help with vit D levels

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

    RoseG, I do think the jury is still out but it seems to really be leaning toward we need more, much more, and the Oncs are just not yet willing to get on board.  I was also told that my levels were "normal" by both my med Onc and PCP - my level was at 32 ng/mL.  I took it upon myself to supplement, now up to 3500-5000 ius/day and my recent test came in at 43.  Onc again just left message that I tested normal.  Didn't even bother to check why it went up 10 points!  

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  • crazy4carrots
    crazy4carrots Member Posts: 5,324
    edited October 2010
    Rose -- After about a year of taking about 1500 IUs/day, I was tested in July.  The result was 73 nm/l (or 28 ng/ml).  So I started taking 5000 IUs and was retested last week.  Just waiting to hear the results and hoping for improvement.  My doc says 125-150 nm/l is the preferred level, according to all he has read about the value of VitD3.
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2010

    Hmmmm, lindasa, wonder if your doc would condense it and send it to our docs!!!!

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  • Char2010
    Char2010 Member Posts: 532
    edited October 2010

    My Vit D level is 31.  Onco told me this is "perfect", no need to get it higher, you can overdose.  Nuitritionist and endicronologist said it should be over 40, closer to 60.  So I am taking 4000 IUs.  It would be nice if there was more consistency :-(

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

    Char, I had read somewhere that you would overdose if your level was over something like 105 ng/mL!  Wonder how long it would take to get it up to that at 5000 IU's/day?  that is simply irresponsible for an Onco to say that.  Lay people maybe, but not an Onc.  Sorry, JMHO.

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  • Char2010
    Char2010 Member Posts: 532
    edited October 2010

    patoo - thanks, I agree.

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  • SoCalLisa
    SoCalLisa Member Posts: 13,961
    edited October 2010

    I heard 40-60

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

    Hi Unklez, just to reiterate, the 50,000 IUs Im talking about is D3 not D2.

    Is anyone else able to get this large amount, or is it only offered to us in NZ? If it is, I'm certainly curious as to why. 

    Heres an excerpt from  Julianne's Paleo & Zone Nutrition Blog

    QUOTE

    My Doctor prescribes a Vitamin D tablet for me - how do I know it is enough?

    A New Zealand doctor may prescribe Cholecalciferol tabs - these are Vitamin D3 tabs, the dose is 1.25mg per tab, this is equivalent to 50,000iu (international units). This is a high strength tablet compared to the ones you buy from a health shop, which are usually 1000iu tabs. The normal dose prescribed is one per day for 6 days, then 1 per week for 6 weeks. Some doctors will prescribe 1 tab per month.

    If you are on a maintenance dose of one tab a month - it may or may not be enough. 50,000iu per month is an average of 1670iu per day. The only way to know if it is sufficient is to ask your doctor to get a vitamin D test. Depending on the results adjust the dose - you may need 2, 3 or even 4 tabs per month to reach ideal Vitamin D levels.

    UNQUOTE

    Musical
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  • Resting
    Resting Member Posts: 215
    edited October 2010

    Does anyone know if it makes a difference what brand of Vit D3 you take. I went to the Vitamin Store and bought their brand as I was picking up something else. I've also taken a general otc vit. D3 from Walmart. Wondering if it makes a difference where or what you get otc.

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  • NativeMainer
    NativeMainer Member Posts: 10,462
    edited October 2010

    ECT--it can make a difference which brand you buy.  Some brands test for quality and consistence of dose of the active ingredient, some don't.  Look for the USP  or NF (US Phamacopia or National Formulary) symbol--these have been standardized for dosage and follow the same manufacturing guidelines as drug companies.  You can also look for the Consumer Lab quality seal or check the rating at http://www.consumerlab.com/   A GMP seal indicates the company follows "Good Manufacturing Processes" which is the same as used by pharmaceutical companies.  BioFit is a good mark to look for, since this means it has been through a biological assay process and does what it says it does. 

    A nice summary of how to check supplement quality is at http://www.supplementquality.com/z_askexpert/judging_quality.html

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  • Everlastpink
    Everlastpink Member Posts: 139
    edited October 2010

    I would like to see some studies too.  My primary care doc said that my initial level of 38 was borderline low normal.  He likes the levels to be in the 60's and would prefer it to be 70.

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  • AStorm
    AStorm Member Posts: 1,429
    edited October 2010

    Thanks, NM! I'm going to check all my supplements right now!

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

    Thanks Nativemainer for those links, which I aim to check out.. I wonder if they would be relative to me as a NZer????     Undecided   Ive also been trying to avoid like the plague, anything with soy in it. Apparently theres soy in just about everything including meds and supplements. 

     Hey Jo, Im a bit like you and only want the most basic of language, or really clear explanations. Unfortunately, as is evident all through this thread, it aint that simple.  I too wish there was an agreed consensus on things like what constitutes the "right dose". However heres some info I just gathered in snippetts in my travels that might help to understand about tests. Ive spent quite a bit of time at the vitamendcouncil website, so its probably from there........

