help with vit D levels

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  • coonie
    coonie Member Posts: 7,618
    edited May 2010
    OK........so I picked up my 4 little green pills yesterday, but it doesn't say anywhere whether it's D2 or D3???? Are they all the same color?? Pretty greenTongue out
  • SoCalLisa
    SoCalLisa Member Posts: 13,961
    edited May 2010

    there was a show on the channel for our University of California , San Diego

    station that recommended at least 40-60 units of blood vitamin D

    so I asked my doctor to test it along with the other stuff and he said "why" in

    that I know more than you do voice..so I just said I wanted to know for my

    own information

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

    coonie:  you have to have asked the pharmacist for sure, I don't know what d2 looks like, but sounds like you have the d3...best to ask to be sure, you can call them up, they dispensed it, they should be able to tell you.

    SoCalLisa...yes, and my oncologist and endocrinologist recommend I go up to a level of 70. That would be optimal for my current health issues.  I concur with my docs on this one!   :)   ~juli

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

    I really wish the doctors would read our threads!  You all have so much info to share.  Thanks!!

  • cs7777
    cs7777 Member Posts: 570
    edited May 2010
    This is going back a few posts but DATO you asked if time of year made a difference.  Yes, it will, if you live in a more northern climate. The data I've seen summarize to approx the following:  Below 34 degrees north - sufficient UVB year round to synthesize D in skin (approx. Los Angeles to Wilmington NC)Above 42 degrees north - insufficient for D synthesis from November-February (approx. No. CA border to Providence, RI)Far northern latitudes - insufficient as long as 6 months

    Vitamin D lasts in the body about a month or so, so if you live in Providence and get sufficient sun in the summer, you should be fine until about Dec, but from Dec-Mar you'll not make any in your body.  In addition, sunscreen completely blocks skin synthesis, as does shade, glass (car windows); the darker the skin the less is made as well.  Hope that helps.

    makmak: Very little research has been reported on daily doses long-term above 2000 IU/day.  There is some evidence saying that as much as 10,000 IU/day is not toxic but I haven't found long-term studies so its really a question.  Indeed our bodies can make 20,000-50,000 IU in a half hour of exposure in midday summer sun, although whether all of it is absorbed is unknown.  That said, the 10,000 IU/day IS much higher than todays standards, and even docs who are very pro-vitamin D frequently don't recommend that much. Since you're having kidney problems, personally it seems prudent to reduce any possible cause at least for a while, including your vit D dose.  If you take 2000 IU/day like your doc says then you're likely to still raise your level if you were low (unless there's something else off-balance as the gals above were discussing), just slower than at 10,000 IU/day.  In addition, perhaps you would work your way up more slowly - do the 2000 IU/day for a month, then if BUN is ok but D level still low, go to 3000 IU/day for a month, etc.  Just some thoughts.

  • cs7777
    cs7777 Member Posts: 570
    edited May 2010

    At the risk of beating a dead horse, I'm going to add my opinion on the doctors knowing/not knowing things.  My experience has been that the really good ones are really knowledgeable IN THEIR SPECIALTY, but beyond their specialty it's really a crapshoot whether they will be very knowledgeable or not.  If they happen to have an interest in some side topic then they may be at the forefront on it, but if not, then they may indeed be less knowledgeable than a patient.  Biomedical knowledge is really "silo-ed" and I have to visit a lot of silos to get all the care & info I need.  While it makes sense to many on this thread that nutritional things ought to be forefront to oncologists, that's not where the field comes from and so many of them really don't have more than a passing knowledge of the stuff we talk about here.  I personally have been surprised at how little nutritional stuff has been brought up by my cancer docs even when I ask, but my GP has been pretty proactive, so that's where I go for that stuff. 

