude of residence. New evidence indicates that the intake should be in the range of 2000 IU per day for adults. Intake of 2000 IU/day is the current no adverse event level of the National Academy of Sciences, Institute of Medicine, Food and Nutrition Board.

    It is well documented that the darker the skin, the greater the probability of a vitamin D deficiency. Even in southern climates, 55% of African Americans and 22% of Caucasians are deficient.

    More than 1 billion people worldwide are affected at a tremendous cost to society.

    A Scientists' Call to Action has been issued to alert the public to the importance to have vitamin D serum levels between 40 and 60 nanograms/milliliter to prevent these diseases. Implementing this level is safe and inexpensive.

    The benefit of an adequate vitamin D level to each individual will be better overall health and a reduction in illnesses and, ultimately, a significant reduction in health care costs. The benefit of adequate vitamin D levels to society/businesses is a more productive workforce and, lower health care costs.

    The D*action project has as its purpose to serve as a model for public health action on vitamin D. It is a test bed for techniques, and for providing outcome evaluation at a community level.

    ---------------------------------

    It took 4000 IU D3 for my level to rise to 54ng/ml from a low of 22ng/ml. 

    I tried two rounds of eight weeks each using 50,000IU of D2 and my level only went to 29.  I would like to hear from anyone who has had their vitamin D level reach 40-60ng/ml while on D2.  How long did it take?

  • Sugar77
    Sugar77 Member Posts: 2,138
    edited July 2010

    notself - thanks for reposting.  This article is very informative.

  • MaryNY
    MaryNY Member Posts: 1,584
    edited July 2010

    Notice the article advocates taking 2,000IU of Vitamin D per day and this is coming from a group with links to the Vitamin D testing business and to the vitamin supplement business. Despite this, it does not advise taking the extremely high amounts that have been described elsewhere.

  • ananda8
    ananda8 Member Posts: 2,755
    edited July 2010

    MaryNY,

    It is always prudent to be a bit skeptical.  I understand that completely.  If you read other sections of the site or listened to the videos, you would find that there has been no record of any problem below a dose of 10,000 IU per day of D3.  In the videos each doctor makes a statement that they are not receiving any $ or funding in relation to Vitamin D.

    You might be interested in these links from PubMed.

    A link to cardiovascular disease - http://www.ncbi.nlm.nih.gov/pubmed/20616710

    A link to falls - http://www.ncbi.nlm.nih.gov/pubmed/20616328

    A link to connective tissue disease - http://www.ncbi.nlm.nih.gov/pubmed/20615161

    A link to all of the above and cancer - http://www.ncbi.nlm.nih.gov/pubmed/20601202

    Recommendation for higher supplementation of Vitamin D - http://www.ncbi.nlm.nih.gov/pubmed/20556359

    Recommendation for Vitamin D supplementation in infants - http://www.ncbi.nlm.nih.gov/pubmed/20593151

    Osteoporosis - http://www.ncbi.nlm.nih.gov/pubmed/20511052

    Granted much more study need to be done on Vitamin D and how it works.  After all, it is not even a vitamin but a hormone.  In the mean time, I will keep my level at 40 to 60.  The "normal" range is 30-100 ng/ml so I am just trying to stay in the middle of that range.

  • Artemis
    Artemis Member Posts: 759
    edited July 2010

    Hi, Everyone ~
    Ok, back in February, my vit D level was 8.5.  After 12 weeks of prescription Vit D (the famous 50,000 units), I started taking 5000 units of OTC Vit D3 in the middle of May. 

    I was retested 3 weeks ago, and I'm now at 28.7.  Still not great, but definitely moving in the right direction!

    I don't know if this had been discussed here, but my onc nurse told me that antacids like Pepcid can deplete vitamin D.  I've taken 2 Pepcid a day for five years plus I've avoided calcium and vitamin D for the past 30 years due to problems with kidney stones...hmmm...no wonder I was 8.5, lol! Tongue out

    So, in summary, I've had an increase of 20.2 in four months.   My onc doesn't want me to increase my daily 5000 units, but I think I might anyway.  Any thoughts anyone has about this are welcome!

    Artemis

  • MaryNY
    MaryNY Member Posts: 1,584
    edited July 2010

    One can go round and round in circles looking for the definitive info on Vitamin D, but I think until further studies are done, there are no real answers. If one googles for info, one keeps bumping into the Vitamin D Council. I view what they say with some skepticism as they have partnered with another company to sell Vitamin D test kits. I would call that a conflict of interest. You don't say which doctors (and which videos?) are not receiving any funding in relation to Vitamin D.

    Looking at the list of doctors whose names appeared below the article that notself linked to at the top of this page, I have found the following doctors do profit from their interest in Vitamin D:

    Dr Cannell of the Vitamin D Council is a paid consultant for DiaSorin Corporation, which makes vitamin D testing equipment.

    Dr Vieth is a consultant to and spokesperson for the D Drops Company, a vitamin D supplement manufacturer.

    Dr Grant receives funding from the UV Foundation, the Vitamin D Society (Canada), and the European Sunlight Association.

    Dr Hollis consults for DiaSorin Corporation, which makes vitamin D testing equipment. .

    Dr Hathcock is an employee of the Council for Responsible Nutrition, a trade association representing manufacturers of dietary supplement ingredients and products.

