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Please Read! Check Vit. D, 25-Hydroxy Levels

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  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited May 2019
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    Thanks Bestbird for the 2018 update. I will ask my MO if I need to increase my daily Vit D3 dosage to get closer to 60 ng/ml range (currently 49). I am in the sun more these days, so maybe I am okay. Not changing any dosages until I have that discussion.

  • olma61
    olma61 Member Posts: 1,016
    edited May 2019
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    Thanks so much for the update on this, Bestbird, and for all you've done with the book and the PDF. I had your PDF since early last year and I bought your book on Amazon this week. Great stuff -- I will be talking to my onc again about increasing my Vitamin D intake and/or getting another Rx from her

  • chicagoan
    chicagoan Member Posts: 963
    edited May 2019
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    I got my results last week. I'm at 35 so I am going to supplement and spend more time in the sun so I can get closer to 60. Thanks for your great research Best Bird! I have your book now-it is really a helpful resource.

  • SPDGirl
    SPDGirl Member Posts: 98
    edited May 2019
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    May I please have information on the book that members are mentioning?

    My breast cancer was diagnosed last year. I knew nothing of Vitamin D and never before had it tested until my surgeon ordered. I was at a 9! It has been over a year and my oncologist continues to increase my daily dosage (currently at 12,000) and my levels never get past 35. I have been referred to an Endocrinologist and see them next week.

  • cure-ious
    cure-ious Member Posts: 2,733
    edited May 2019
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    Keep in mind that vitamin D levels are much easier and quicker to raise from sunlight than to get them from the capsules and also that the vitamin D generated in the skin circulates in the system twice as long as the stuff you get from food or supplements. I think 15-30 min a day of sunshine (no sunscreen) is recommended, at least we know you can't really overdose on vitD from the sun!

  • olma61
    olma61 Member Posts: 1,016
    edited May 2019
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    SPDGirl - this is the link to get Bestbird’s book and free pdf https://www.insidersguidembc.com/order


    Cureious - thanks for that info. I was religiously forcing myself to go out in the sun last year, now I have slacked off. I need to keep making the effort. I bought a SAD lamp for the house but I don’t know that it helps with Vitamin D at all

  • gailmary
    gailmary Member Posts: 426
    edited May 2019
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    Very interesting. A few yrs ago, before stage 4 dx, I saw an endocrinologist cause I thought my thyroid was low. It was. She ran about 12 different blood tests, one being vit. D. It was 17. I was surprised cause I'm in the sun alot. She said add 2000 a day. It was still low. She said go to 4000. I went to 5000 daily - 1 pill. I dont remember what the last test showed but around 30. That was 1.5 yrs ago. MO never mentioned it. Endocrinologist left. I just saw my PCP for thyroid levels and Vit D never came up. Time to check again.

    THANK YOU MUCH

    Now get a load of this. After initial testing I googled it no doubt but then I heard a dr talking (maybe a talk show or a radio show) saying its not the skin exposed to the sun its your eyeballs gotta catch the sun! How else do you get enough in say Canada in winter?

    I gotta laugh.

    GAILMARY

  • olma61
    olma61 Member Posts: 1,016
    edited May 2019
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    Yes, I am in the northern United States and winter is what kills it for me too. Just when I get on a routine of going outside...shorter days and hibernation time comes around.

  • margaritams
    margaritams Member Posts: 183
    edited June 2019
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    After seeing the recent updates on this topic, I asked my MO to run my vitamin D levels. They came back at 16. When I went back through my past medical records, I found that the last time my Vitamin D was tested was 5 years ago -- one year before I was diagnosed with stage IV IBC de novo. At that time, my level was 8. I was put on a short-term high-dosage supplement but after it ended, I wasn't re-tested nor was it ever suggested that I should take a daily supplement and I didn't know to do it myself. Now, I'm in the midst again of a high-dosage regime that was prescribed by my MO. I'll be following up on this from now on so thanks for sharing this info.

