Vit D help needed!

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I've been taking 50,000 IUs since last November - started at 18, went up to 28 - and now down to 25.  It's the synthetic ergocalciferol.  I questioned the pharmacist when I first got the prescription - as to why it wasn't cholecalciferol and was told it was just as good.  I don't necessarily agree, but decided to just try it.  It's been about 6 month now - shouldn't I be higher by now?  And why did it drop?!  I take it with fat too.  I need to call my dr back tomorrow and I'm trying to get my facts together - first I'd like to ask for the cholecalciferol.  But even with the other - shouldn't it be higher?  What reasons could there be for this?  If you know of any good websites for this, pls do let me know!

Also, he said he's aiming for 32 - I thought it should be much higher!  Help!p

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Comments

  • elindy
    elindy Member Posts: 25
    edited May 2014

    You should be taking the over the counter D3. I take 2000 units a day. My count went from 23 to 41 in  matter of months. I want to get to 60. D3 is absorbed much better by the body.

  • muska
    muska Member Posts: 1,195
    edited May 2014

    I am taking OTC D3 too, 2000 units a day. It took me from 30 to 52 in about six months.

  • SophiaMarie
    SophiaMarie Member Posts: 352
    edited May 2014

    do they not have a prescription D3?  I did check at vitacost and the D3 is very reasonable.  Something must be done differently!

    What was the target number your dr was aiming for?  I'm wondering why mine set it so low.

  • juneping
    juneping Member Posts: 1,594
    edited May 2014

    i have been taking vit D3 since dx...it went up from 13.7 to 58 in three months. and doc said he wanted mine to get higher. can't remember how high but i think i read somewhere around 70+. oh and vit D should be taken with or after a meal.

    i've read sometimes liver problem can affect vit D3 absorption. but it's better to check with you doc.

  • muska
    muska Member Posts: 1,195
    edited May 2014

    my doc said she would like vit D to be in the 50-60 range. But as juneping said it is always good to talk to your doctor because our health histories, age etc matter

  • SophiaMarie
    SophiaMarie Member Posts: 352
    edited May 2014

    yeah, I will definitely be talking to him first!  Thanks for all of your input!

  • Joysoul
    Joysoul Member Posts: 1
    edited May 2014

    Hello to Everyone. I am new here.  I am happy to have found this forum.   

    Hi Sophia. I too am taking Vitamin D.. In my particular case, I did not require Chemo and I chose not to have radiation; being a good candidate for that choice. 

    On April 25th I had a lumpectomy followed up by a hematoma removal and some more tissue removal around the original site on May 7. 

    Everything came back negative. They tell me I am "cancer free" at this time. Working with the medical oncologist recently, I will begin taking

    Anasterol a generic drug for Amidex (i may have those spellings wrong). 

    Is there anyone out there who has or is taking this drug?? If so, I would love to know what kind of reactions you have had to it - if any. 

    Thanks to all and have a HAPPY DAY :)     Bobbi  

  • cp418
    cp418 Member Posts: 7,079
    edited May 2014

    My understanding is some people do not utilize very well some of the oral Vitamin D supplements.  This brand was recommended by my Nutritionist and works for me.  I still need to take at least 6000 units daily to keep my levels up.  I protect myself from the sun as instructed by my dermatologist as I am high risk for melanoma.....

    http://www.pureformulas.com/biodmulsion-forte-1-fluid-oz-by-biotics-research.html?CAPCID=391618851&CADEVICE=c&CA_6C15C=1394474136#sthash.VFmmZomJ.dpbs

     

     

  • SophiaMarie
    SophiaMarie Member Posts: 352
    edited May 2014

    thank you cp!  I was looking at The Garden of Life brand, but this sounds better.  I found it on Amazon a bit cheaper even!  I put a msg through to the nutritionist that works with cancer patients.  I had talked with her last Fall and think she can be of help.  Unfortunately with the holiday weekend, I will probably have to wait until Tues.

  • SophiaMarie
    SophiaMarie Member Posts: 352
    edited May 2014

    hi Bobbi - glad you found this place - it's been a tremendous help to me!  Unfortunately I can't help you with the anasterol.  There are other discussion forums on here though that would probably be able to help - I think there's one for hormonal treatments....

  • corky60
    corky60 Member Posts: 726
    edited May 2014

    Joysoul, there is discussion about Arimidex in the Hormonal Therapy section. 

    There is also this information: http://www.breastcancer.org/treatment/hormonal/aromatase_inhibitors/arimidex

    Welcome to the boards.  Take time to explore and become familiar with what's available here.  We are here to help.--Corky

  • yoga_girl
    yoga_girl Member Posts: 234
    edited September 2014

    During menopause and after bone loss and blood tests illustrated I had low levels of D3, was put on 10,000 IUs per day to bring levels up quickly.  Within three months I was in mid range of normal, taking with Mag Cit for better absorbing.