    I think it's only fair to the docs, though, that we recognize that a lot of nutritional "connections" and "causes" that get talked about on boards like this and on tv are based on poorly conducted single studies that suggest the link of some vit to some disease, and/or someone marketing something with claims based on anecdotal evidence which is notoriously hard to interpret.  The docs have to balance how strong the studies are that suggest relationships and act accordingly, which may seem "wrong" to us if we're hearing the hype but not digging into the details.  So some of what we attribute to "ignorance" may from their view be prudent filtering. 

    For me it comes down to a ton of reading on my own, tons of asking questions, and advocating on my own behalf for things I think are important.  Others have said that as well. 

    CS

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

    SocalLisa - UC SD has great vitamin D info - As a UC Berkeley graduate, I have to say that I have a soft spot for all of the University of California schools.  The levels you heard from UCSD are the same my onc. likes.

    @Molly...wow - no one I know considers their doctors anywhere near the importance of G*d - perhaps in my grandparents generation.  I think todays patients are well informed, and have great information available to us. 

    I just do not see the point in seeing doctors that we don't trust.  I did not go to the first onc. I met - I chose the 2nd one I met and so far it is a good fit.  Absolutely, this is my life, my body so I am going to research the heck out of breast cancer - especially my specifics (hormone positive, etc. etc).  

    Knowlege is power. 

    cs7777- I live way north - and my level was 23 in November - I hate to think what it would have been in subsequent months had I not been supplementing.  Scary!   

  • coonie
    coonie Member Posts: 7,618
    edited May 2010

    Thank you all for the great information! I too believe we have to be our own advocate. I made sure I got copies of every test, scan, etc during treatment.

    I just called the pharmacy, and I was prescripted D3. Soooooo.....I guess I'm headed in the right direction.

    I'm going to go back and read the latest posts. I knew I could come here and find the answers I needed! Thanks everybody!

  • Luna5
    Luna5 Member Posts: 738
    edited May 2010

    I envy any of you who have oncologists you can trust with your lives.  I really like my surgeon, my plastic surgeon, my gynecologist, my internist and my bio identical specialist/gyneMD/compounding pharmacist/holistic doc.

    I am currently without an oncologist and will have to travel far far away to find one when I get around to it.  When I asked my oncologist if she would test my Vit D 3...she said "No, I'm only interested in tests that have to do with cancer."  This same doc fought me and fought me on getting the OncotypeDX test all the while trying to push me into doing chemo.  I could go on and on but.....  Anyway if you want to call this doctor bashing...then go ahead.......but I have friends who just trust whatever the doc says and never research and never ask hard questions.....soooo....What happens if they end up going to this doctor who is clearly not keeping up?  That is why I think it is good for us to share the good and the bad stories about our docs so maybe others will learn what a doctor should be like from those who have great ones and so they can learn to ask enough questions to have the good sense to RUN from an oncologist like the one I was referred to.  My problem is, in my town all the oncologists are in the same practice so I can't just switch locally.

  • elimar86861
    elimar86861 Member Posts: 7,416
    edited May 2010

    Yes, yes and more YES!  Luna5, I second that emotion! 

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

    Luna - that is terrible that you can't find a decent onc. in your area - AND I can't believe you had to fight for the oncotype - and with a score of 1 you are to be applauded. I hope your onc. learned something from your case as you would have had no benefit from chemo at all. 

    I don't call that doctor bashing - just the truth.  I also am not implying that I read a lot of doctor bashing.   The sweeping generalizations such as "all doctors are out of touch - none of them learn anything about nutrition or keep up on current info outside of their speciality"  is what i was referring to and I don't even know who in particular have written such things.  I just know that once in a while I read it - and wanted to share that my onc. is well informed and to be trusted.   Not all doctors are morons.  But, all doctors are people and as we all know - some people are idiots.

    That is why this board is so great - we can all learn from each other.  I was taught at a young age to question authority - but I don't think all in authority are corrupt - at least not yet!

    edited to add that my onc. would not even discuss the possibility of chemo until I had my oncotype score back.  She loves the oncotype as it is a step closer to indiviualizing breast cancer treatment. I have met many patients that fly in to have 2nd opinions, consults and some actually doing chemo from across a couple of states - now I know why.