  • chicagoan
    chicagoan Member Posts: 963
    edited August 2019
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    Feeling happy-I started supplementing with 4000 iu of Vitamin D3 two months ago and trying to get at least 20 minutes of sunshine per day. My Vitamin D3 level went up from 35 to 61 in 2 months! Thanks for the advice Bestbird.

  • olma61
    olma61 Member Posts: 1,016
    edited August 2019
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    Happy to hear your good news, Chicagoan! I had my levels tested last month because of this info, and....I was below normal again (27) but not as low as last time. My doc told me to add 1000 units of OTC D3 to the 1000 I already take...but I've been taking 3000 IU anyway. I do need to get more sun, working on that.

  • heidihill
    heidihill Member Posts: 1,856
    edited August 2019
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    Thanks for the update, Bestbird!

    Excerpt:

    Women with vitamin D levels of 60 ng/mL or more demonstrated an 82% lower risk for breast cancer, compared with those with vitamin D levels lower than 20 ng/mL (RR = 0.18). After adjusting for age, BMI, smoking status and calcium supplement intake, the risk for breast cancer was 80% lower among women with vitamin D levels of 60 ng/mL or more vs. those with vitamin D levels lower than 20 ng/mL (HR = 0.2).

    There was a consistent decrease in the risk of breast cancer as vitamin D levels increased. More women with vitamin D levels of 60 ng/mL or more were breast cancer-free than those with vitamin D levels lower than 20 ng/mL (99.3% vs. 96.8%).

  • GlobalGal
    GlobalGal Member Posts: 29
    edited August 2019
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    Thank you for posting this very helpful and informative Vitamin D thread. I previously had no idea of the connection between breast cancer and Vitamin D levels.

    I went back and checked the history of my Vitamin D lab results. Note: I have taken Vitamin D on and off over the years, but in an irregular fashion. After a squamous cell skin cancer on my face in 2001, this former sun worshiper has mostly avoided the sun, which is an excellent source of Vitamin D:

    Date/Vitamin D Levels

    • 03/20/17 --08
    • 10/30/17 --25
    • 11/02/18 --16
    • 03/07/19 --30 (diagnosed with synchronous papillary thyroid cancer and de novo metastatic breast cancer; no primary breast cancer identified)
    • 04/19/19 --20
    • 07/03/19 --14 (started on prescription Vitamin D2 50,000 units once a week for 12 weeks by endocrinologist)

    In addition, because of this thread, I am trying to obtain more sun time (new goal:15 minutes midday, when there is sun), which in the summertime in the South is just plain miserable, but apparently much needed.

  • april1964
    april1964 Member Posts: 153
    edited August 2019
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    I just had mine tested and have to start taking the D pills...my number was 11.


  • margaritams
    margaritams Member Posts: 183
    edited August 2019
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    Just thought I'd update on this since I finished my 6 week course of 50k IU weekly with 1000 IU daily. I actually increased the daily myself to 2k or 3k during this course. When I had my blood work done this week prior to my infusion, I asked if there was an order to include vitamin D testing given that I'd finished the high-dose supplement. My Dr. said no, they don't generally order testing post-treatment because insurance generally won't pay for it... WTF?! It makes no sense to me to treat a deficiency but then to not test to see whether the treatment was effective. They did end up testing and though it improved, it is still not up to the recommended 60 that the study shared here suggests. It was 44. Better but I'm still daily supplementing - Dr. said 1k daily, I'm upping it to 2k and making sure I get a bit more sun while it shines this summer.
  • scrafgal
    scrafgal Member Posts: 412
    edited August 2019
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    My MO checks it regularly and there is no extra insurance charge...

  • olma61
    olma61 Member Posts: 1,016
    edited July 2021
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    I'm responding to this rather old thread because I had my Vitamin D levels checked this week after not having them checked in awhile - my results are 68 ng/m which I'm really glad to see.

    I'm currently taking plant based D3 plus K2 (5000IU D3 + 100 mcg K2) by Sports Research in addition t the 1000 units D3 I get with my calcium supplement.