    Since diagnosed with BC (six years after menopause), I've been put on M-W-F at 15,000 IUs per day and Tu-Th-Sa-Su at 10,000 IUs per day to keep levels above mid range (just to be safe) allowing for rads bone monitoring and additional potential for bone loss.

    Nature Made and Nature's Bounty BO/GO local grocery store, 10,000 IUs or on-line for same or higher dose softgels.

    One of the only areas I'm doing well in maintaining during BC.

  • inga6060
    inga6060 Member Posts: 56
    edited August 2014

    So, there is is a vit d out there that is so much superior in absorption.  Natural practitioners would have it, or you can buy online.  Its from biotics research.  Its emulsified d.  Way way better.  It put my levels over 100.  So, less is more.

  • Bren58
    Bren58 Member Posts: 1,048
    edited August 2014

    inga6060, that is the one I take too. Last fall my D level was about 79. My nutritionist was out of the Biotics brand so I tried another brand. By April my D had dropped to 31. Needless to say I switched back to the Bio-D-mulsion from Biotocs and it is back up to 83. It is the only one that I will take from now on! 

  • cp418
    cp418 Member Posts: 7,079
    edited August 2014

    Ditto - the comments about Bio-D-mulsion.  I switched to this brand about 2 years ago and now can maintain my D levels at 70 - 80 range.  I read somewhere that some individuasl do not metabolize or absorb certain Vit D supplements.  This may be the reason why this brand has worked better for some of us.

  • heartnsoul76
    heartnsoul76 Member Posts: 1,648
    edited August 2014

    inga, Bren & cp - how many IUs of Bio-D-Mulsion do you take per day?  They are available at Amazon.  I see they are drops - how do you take them?  Just drop them on your tongue, lol?  I agree about some people not metabolizing Vit D correctly.  I've been taking about 7000 IUs per day plus a prescription from my MO for 50,000 IUs per month and in 3 months I only went from 37 to 41.

  • Patti8861
    Patti8861 Member Posts: 3
    edited August 2014

    i am new here too.  I took Anastrazole for 2 months and the side effects were joint pain to already arthritic knees.  It was very painful and also seemed to affect one hip.  I was told to stop taking it for a month and the pain went away.  I am now taking exemestane with the only side  effect being hot flashes.  I do have insomnia only exacerbated by the breast cancer diagnosis.  So what was a problem with sleeping is MUCH worse since diagnosis.  I have not found any of recently prescribed meds to work for the insomnia 

    so I will have to call my doctor.

  • cp418
    cp418 Member Posts: 7,079
    edited August 2014

    When I needed to up my Vit D levels I was taking approx 8000 units per day.  I add the drops to my smoothie drink in the morning.  I still take 6000 units daily to maintain my Vit D level otherwise it drops.

     

    Patti - look up Melatonin supplement as a sleep aide.  It works well for many people and has been recommended for breast cancer patients.

  • heartnsoul76
    heartnsoul76 Member Posts: 1,648
    edited August 2014

    Thanks cp! That sounds like a good plan to me. I feel a Vit D range in the 70-80s in very important for breast cancer patients. Other people, 40-60 is fine and that's what some oncs are going by.

  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited August 2014

    Hi ladies, I'm glad I found this thread!

    I have osteoporosis, osteopenia and low Vit D levels. MO said take D3 and Calcium. I just had my Vit D levels re-checked last week to see if they have improved since starting the supplements a few months ago. Will know something next week.  The drops sound great, but not sure how to get my Calcium also. Doesn't Calcium need D3 to absorb? My MO suggests going to an Endo Dr. Anybody seeing an Endocrinologist? 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2014

    There is so much conflicting information about vitamin D, and I'm FAR from an expert. I can only tell my own story.

    When I got cancer, I did a lot of research. One of the things I noticed was that some were beginning to talk about low vitamin D levels being a concern.  I recalled how I'd been CRAVING sun the prior year, but never getting it (so much work, and single Mom).

    Fast forward 7 years and I begin to have severe migraines with AURA (temporary cognitive loss, visual disturbances, numb mouth, etc.).  One of the things that was tested was my vitamin D.  It was 35, and labs tend to give a normal range of 30-100, so it was never mentioned (I've since heard that range is useful for bone health, but neurological (and other?) health MIGHT be more like 70-100).  I got worse and worse and finally closed my business of 20 years and have been unemployed.  No one could help my migraines (multiple neurologists, chiro, pcp). 