    Calcidiol
    25(OH)D (25-hydroxyvitamin D). A prehormone in your blood that is produced in the liver from the metabolism of vitamin D3 cholecalciferol. When testing for vitamin D deficiency, this is the only form that should be tested for.

    Calcitriol
    1,25(OH)2D3 (1,25-dihydroxyvitamin D). Referred to as activated vitamin D, calcitriol is the most potent steroid hormone in the human body and has powerful anti-cancer properties. Calcitriol is made from calcidiol in the kidneys and other tissues and is also produced synthetically as an analogue. Calcitriol levels should never be used to determine if you are deficient in vitamin D.

    Cholecalciferol
    Vitamin D3. Cholecalciferol is the naturally occurring form of vitamin D. It is a prehormone that is synthesized naturally in the skin by ultraviolet B irradiation of 7-dehydrocholesterol. Cholecalciferol is real vitamin D. All other compounds are either metabolic products or chemical modifications.


    Vitamin D
    A prohormone that behaves similar to a steroid in that it binds to a receptor and has a regulatory effect on gene expression. Vitamin D plays an important role in: the maintenance of several organ systems, bone formation and mineralization, and the control of calcium and phosphorus metabolism. Vitamin D also performs immunosuppressive and anti-tumor functions and is vital for the maintenance of the blood/brain barrier. The term vitamin D also refers to vitamin D metabolites and synthetically-derived vitamin D analogues.
    Different forms of vitamin D:
    Vitamin D1: molecular compound of ergocalciferol and lumisterol (1:1 ratio).
    Vitamin D2: ergocalciferol or calciferol (made from ergosterol).
    Vitamin D3: cholecalciferol (made from 7-dehydrocholesterol). Vitamin D3 is real vitamin D. All other compounds are either metabolic products or chemical modifications.
    Vitamin D4: dihydrotachysterol 22,23-dihydroergocalciferol.
    Vitamin D5: sitocalciferol (made from 7-dehydrositosterol).

    Musical

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  • sam52
    sam52 Member Posts: 950
    edited October 2010

    I am pretty sure this has been documented before, but I can't seem to find it, so apologies.....

    Could someone please tell me what the optimal level for vitamin D should be in mg/l and n/mol please?

    I know there is a big difference between the two and I am now confused....

    Thankyou,

    Sam 

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  • crazy4carrots
    crazy4carrots Member Posts: 5,324
    edited August 2013

    Sam -- For some reason (??) the UK and the Commonwealth countries seem to use the nanomoles per litre meaurement - nm/l - , the optimum being between 125 and 150.  The U.S. (and perhaps other countries) use nanograms per millilitre - ng/ml - with the optimum being between 50 and 100.

    Yes, it's confusing! What the heck are nanomoles?

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

     Another excerpt from  " Vitamin D - ideal levels, and how much we should take _ Julianne's Paleo & Zone Nutrition Blog.htm "

    Here is a summary of ideal Vitamin D levels in both ng/ml and nmol/L

    The following 25(OH)D blood serum levels are now generally accepted - NZ measurements are highlighted:

    Blood levels below 20 ng/ml or 50 nMol/L constitute a serious deficiency
    Blood levels above 32 ng/ml or 80 nMol/L is the lowest acceptable level. Below this is now considered deficient.

    Blood levels of 40 ng/ml or 100 nMol/L are now considered the lowest optimum level
    Blood levels of 60 ng/ml or 150 nMol/L are now considered an optimum level
    Blood levels of 80 ng/ml or 200 nMol/L are now considered a safe upper limit

    When you get a blood test, request the results from your Doctor. Check your result against the ideal levels above. Doctors will merely look to see if your blood levels are above 50nmol/L and below 150nmol/L. Most Doctors do not realise that there are many health issues associated with having blood levels below 100nmol/L

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

    Dear Musical,

    Good to know that you get 50K D3 in New Zealand. I have not found this dosage of D3 in the USA. Hopefully we will catch up soon.

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

    I take 50,000 iu's of vd3 and I am in the US.  I went to walgreens pharmacy and ordered it. I paid about $12.00 for 100 capsules.  CHEAP!!   You can get it in the USA, you just have to ask!

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  • whippetmom
    whippetmom Member Posts: 6,920
    edited October 2010

    Makraz: How often do you take the 50K iu's?  [And thanks for the Walgreen's tip!]

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  • Luna5
    Luna5 Member Posts: 738
    edited October 2010

    Musical...order your D3 on line ...I take 15,000 to 20,000 IU per day...you can easily order D3 in 5,000 IU pills.

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  • Luna5
    Luna5 Member Posts: 738
    edited August 2013

    Whippetmom....I am having the same problem.  In the last month my skin is saggy and big bags under my eyes.  Pictures of me from a month ago did not have that.  I don't know what I am doing differently to cause this.

    Maybe someone on here can help us!!!?????

    About a month ago I also started supplementing estriol and testosterone in addition to my progesterone.  My estradiol is 15 and my estrone is 47.  My progesterone is finally at a level of 3.5 to 4.5 which my doc feels is very protective and counteracts the estrone of 47.