    Always a good idea to check Vit D levels periodically.

  • gailmary
    gailmary Member Posts: 426
    edited July 2021
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    Just rereading this thread tells me I need to share this with my sisters. They are petrified of this. Yet weren't too concerned about their levels even when I mentioned how important it is.

    Thanks again, Bestbird.

    Gailmaryc

  • Esther01
    Esther01 Member Posts: 229
    edited July 2021
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    Love this thread! Vitamin D is so important.

    My D level was 45 at diagnosis, which I was pleased with until my integrative doctor said No, you're barely treading water at 45. You'll need twice that for beating the cancer. After a few months, she now has me at 90. She retests every six weeks to make sure I'm in a safe range and not too high. So, I'm happy to see this study.

    It's very important to take K2 with Vitamin D, not Vitamin D alone, as Olma mentioned. Olma, yours from Sports Research sounds really good. I'm only taking 10,000 IU with 90mg K2 daily. I use a tiny sublingual (melt under the tongue) or the liquid droppers with D and K2 because they're easy to measure out. I already get 1,000 IU from my daily multivitamin, so I use one less drop.

    Another bonus of Vitamin D is its wonderful protection from C0vid... topic for another thread :)

  • divinemrsm
    divinemrsm Member Posts: 6,003
    edited July 2021
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    Thanks for the heads up on this! My Vit D level was very low when diagnosed years ago and the nurse practitioner at my pcp's office gave me a prescription for it which raised it and then I took an over the counter supplement to keep it up. Have been doing taking it for years now but I just happened to have the Vitamin D test again from the pcp's office and I see it's pretty low! I have an appt next month with him/her (pcp/np) and will ask about it.

    Olma and/or Ester, I do not see on the label of the vitamin bottle that there is any K2 in it. Can you provide a link to the supplement you take? I currently get mine from Amazon.

  • olma61
    olma61 Member Posts: 1,016
    edited July 2021
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    hi divine- here's the link. They're softgels made from coconut oil so easy to swallow



    www.amazon.com/gp/aw/d/B07255MPRN?psc=1&ref=ppx_po...

  • dutchiegirl
    dutchiegirl Member Posts: 76
    edited July 2021
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    I'm so glad for this thread! I have to get bloodwork done for an appt I have with an OB/GYN. I asked my doctor to tack on a vitamin D test today, which he did. Our healthcare does not cover vitamin D tests in Canada but, thankfully, it's only $35. I did think I was doing well at 4000 IU per day but after reading some of the posts, I may not be doing so well! I've heard that 10,000 IU is the upper limit but I worry that it may be too much. If it's low, I will get the gummies mentioned above and see if we can get some upward movement.

  • divinemrsm
    divinemrsm Member Posts: 6,003
    edited July 2021
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    Olma, thanks for the link! I have ordered a bottle.

    Ester, interesting comments by your doctor. My Vit D level is currently 34.95 ng/ml with a reference range of 30/100 ng/ml. So it's within range but on the very low end. I've been taking 5,000 IUs of D daily for years. However, the supplement I'm presently taking doesn't have the K2 and from what I've read, that helps absorption of D. The other thing is I've been getting much more sun since summer, going to the pool and doing yardwork, but that hasn't appeared to give me any boost in D. Do you know of any written reports which advise that mbc patients to raise their Vit D levels as your doctor suggests? I have an appt with my onc (it will be a new one as the former one is retiring) and I plan to ask what her approach is to the Vit D issue.

    It does get a bit complicated. I also take a calcium supplement formula, I checked the bottle and it includes K2 but only 15mg. The Vit D that Olma recommends contains 90mg of K2. So it sounds like I’m not getting enough K2. Reading further on the subject, it says K2 may prevent calcium build up in soft tissues like kidneys and possibly prevent heart disease. So I can see the benefits in taking a Vit D supplement with adequate amounts of K.

    Btw, I did get Covid in January.