help with vit D levels

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  • thenewme
    thenewme Member Posts: 1,611
    edited January 2010

    Harley44, that's great that you're feeling better (...and you're my kind of bargain shopper, LOL!)!!  Keep an eye on this study about Vitamin D and depression:  NCT00960232.   

    It's not yet open for recruitment, but says:  "There are numerous indications for a relation between low serum levels of 25(OH)D and blood pressure, lipid levels, frequency of infections and tendency towards depression. Whether it is a causal relationship it is not known, and can best be studied with a vitamin D intervention. The investigators hypothesis is that supplementation with a high dose vitamin D (40.000 IU per week) will have a beneficia effect on these parameters."

    Notself - awesome that you're feeling better and not losing hair! Is it a known effect from vitamin D?  

    Estepp- so sorry you're having pain!  That stinks!  Does your doctor have any ideas about what's causing the pain?   Hopefully the neurontin increase will help.  I may have missed something, but do you suspect that it's a vitamin D deficiency causing the aching?  What does your doc say about your vitamin D level?  Do you know what your level is?  Does he (she?) give a reason for not wanting you to increase your D3 dosage?  The evidence seems pretty conflicting about what dosage and levels of vitamin D we should be aiming for, and it's really frustrating! 

    I need to find out my latest vitamin D levels, but my oncologist has me continuing on a 3000 iu D3 dosage for now, after 50,000 iu/week for a while, then upping to 1000 iu/day then 2000 iu/day and now 3000 iu/day, with regular testing.  

    Hope you get some relief from your aches.  It sucks to be finished with treatment and not feeling better!  Take care!

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  • Estepp
    Estepp Member Posts: 6,416
    edited January 2010

    My Ocno thought it was from my instant chemo pause ( no estrogen) and low D levels.. as I have had 4 bone scans in a year... ( no mets)... so... he ran the D test. I am calling right now to get them again.... so You all wise gals can read them...

    I have no idea why he says no more...

    My pain feels arthritic all over the body.,.. oh well... anyway.. I am off to call him... be back,

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  • Estepp
    Estepp Member Posts: 6,416
    edited January 2010

    OK... Here is EXACTLY how it reads.:

    Vit D. Levels:

    125 Serum  50

    25-D2: under 4

    25-D3 : 39

    25 total: 39

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  • fairy49
    fairy49 Member Posts: 1,245
    edited January 2010

    Laura (Estepp) your D3 is super low! You should be at least at 70 go to the 5000 per day to get them up! Kiss

    L

    ox

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

    thenewme,

    Hair loss can be a symptom of low Vitamin D3.  I can be a symptom of other things as well.  I wish I had not wasted my time with D2.  50,000IU of Vitamin D2 only raised my level 5 points and did nothing for my hair loss.  I did not have chemo.  Within two weeks of taking Vitamin D3 at 2000IU per day my hair loss slowed way down.  My aches and pains diminished. I have upped my dose to 4000 IU per day and my hair loss is down to the normal few hairs that everyone loses.  My aches and pains have disappeared as well.  I will have my level checked in a couple of months.  I would like to see it between 60-80. 

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  • Meece
    Meece Member Posts: 19,483
    edited January 2010

    so, notself, you say that your hair loss slowed, but has your hair growth increased or been affected at all? 

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  • kal52
    kal52 Member Posts: 26
    edited January 2010

    Hi, I have been reading this thread and thought you would be interested in watching this lecture on Vit D deficiency given to MDs.  It is long but extremely informative.

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

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  • Meece
    Meece Member Posts: 19,483
    edited January 2010
    I guess I am going to have to watch the video.  It must be good because this is the third link and recommendation for it in three days.  I open it to see how long it is and if I have the time to watch, but that is as far as I got. Undecided
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  • Estepp
    Estepp Member Posts: 6,416
    edited January 2010

    My Onco thought I was a little low.. but said I did not need over 1000....:(... can anything bad happen to me if I up it to 5000??

    I think I will call them again today...

    Thank you

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  • Meece
    Meece Member Posts: 19,483
    edited January 2010

    I can't wait til next month so I can discuss this with my onc.