    Deborah...could it be that we have cut our estrogen that much?  Or is it some other supplement?  I have been drinking coffee everyday where I wasn't before...could that do it?

    I am also at a loss over this overnight change.

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  • Luna5
    Luna5 Member Posts: 738
    edited October 2010

    http://www.webmd.com/skin-problems-and-treatments/features/skin-nutrition

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  • whippetmom
    whippetmom Member Posts: 6,920
    edited October 2010

    I don't know Luna, but I DON'T LIKE IT ONE BIT!!! I have been online researching ad nauseum about these skin issues. I am taking Trader Joe's vitamins for skin and hair, but the link you provided above lists some vitamins not contained in my TJ's version.  I'm going out tomorrow and I am buying vitamins A-Z if it addresses the skin. I am looking forward to Halloween, because I have an excuse to wear a mask!

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  • Issymom
    Issymom Member Posts: 264
    edited October 2010

    Hi all,i

    In March of 2009 (prior to BC dx), my Vitamin D level was 5 (first time we every checked).  I took 1000mg a day.  In August of 2009, it went up to 25.  That was after a summer in the sun.  I live in the NW but I don't burn easily and spent a fair amount in the sun.  I upped my Vit D to 5,000mg per day.   In Nov 2009, I was dx with Stage II TNBC.  In March of 2010, I tested again for Vitamin D.  I was a 28.  My onc had me take 50,000/ week.  Again, I spent time in the sun this summer.  I trained for the 3-Day walk and did not slather myself with sunscreen.  I just got my Vitamin D levels today - 31!!  How could it only increase 3 points from the dead of winter to the end of summer and taking 50,000/week.  It is like my body just does not make/process/like Vitamin D.  Anyone else have this problem?  My onc forgot that I was already taking 50K so the nurse has to talk to her to see whether she wants me to go to 50,000 twice a week.  A few months ago I spoke to my Naturopathic doctor about my VIt D level.  She said that there is a test they can run to determine how my body best processes Vit D and whether I should have large doses, liquid, chewables, etc...  Of course this test is expensive and most likely NOT covered by insurance.  Anyone do a test like this?

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  • Luna5
    Luna5 Member Posts: 738
    edited October 2010

    Deborah, please report back if you find something that works.  I had quit some of my face creams because of ingredients listed on cosmeticdatabase.com that I didn't like....but I may have to use them anyway and see if it makes a difference.  Now that I think about it...I haven't been using as much coconut oil on my face as I was so maybe I should try that before I go back to the others.

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  • Luna5
    Luna5 Member Posts: 738
    edited October 2010

    Deborah...just remembered...I was drinking a LOT of organic pomgranate and or tart cherry juice and I was drinking a lot more green tea than I have been this last month.  I will try that again and see what happens....I was just trying to cut back on the fruit juice but oh well.

    also found this link  http://www.active.com/nutrition/Articles/The_Diet_Detective__The_Best_Foods_to_Nourish_Your_Skin.htm

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

    Issymom:  Were the 50,000ius Vitamin D3 or D2?  THAT makes a world of difference.  I was on the high-dose 50,000ius D2 (that is the prescription/little green gel pills) for 12 weeks, my vitamin d3 level DROPPED drastically, D2 was up, so total level of D was up, endocrinologist pooh-poohed the D3, saying THAT level WAS NOT IMPORTANT (yes, he's since been 'fired').  I now self-dose with 5,000ius of D3 daily, and will retest with my primary doc end of this month.  He agrees D3 levels should be much higher, especially with bc/parathyroid issues (for me anyway).  It's funny how this goes round and round, with D2 and D3, and I learned SO MUCH from everyone here, I truly thank everyone who reiterates the D3 issue.   :)    ~juli

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

    Whippetmom, I take it about once a week, which is about 7,000 iu's a day.  Sometimes I go 10 days between doses so that's 5,000 iu's.

    issymom, my levels were similiar to you, only I started at 18 not 3!!  WOW!!  I live in the NE and LOVE the sun, but my levels would not climb over 35.  That's why I started taking the 50,000 D3.  I can't wait to be tested again to see what my levels are.

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  • hlth4513
    hlth4513 Member Posts: 267
    edited October 2010

    Issymom-

    I had that test done as part of the Estrogenomic profile and that is when I found out that I have an issue with Vit D receptors. It is possible that you also have an issue with all fat soluble vitamins(I have that , too).

    My advice would be to save your money and skip the test. We are all unique and some of us just need to take a lot more Vitamin D than others to get our levels up.  I had to keep upping my Vit D3 to now I take 10,000IU's a day - and I live in Florida and get sunshine everyday.. It also helps to take VitK and Magnesium.

    Beth

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  • Resting
    Resting Member Posts: 215
    edited October 2010

    NativeMariner

     - thx for the info on the Brand of Vit D3. Will be reading the sites as well.

    As I read all the other posts - I'm a bit overwhelmed - how to navigate all the information, whew. Anyway, guess I need to take it one step at a time, same way I educated myself on Chemo and Radiation. Will start Tamoxifen next week - so I've been doing that research for the past few weeks.

    Thx for sharing everyone!  Carolyn

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