  • Luna5
    Luna5 Member Posts: 738
    edited May 2010

    Aprilgirl1.......That's right now you know.  If my cancer comes back, I will be traveling somewhere and will certainly ask here for advice of where to go if that unfortunate situation arises.  Oh, and by the way...my score was 0..not 1.  0% local recurrence and 3% chance of distant over 10 years.  Now that assumes Tamox which I have chosen not to take...so my real score is probably a little higher...but even if I double it..it would only be 6% distant ...and 0 doubled is still 0.

    For now, my regular doc, an internist, is more up to date than that oncologist as he runs 3 cancer marker tests on me and the onco only wanted to do the CA 27.29.  I can still get exams by my gyno and the breast surgeon and it is a 6 hour round trip to Jacksonville Beach, but I am very happy with my Bio Identical Doc over there.  I am planning to travel for my 3D tattoos so I can certainly travel wherever I need to if this cancer recurs.

    But for sure not all docs are idiots....Finding the great ones is the tricky part. 

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

    I travel 90 miles (one way) to see a Med Onc that actually listens to me and works WITH me rather than just dictating to me.  One local Med Oncs actually "lost" my records and never made a follow up appointment for me when I made it clear I was not going to do chemo.  I think we need to do this for ourselves--going to a doc you don't trust just adds stress. 

    If I can ask what is probably a dumb question--what is a "Bio Identical Doc"?  I've seen the term "bio identical" a few times but I haven't found any info about what this is.  Can someone recommend a website or other source of info about this?  I'd like to learn more.  Thanks!  

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

    I live 7 minutes from a regional medical center and I drive 6 hours round trip to see my surgeon, oncologist and my radiologist.  I have a local doctor but if he ever finds anything wrong, I will still travel 6 hours to get it fixed.  I would never have surgery done at my local hospital.

    Luna5,

    If you have to travel then do it and enjoy the ride.

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

    There are a lot of hospitals in the general area that I live in.  I can drive 20 miles to a community hospital, or take a 30 minute ferry (not including wait time of course) and drive or take a bus for 10 minutes from the ferry building.  I take the ferry which was a drag during weekly CMF for 6 months and radiation, but for the quarterly appts not so bad.  I try - even during chemo (CMF is very easy to tolerate) to do something fun while I am in the city - meet a friend for coffee, shopping, or just enjoy the city.  If any of you have ever commuted by ferry you know that it takes a lot longer than the 30 minute ride as they only run every hour or so and it is difficult to time doctor appts perfectly.  The 3 minute radiation zap took me at least 5 hours a day from door to door.  Yes, there is a radiation facility that just opened about 10 minutes from my house but I feel that confident in the NCI where I am a patient.

    Notself - so true - if you have to travel, then do something that makes it enjoyable. My ferry ride was rated in the top 10 of beautiful commutes  or beautfiul scenery on msnbc or something like that! 

  • Luna5
    Luna5 Member Posts: 738
    edited May 2010

    NativeMainer...If you ask on Natural Girls and the Progesterone Threads, someone will probably be able to tell you of a knowledgeable doc in your area. It is difficult to find one who is knowledgeable about bio identical hormones.  The one I go to checks all my hormones and B 12 and Vit D 3 and others.  If you want you can read my doctors web site at agelessandwellness.com to get an idea of what we are talking about.  I think he has patients from as far away as California.  Maybe they do phone consults.

    I use bio identical progesterone cream which I get from my M.D. in Jacksonville who is a Gynocologist, Holistic Board Certified and a Board Certified Compounding Pharmacist who makes his own cream.  Progesterone is what causes cell apoptosis (cell death) in bad cells like cancer cells.  Any deformed or old cell I think.  Anyway, I had almost no progesterone and have only brought it up some but not enough so my doc increased my dosage.  People get all weird about the ER+ PR+...but my research says I need to cut out as much estrogen from plastics, foods, cosmetics, shampoos, conditioners, soaps etc. etc.  but I need Progesterone or bad cells will multiply because there will be no hormone there to tell them to die.

