Vit D Levels - Frustrated!

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  • FEB
    FEB Member Posts: 552
    edited September 2008

    Candie, The one thing I have totally given up is dairy products. I have read so much about the way diary breaks down and I just do not trust it. I hope you are looking carefully for the hormone free stuff. When they feed hormones to these cows, it goes right to us ER+ women. After I read Jane Plant's book, I was convinced. I think giving up diary is a major reason,  I have been able to lose weight so easily. I will eat some imported cheese once in a while, but not daily like I use to. I use vanilla flavored rice drink on my cereal and in fruit smoothies that are really yummy. I take a 5000 IU Vit. D supplement daily that I get from my chiropractic doc. The brand is by ortho molecular, and they only sell to doctors, so you may have to ask your doc to get it for you. Or check their website to find where to get it near you.

    The more I read, the more I realize how important Vit d is to our health. It is too bad our diary products are so polluted that we cannot get it there. Even if we are in the sun, it does not seem to be enough. I am committed to taking this stuff forever.

  • stillrusty
    stillrusty Member Posts: 120
    edited September 2008

    Hi Anne

    I don't know which brand....generic I assume- but my prescription dose is 1.25mg per week. That is 1 tablet- once a week. I looked it up and it is equivalent to 50,000 IU.

    This is a temporary dose however. Too much Vit D can cause problems also.

    For everything you always wanted to know about vitamin D.....but were afraid to ask....

    I found this site  (from the NIH)  to be informative-

    http://ods.od.nih.gov/factsheets/vitamind.asp

  • jason222
    jason222 Member Posts: 70
    edited September 2008
    Hi,

    I'd like to ask, do most start your vitamin D supplement after chemo or during? Trying to decide whether to start now or wait till the chemo is finished..
  • stillrusty
    stillrusty Member Posts: 120
    edited September 2008

    Well- I'm not getting chemo- but when my gyn found out I was low- she had me start right away- even before i knew if i would need chemo or not. Of course check with your onc- some drugs don't interact well with others.

  • GayleD
    GayleD Member Posts: 36
    edited September 2008

    Hi stillrusty,

         I was on the 50,000IU dose daily for two weeks and then weekly for another four weeks.  You might want to talk with your doc about taking Vitamin D3 instead of D2.  The 1.25 mg pills are D2 and not D3.  Vitamin D3 is absorbed more quickly and processed more efficiently by the body, so long term it's better to be taking it versus the D2.  My doctor agreed when I talked with her about it and I stopped the weekly 1.25 mg. pill in favor of about about 6,000IU daily of D3 (I order mine online from Swanson...1000 IU per capsule). 

         I get my levels checked again next week.  I'm sure they are up because I've been feeling SOOOO much better.  It's been about two and a half months since my deficiency was found.  I've read it can take up to 6 months for things to normalize, especially if levels were very low.

    Gayle 

  • Dejaboo
    Dejaboo Member Posts: 2,916
    edited September 2008

    I got my Vit D test back yesterday.  When I was DX I had it checked- but it was the wrong D test.

    Wednesday I had the right one done.  Mine is 40.2 ng/ml  (normal range on my tes shows 30-80)

    Id like to get it higher then 40.

    I have been taking 1000IUs of D3 for 5 + Months.  I also get sun about 5 times a week.  Anywhere from 15-60 minutes a day.  That will be ending soon.  I plan on increasing my D3 to 1000 2 x a day OR 1000 2x a day with only 1000 every other day.

    Sound good?

    Pam

  • stillrusty
    stillrusty Member Posts: 120
    edited September 2008

    Thanks Gayle,

    That was very helpful. It bothers me that it doesn't say anywhere on my prescription about being D2 or 3. How low was your level? In what way did it make you feel better. Lately i feel like I get tired so easily. Are you taking anything else?

  • SherriM
    SherriM Member Posts: 179
    edited September 2008

    A friend, whose sister was just dx with mets (after 4 years NED), just called to ask if I was on vit D.  It seems her sister's onc just put her on 50,000 IU Vit D, and told her that she's been seeing wonderful results with her patient's tumors shrinking on Vit D. 

    I've been taking 2000 U D3 for the past couple of months, but haven't had levels drawn--most everyone posting on this thread seems to be dealing with their PCP's.  Are there any onc's getting on the bandwagon besides my friend's sisters onc?   