  • ananda8
    ananda8 Member Posts: 2,755
    edited July 2010

    Watch the video by Dr. Heaney. At the very beginning he states he has no financial gain from Vitamin D.  He explains the whole issue of deficiency very clearly.  Here is the link.  I couldn't get the Grassrootshealth link to copy.  It is a long video but worth the time to watch. 

    http://www.youtube.com/watch?v=emjCzaHtSrg

    Here is a link to information about Dr. Heaney.  http://osteoporosis.creighton.edu/bio_faculty/dr_heaney.htm

    Here is an article that just appeared in Yahoo news about about a link between low Vitamin D and Parkinson's .

    http://news.yahoo.com/s/afp/20100712/hl_afp/healthresearchusfinlandparkinsons

    Have you checked out the abstracts of studies I posted? 

  • MariannaLaFrance
    MariannaLaFrance Member Posts: 777
    edited July 2010

    This is one instance where I put my willing suspension of disbelief glasses on. I have been so helped by Vitamin D, that I don't even care that the doctors involved in the research create test kits or serve on medical advisory councils, or even make Vitamin D drops. Vitamin D has changed my life for the better..... to the point that I can't believe my health had slid into such an abysmal state of affairs before all this BC crap started.  I read everything I can on Vitamin D, and I am amazed that everything in medicine comes around full-circle. Remember, Vitamin D research started in the early part of the 20th century, only to be forgotten, courtesy of our Big Pharma companies, who couldn't take a profit on something that is not patent-able.  Sometimes, it's the time-honored tinctures that work best--- remember using iodine on your cuts? Patients who went to "spas" in the Arkansas mountains to "get some sun?"  Aspirin, for goodness sake. It's derived from tree bark, and is probably one of the more "natural" remedies out there....and it's been around for a long time.  

    Anyway, I am ranting now. I believe in the power of Vitamin D. It's changed my life for the better.

    p.s. Thanks, notself, for re-posting your information. And for being "compliant" too! So glad the website owners granted you permission to re-post!

  • MaryNY
    MaryNY Member Posts: 1,584
    edited July 2010

    Notself, I've done as much reading on Vitamin D as the next lay person. And I often feel like a dog chasing its tail as searches invariably lead back to the Vitamin D Council with its ties to the Vitamin D testing and supplement business. 

    While I do take a Vitamin D supplement, I'm not an advocate of taking extremely high doses until more is known about both the benefits and the risks of doing so. Remember that Vitamin D is a fat-soluble vitamin, so excesses are not excreted as they would be with Vit B or Vit C.

    If one were to believe all the hype about Vitamin D, one would see it as a cure for various cancers, multiple sclerosis, autism, depression, mental illness, dementia, osteoporosis, heart disease, hypertension, diabetes, autoimmune disease and chronic fatigue. I remain sceptical that its the cure-all that's being touted by a number of individuals who stand to profit by encouraging people to believe this before adequate scientific studies are done. For example, the Vitamin D Council have ties to the following:

       Stop Aging Now. They promise to donate 50% of Vitamin D sales to the Vitamin D Council.

       Bio-Tech. Donate $1 of the purchase price of each botttle of D3 to the Vitamin D Council.

       ZRT Labs. This link is so close that one can order the test without even leaving the Vitamin D Council website. "The Vitamin D Council and Dr. Cannell have partnered with ZRT Laboratory to offer selected products to you at a discount."

       Mercola. Go here for your tanning beds. Would you buy a tanning bed from Dr. Mercola? "[Vitamin D Council} recommend the use of any Mercola Tanning Systems as a safe and effective way to help you achieve natural levels of Vitamin D."

  • MariannaLaFrance
    MariannaLaFrance Member Posts: 777
    edited July 2010

    MaryNY,

     I guess I shouldn't buy sunscreen based on comments on skin cancer from my dermatolgist, either. After all, many dermatologists are on advisory councils for skin cancer, and probably have helped to develop the multi-billion dollar industry for sunscreen.  I'd bet that 80% of the American population uses skin protection UVA/UVB products based on this data. I'd apply it to chemotherapy treatments, sunscreens, and potentially any medication out there.

  • ananda8
    ananda8 Member Posts: 2,755
    edited July 2010

    MaryNY,

    You obviously have not read the links I have provided from PubMed.  PubMed is a service of the National Institute of Health (NIH).  Are you saying that the NIH is involved with the Vitamin D council? 

    Other than selling Vitamin D at the same price as a health food store and selling test kits that end up costing less than going to a doctor's office, you really haven't explained your problem with the Vitamin D Council.  I think some of the claims made by the council may be ahead of the science, but I have provided links to the science that supports supplementation of Vitamin D to the level of 40-60 ng/ml.

    Whether you choose to ignore the information on PubMed or not is up to you.  I find the information valuable as well as the information and documentation provided by Dr. Heaney in his video. 

    As for high doses, people on extremely high doses are those who are on 50,000 IU of Vitamin D2 prescribed by their doctors.  I think D2 is a waste of time but these people are being monitored by their doctors for side effects. 

    One of the abstracts I provided states that the RDA for D3 should be 2000 IU per day.  That is the recommended daily allowance for people who are not deficient.  Those of us who are taking more than 2000 IU are very deficient or do not get sufficient sun to maintain our levels without supplementation and we also are under our doctors' supervision.

  • juli0212
    juli0212 Member Posts: 1,415
    edited July 2010

    This has turned into quite the negative thread, and really I guess I'm not going to respond any longer.  As noted, some of us are following our doctor's recommendations on the D2, 50,000ius for however many weeks prescribed (me:  12 weeks, 4 more to go).  I was definitely interested in lots of info that was being presented here, but the negativity is something I swore to avoid (sure you can agree to disagree and have healthy conversations), which is why I'm sometimes on this forum and sometimes avoid it altogether.  I do what's best for ME.  I question my doctors (Lord KNOWS they know I do) and will continue to do so.  WE are our own advocates in our own health.   All my best to everyone...I know everyone means well.   ~juli

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