    While at a chiro (who I think was not very "legit," though at least he did order a lot of blood tests), I found my vitamin D to have dropped to 15. Of note: my cardio CRP was over 6 (should ideally be under 1), which is a generic indication of inflammation somewhere in the body.  He started me on 10,000 IU of D3 daily.  I took the supplement he sold in his office (yeah, I know), then Nature's Bounty then Nature Made.  Four months later and I am at 70!  Vitamin D also supposedly fights inflammation, and my C Reactive Protein is now down to 1.7.  But what is most amazing is that my aura has completely disappeared.  I still have other issues, including headaches--but you cannot imagine what it is like to have that extreme problem gone. During a "spell," I could not see well, read, understand--I once didn't recognize my daughter's own name. 

    And the change came very quickly.  I was having a visual aura 1-3 times per day!  Within perhaps 2-3 weeks of starting the meds, I'd nearly stopped having them at all.  Then I had one each day for two days in a row. Then another about 2-3 weeks later. And that's it.  None for probably two months now.  I am so thrilled!  I know that vitamin D is important, and there is conflicting information if it should be D2 or D3 (our body converts D2 to D3??).  And the dosage is important--when my pcp found out I was taking D by order of the chiro, she said "make sure it's a big dose."   And it was-10,000 IU per day.  Now that I'm "normal," she recommends 1,000-2,000...but I'm still taking 5,000 a day until I use all the pills I have...then we'll see. 

    Mind you, I started Lipitor for high cholesterol right after the vitamin D3.  So there is some thought that these improvements could be due to that medication (which worked miraculously for my cholesterol too!).  But, whenever I look up either of these meds along with the word migraine or aura - the only thing I find is questions about whether they CAUSE migraines. 

    Bottom line-I think vitamin D is something many of us are low on, and all of us need dearly for so many body functions.

  • SophiaMarie
    SophiaMarie Member Posts: 352
    edited August 2014

    well my last test showed I dropped even further.  From 25 down to 21 - in spite of taking the 50,000 IUs 1x week - plus taking 4,000 IUs of a good liquid 2-3x week - and laying in the sun.  Soooo, my mo ordered a thyroid test which was normal, and now I have to go in for more labs.  One of the tests will be for cortisol.  Crazy that it dropped further with all I was doing!  He also is having me do the 50,000 2x week now.

  • Patti8861
    Patti8861 Member Posts: 3
    edited September 2014

    cpd418

    I've tried melatonin and it does not help.  Realize I should be on can't sleep topic.  ;-)

  • Bren58
    Bren58 Member Posts: 1,048
    edited September 2014

    The drops are really easy to take. Either add them to a smoothie like cp418, drop them on your tongue or the way my nutritionist suggested. I squeeze out the size drop I need on the back of my hand and then lick it off. Sounds weird I know, but that way you know what size drop you are getting ~ I usually do something about a 1/4" or so.

  • inga6060
    inga6060 Member Posts: 56
    edited September 2014

    To heartnsoul7, I was taking 10,000iu.  When I got levels checked, I was over 100.  Toxic levels.  So, less is more.  I like the biotics research 2,000iu per drop.  The other one is only 400iu.  O put the drop right ok my finger, and lick it off.  Simple.   I probably wouldn't take more than 4,000 a day.  Have your levles checked to know for sure.  Wish you the best.

  • peacestrength
    peacestrength Member Posts: 690
    edited April 2015

    Sophiamarie - could you share why your cortisol is being checked?  It it correlated with Vitamin D levels?

    My Vitamin D level has been at 57 far too long at 8000 IU per day using Biotics sublingual.  My ND Oncologist just increased it to 10000 IU two days ago - I also take Vitamin K with it too.  She wants to see my range between 60-80.  If this new dose doesn't work, she switching me to a different Vitamin D and K blend.

  • yoga_girl
    yoga_girl Member Posts: 234
    edited September 2014

    Sleep Issues since BC

    This works for me:

    Ambien, 10mg (be sure you are in bed and ready for sleep)

     

  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited September 2014

    Got my Vit D level results back today....24.8, up from 17...UGH. Nurse is going to ask Dr what she wants to do to get them up. Taking 2000 IU's now. I guess I will have to ask her about the drops...?

    Looks like I have a ways to go, but at least it has improved a bit. 

  • SailingWind
    SailingWind Member Posts: 110
    edited September 2014

    Dear  Keep, check around 5.000 a day to start getting it up.  Research it. Doc recommend a lot more 

  • SophiaMarie
    SophiaMarie Member Posts: 352
    edited September 2014

    Peacestrength - yes, cortisol levels are connected with adrenals, and adrenal fatigue can lead to low vit D.  I've been looking into that, and I will be very surprised if my cortisol is normal.  My labs are on Fri - anxious to see what it all shows.

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