  • GayleD
    GayleD Member Posts: 36
    edited September 2008

    There is a lot of recent research, but it seems like a good number of people in the medical community aren't up on it yet.  When my DCIS was diagnosed, the area of suspicion of 1.2 cm. The biopsy from my lumpectomy showed the DCIS was 2mm.  I know the "suspicious area" is likely to not all be DCIS, but I really think that getting my Vitamin D levels up helped to "shrink" the area.  

  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2008

    My onc must have recently gotten on the Vit D bandwagon.  When I saw her 6 months ago she said she was surprised how many people were deficient.  She told me that if one's number was in the 30s she prescribed the 50,000 IU of D2.  At that time my D level was 42.9.  Then, my pcp did a test and it dropped to 34.  I was taking 2000 IUs, but have increased it to 3000 IUs and will have it re-tested in December.  I can't explain the drop because my sun exposure is next to nothing so that had nothing to do with it.  I saw my onc's PA yesterday so I didn't discuss it much with her.  I don't know how much she knows.  My primary doesn't know much about it only what I have said and he does order the tests for me.

    Shirley

  • SherriM
    SherriM Member Posts: 179
    edited September 2008

    I have to drop into my onc's office for post-chemo bloodwork on Monday, and his nurse practitioner is usually there hanging around (that's all they do on Monday AM is bloodwork)....anyway, I'm going to see if she can add Vit D to my bloodwork. 

  • wishiwere
    wishiwere Member Posts: 3,793
    edited September 2008

    So it is the 25-OH-D test that they need to do?  Just want to get this right the FIRST poke as I'm sure none of my docs do this routinely.  It's never even been suggested, but I'm sure my BS in october will.  He's fantastic and stay up on the latest, where I think my old onco who 'doesn't normally breast cancer' just doesn't care about the minute details :(

  • Dejaboo
    Dejaboo Member Posts: 2,916
    edited September 2008

    Hi wishiwere

    I looked up the names of both of the D tests I got (the wrong & the right one)

    Here they are from my Report.   It looks like the 25-OH-D is the right one

    25 HYDROXYVITAMIN D2 D3  Right one

    VITAMIN D,1,25-DIHYDROXY- wrong one  

    Pam

  • stillrusty
    stillrusty Member Posts: 120
    edited September 2008
    To learn about any lab test check out www.labtestsonline.org.
  • wishiwere
    wishiwere Member Posts: 3,793
    edited September 2008

    Thanks DJ and Stillrusty.  I know my pcp is a very kind and fairly well-rounded doc, but sometimes lacks the knowledge in BC and will readily admit it.  But I have to say, as my dh noticed (and he's one of those that normally just does what the doc says with no ?'s asked), that this doc ALWAYS listens intently and will do the research if he doesn't know the answer.  I've had many docs in my family and my life that would give patent answers and would later find out they were off base, or completely wrong in their thougths.  This one is so honest, I love him totally!  IF he doesn't know, he'll say that and find the answers. 

    Anyway...waiting on the test results of other type and unfortunately I was lacking in brain cells in teh question area as far as supplements, but do plan to talk with him about them this week, so I appreaciate your guidance :)

    Thanks again!

  • learning_to_fly
    learning_to_fly Member Posts: 6
    edited September 2008

    My wife was dx trip neg last yr and has gone through surgery, chemo, radiation. Her vit D levels are low and she has been trying to get a lot of sun. However, even after a few months of a lot of sun daily, her counts came in pretty low. Any thoughts on whether the sun helps and does it make any difference where in the US one is. We live in the mid atlantic region and some folks say that the angled rays of the sun are not enough to create the appropriate level of vit D. thanks!

  • roxy42
    roxy42 Member Posts: 495
    edited September 2008

    Hi my  Onc is going to put me on a prisciption of Vitimen D and check my levels every week.I take 1000 a day and get sun but its not enough so my Onc is going to put me on 50,00 IU a week and see if that helps......godbless roxy

  • GayleD
    GayleD Member Posts: 36
    edited September 2008

    My PCP said anyone living north of Atlanta, GA probably does not get enough Vit.D from the sun, and that's likely a definite "no" during the fall and winter months.