    It is all about balance.  Have you read Dr. Lee's book "What your doctor may not tell you about breast cancer"?  Suzanne Somers also has a great book filled with interviews of various doctors about what they do for thier patients' cancer protocols.  In it is a list of doctors across the country who are current on hormones and how they relate to breast cancer.

    Remember when all the gynecologists were prescribing Premarin (pregnant mare urine) for their patients????  Well, someone knowledgeable in bio identical hormones would not do that.

    Fairy49 is much more of an expert on bio identicals than I.

  • coonie
    coonie Member Posts: 7,618
    edited May 2010

    How long did ya'll say it takes to start feeling better??? LOLOL

    My bones are still hurting.....and it's been 2 days!UndecidedTongue out

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

    Coonie, LOL!!!  Are you sure you're not feeling better yet?  I would say it was about a month after I started taking mega doses of D that I started to feel better.  I hope it's sooner for you!

  • coonie
    coonie Member Posts: 7,618
    edited May 2010

    hehehe LOLOL....Mak....I'm SURE I'm not feeling better yet. Ya mean I gotta wait a whole month!!!! I think I might just turn in my keys and driver's license.....this working and running errands is for the birds!!! LOL

    Have a good weekend!

  • coonie
    coonie Member Posts: 7,618
    edited May 2010

    Still hurting hereUndecided

    LOL

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

    My sister saw a reduction in pain in her legs after two weeks of 4000 IU per day along with 250mg magnesium and 1200 mg of calcium.

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

    Thats great that she saw results so quickly.  Coonie, only 12 more days!!

  • Luna5
    Luna5 Member Posts: 738
    edited May 2010

    What kind of magnesium do you recommend.  I have a calcium that includes a different kind of magnesium than the kind stated on my bottle of magnesium.

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

    Magnesium Citrate is the most absorbable.

  • Luna5
    Luna5 Member Posts: 738
    edited June 2010

    Thanks notself!

  • elimar86861
    elimar86861 Member Posts: 7,416
    edited June 2010

    With so many here on Vit. D supplements, has anyone noticed that their skin is not as quick to tan or burn from sun exposure?

    Two out of three days this long weekend, I was out in the afternoon doing yard work. I only put sunscreen on my face and the rest of me was still winter white.  After an hour and a half or more each time, I barely got any color at all, whereas normally that would be enough to have gotten pink shoulders.  That would be great if the supplement offered internal sun protection too.

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

    Coonie, hope you're feeling better already!     (Oh, my 'winkie' didn't work)   ;)   ;)    :)

    elimar:  I still burn very very quickly in the sun (I don't like to be in the sun at all), and I'm on high doses of vitamin d the past couple weeks.  I'm very fair-skinned like you, winter-white, lol.  I try to use sunscreen in the sun, but mostly, I do try to stay out of it.  (Yep, compounding the problem of BEING vitamin d deficient in the NorthEast).    ~juli

    **Some of us as I noted cannot take calcium supplements, and I also cannot take magnesium (laxative effect for me, ugh!)**   :O 

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

    If magnesium acts like a laxative for you then most likely you do not need magnesium and are getting enough in your diet. 

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

    Very true, notself.  That was a 'protocol' medication when admitted to a head-pain clinic.  They gave everyone the same meds, they learned while I learned a few things there as well....treat everyone INDIVIDUALLY!   :)  (Introduce meds one at a time, not 13 at once, d'oh!)   LOL...lots of stories could be told here I'm sure by everyone~~~juli

  • seaotter
    seaotter Member Posts: 1,083
    edited June 2010

    Hi girls. I recently saw an alternative doc. He recommends magnesium glycinate. I was doing some research on it and found this: 

    http://www.nutrichem.com/Ask-The-Expert/Magnesium-Glycinate-Frequently-Asked-Questions.html

    Hope this helps.

    I just found out my d3 is at 67!!!!

    Patty

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