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  • Harley44
    Harley44 Member Posts: 5,446
    edited January 2010

    Laura (Estepp) 

    The link to YouTube I watched states that D3 is easily absorbed, and I can't find any negatives about taking it...   I'm taking 6000 IUs/day, and I've seen improvement...  I still have my moments though.   I wonder why neither my pcp dr. nor my onc thought to tell me to increase my D??

    Good Luck!!

    Harley

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  • rgiuff
    rgiuff Member Posts: 1,094
    edited January 2010

    Harley, my Onc never did either.  I recently asked if we could test my Vit. D level, and Onc casually replied "Oh, we already did that, last January!"  And I had to ask him what was the level.   Oh, it's in the normal range, a little toward the lower end.  A multivitamin should help it get a little higher.

    Well, turns out my level was 28, and nobody ever mentioned it to me, good thing I asked, now I've put myself on the 1,000 IU dose daily, plus another 400 that is in my multivitamin.  It annoys me that something that could be possibly just as beneficial as the tamoxifen, was never noticed by them!  And yet he was horrified when I told him I'd taken several weeks break from the tamoxifen during the summer due to intense hot flashes.  Makes me feel like pharmeceuticals are all that he cares about.

    How long have you been taking the Vit D and what kind of improvement have you seen since starting on it?

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

    I was on 2,500 IU for about a month before I raised my intake to 4800 IU last month.  I am seeing some slight fringe around my hairline.  It is about one inch long.  I hope it is a sign that some of my hair is growing back.  I had generalized hair loss.

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

    According to this study, there has been no record of Vitamin D3 toxicity below 30,000 IU per day.

    http://www.grassrootshealth.org/_download/Heaney%20GrasssrootsHealth.pdf

    Scroll down to around page 45 to see the graph on toxicity.  But do read the whole presentation.

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  • prssnprss
    prssnprss Member Posts: 25
    edited January 2010
     After hearing about how low levels of vitamin D may increase risk of certain cancers, heart disease, osteoporosis, and a whole slew of other health problems, I began taking an additional supplement of about 6000 mg of vitamin D each day. Within about 4 days, I noticed that my joint pain from Arimidex was significantly reduced. . . and I wasn't even expecting that! So now, I am totally off of Naproxen and ibuprofin, and can actually kneel down and sit on my heels again! I have since learned that there are ongoing clinical trials testing this exact effect! Well, I unknowingly did my own trial and it is working for me.
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  • Estepp
    Estepp Member Posts: 6,416
    edited January 2010

    Thank you all so much.. I am going to take 5000iu until I see my onco in March.. and have my levels tested again.... do you all agree?

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

    I couldn't figure out why drug companies would be doing research on VitaminD.  Melinda, I think you have explained it. 

    Many women stop Arimidex because of the joint pain.  Other people stop their drugs because of side effects.  If low Vitamin D is the real cause of the side effects, then by eliminating the side effects more people would stay on their meds.  This makes the whole situation a win for patients because they can stay on meds and Vitamin D may help in other areas as well.  It is a win for drug companies because there are fewer side effects associated with their drugs.

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  • O3132W
    O3132W Member Posts: 211
    edited January 2010

    I keep reading post after post about Vit D and agree with all of them, but why does no one mention Calcium increase which is the real culprit to our bones.  My understanding is that the Vit. D's purpose is enable the absorbtion of calcium. 

    What good is large amounts of Vit. D without Calcium????   Does Vit D benefit us alone without Calcium equivilent.?????   Confused  

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  • Meece
    Meece Member Posts: 19,483
    edited January 2010

    Good question.  If you up your Vit D do you need to up Calcium?

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  • Hannahbearsmom
    Hannahbearsmom Member Posts: 431
    edited January 2010

    I had an appt with my med onc yesterday. She actually brought up the vitamin D3 issue--said that I should be taking 800-1000mg a day. She looked back in my record and I had not had a blood level for that so she added on to my labs for the day. I haven't heard from them with what the result was. I think I'll try to call tomorrow and find out.