  • stillrusty
    stillrusty Member Posts: 120
    edited September 2008

    I did read somewhere that above a certain latitude, it is difficult to get enough vit D from the sun. I'm in the Northeast.   I'm also taking 50,000 IU once per week. I don't know how accurate this is- but just now, I was in the waiting room at my Doc's office, and read a statement about Vit D  (in a magazine about bc), that said women undergoing treatment for breast cancer who have low vit D don't respond as well to treatment compared to women with adequate levels of D.

  • wishiwere
    wishiwere Member Posts: 3,793
    edited September 2008

    Thanks Rusty.  Do you remember what mag it was? I was getting one after my treatments, but seems I'm off their list or something, as I don't remember getting this last few months ;(  Oh well...less to remind us I suppose.  But some of the articles are very informative.

  • stillrusty
    stillrusty Member Posts: 120
    edited September 2008

    OK, I looked it up...there was an article about Olivia Newton John, and how she used acupuncture to treat her nausea from bc meds- so I googled Olivia Newton john and found the magazine ...  oh , the Internet is great!

    www.womenandcancermag.com

    and here is the article that caught my eye-

    http://www.olivianewton-john.com/wacfall08olivia.pdf

  • stillrusty
    stillrusty Member Posts: 120
    edited September 2008
  • wishiwere
    wishiwere Member Posts: 3,793
    edited September 2008

    Thanks, I'll read them!  Always interested in reading more!  UGH! Seems as though this part if never ending.  We should have earned degrees after going through this mess, you realize that?

     Thanks again! :D

  • GayleD
    GayleD Member Posts: 36
    edited September 2008

    There are a few other forums here that have discussed the Vitamin D deficiency/cancer link that you might want to check out.  If you type in "Vitamin D deficiency" into the search engine for this site you'll find them.  Lots of good discussion on those too!

  • nixieschaos
    nixieschaos Member Posts: 130
    edited September 2008

    There is a great book called "Don't Drink your Milk' by Frank Oski, M.D. Frank A. Oski, MD, is the former physician-in-chief of John Hopkins Children's Center and Professor and Chairman of the Department of Pediatrics at John Hopkins University School of Medicine. I DON'T drink milk...Don't eat cheese...no dairy!!! Like LindaMemm, I think my consumption of dairy caused my BC, among other bad lifestyle choices i was making. Based on this book, the energy necessary for our bodies to digest animal sources of calcium actually depletes the critical nutrients in our bodies...So, if we are properly fueling our bodies with the necessary foods (That have been on this earth from the beginning of time, to sustain us), we shouldn't have issues with our vitamin D levels, or anything else...? Not only are cases of skin cancer increasing, but cancer in general, osteoporosis, heart disease, etc..  

  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited October 2008

    bump to you Katie2

  • juliebb
    juliebb Member Posts: 140
    edited October 2008

    What about Dr. Mercola's lamps that work like the sun? You have a choice to buy the one that makes you tan or the one that doesn't. Both make you produce vitamin D. I don't know what to believe anymore.

  • OLBinNJ
    OLBinNJ Member Posts: 236
    edited December 2008

         I have been taking 1200-2200 IUs of D3 for years as well as spending a lot of time outdoors in the warm weather.  I just got my test results and my vitamin D3 level is 15!!!!!  I am upping my intake, but how long should I wait to be retested?  I can't believe my level is so low!!!!

  • Jisman
    Jisman Member Posts: 149
    edited December 2008

    OLB - When I was tested at a 10, my doctor put me on megadoses (50,000 IU once per week) of Vitamin D for 6 weeks.  I followed that with 1400 IUs per day.  They wanted me to wait 3 months before restesting to be sure the result wasn't residual from the megadoses.  Just had the blood drawn yesterday so expect results in a few days.  With most recos now being in the 40-50 range, and given that you have been taking 1200-2200 IUs for 3 years, consider talking with your doctor about megadosing .  It was a relatively small gel capsule - not difficult to swallow.

  • OLBinNJ
    OLBinNJ Member Posts: 236
    edited December 2008

         You're right, I need to talk to my doctor.  I just received the test results in the mail, and freaked!  I haven't had a chance to talk to my doctor, but will ask about megadosing.

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