    TCK

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

    O3132W, for helping with bone density, you need calcium, magnesium along with Vitamin D. For helping prevent BC, Vitamin D by itself should be fine but adding Calcium can not hurt either.

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

    We have lots of available sources of calcium in our diet. This is not so with Vit D which is why supplementation is more important.

    Hannahbearsmom: You said your onc suggested that you take 800-1000mg Vit D3/day. I think she meant 800-1000 IU. Vitamin D is usually measured in international units (IUs). 1 mg of Vitamin D3 is equal to 40,000 IU (1 mcg of D3 is equal to 40 IU).

    Further up the thread, people refer to their Vit D3 levels without giving the units used. This is confusing for others on the thread as levels may be expressed either in ng/mL or nmol/L (1 ng/mL = 2.5 nmol/L).

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  • Hannahbearsmom
    Hannahbearsmom Member Posts: 431
    edited January 2010

    MaryNY:  Sorry-I didn't mean to add to the confusion. You are correct--I meant to say IU not mg.

    TCK

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  • O3132W
    O3132W Member Posts: 211
    edited January 2010

    Unklezwifeonty:  Thanks for clarification.  Finally makes some sense.  Cathey

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

    Bump

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  • rgiuff
    rgiuff Member Posts: 1,094
    edited January 2010

    What does bump mean?

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

    Bump is used when someone wants to 'bump' the thread back to the top of the active topics list.  Make sense? 

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  • Harley44
    Harley44 Member Posts: 5,446
    edited January 2010

    bump means that there hasn't been any activity for awhile, so this will keep our thread in the 'active' mode...  :D

    Rose,

    I don't know how I missed your post...   I was taking 2,000 IUs of D3 and I also have  400 IUs in my Citracal, which I was taking 2 x day...  and a minimal amount is in my multivitamin...   So I was getting 2800IUs...   still not enough, in the Winter months, when our bodies won't get enough D from the sun, unless we live in the Caribbean.... 

    I increased my D3 starting  Jan 3rd or 4th...  but I raised it to 4000 IUs, and then to 6000, only cause I am taking the calcium 3x day...  I didn't run this increase by my dr...  I did tell my onc that I was now taking calcium 3 x day...   he didn't really say anything.    It was only a few days when I started feeling better, emotionally...   I had been considering starting an antidepressant, again, but now I think I may not need it....  

    I hope this is helpful...  I really DO think that vitamin D is a wonderful thing!   I read that even if we go outside in the dead of Winter, and sunbathe NAKED, we won't get enough D...   

    Hugs

    Harley 

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

    This thread is so important that it cannot be allowed to sink to the bottom of the forum.  The links to research on Vitamin D3 should be pinned.  I was on 50,000 units of D2 every week for 18 months under my doctor's care.  It raised my Vitamin D levels by 5 points.  After being on 3000 IU for one month my Vitamin D level rose by 30 ng/ml.  I am now at 4000 IU because it is winter.  I will have my levels tested in the Spring.

    One of the things we have not discussed is the effects of Vitamin D3 on not only all types of cancer but on other disease processes as well.  If you have not taken the time to read the links and watch the video, here they are again.

    This is the video.  http://www.youtube.com/watch?v=emjCzaHtSrg&feature=related

    This is the link to Grassroots Health http://www.grassrootshealth.net/

    This is a chart of the various diseases that could be prevented by adequate intake of Vitamin D3.

    http://www.grassrootshealth.net/media/download/disease_incidence_prev_chart_101608.pdf

    Please pass these links along to your friends and family as well as your doctors.  Vitamin D is not just about breast cancer.

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  • Nan56143
    Nan56143 Member Posts: 349
    edited January 2010

    Dear notself,

    I have posted about 7 other links for articles on D on page 1 of this thread, and I think 6 of them are from the vitamin D council. They also speak to many other diseases/illnesses which could be prevented by taking vitamin D3. Doesn't it make you wonder why doctors are not knowledgeable as to D's importance? Oh...that's right...their text books are written by the pharmaceutical companies. Big pharma can't manufacture vitamin D. Sorry I just have to get that little jab in every time I canWink

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