help with vit D levels

Wow! My nutritionist had my Vitamin D levels checked....funny, no other Dr. not surgeon, not oncologist, not primary ever suggested we have them tested....my results were dismal...a 16.6 which is lower than low.  I'm now on 5,000 IU a day.  Any side effects I should be aware of?  I take D at night cause once before I took Vit D on my own and it seemed to make me sleepy.  Is that a side effect? My nutritionist said it could take six to nine months before we see an improvement in numbers.  *sigh*

Wow, Rocket, You are really up there. 

Wintermoon6, Get rechecked in 4-5 months.  You should see your numbers go up.

Sam52:  I did just peruse the article and have printed it out to show my endocrinologist.  I don't know what to think!   I have always believed in the link though, of vitamin d deficiency, high PTH (parathyroid levels) and my non-familial history of bc.  (I am the only one in family with parathyroidectomy and bc).  I will see if my endo dismisses it, or accepts it.  THANK YOU Rocket!

~juli

Hi susan_CNY, yes I take B12 and have done for years. My doc used to give me a jab every two to three months as my levels were never normal.  Apparently I don't absorbe some nutrients the normal way.  Now I take 4000mcg tab form per day as well as 4000u of D3, B6, B3, magnesium, fish oil, CoQ10, selenium, glucosamine and folate.....this doesn't include the meds for high blood pressure and  gurd and Arimidex....................I think I rattle when I move...lol....but I feel pretty good.  I wonder why?

My D levels were quite low when I started treatment in January, about 28.  In addition to taking 2000 iu a day I was given an rx for 50000 iu weekly.  Also told to try to get outside for at least 20 minutes a day at around noon (with no sunscreen) so my body would make its own, by far the best way to get it.  It took 6 months, but now I am up to 61, which is the minimum my oncologist wanted.  She said I could drop down to every other week for the mega dose, but she still wants me taking them, especially with autumn coming as we don't get enough sun in the northeast to make our own D most of the winter.

 If anyone's doctor is not checking their D levels, then tell them they should.  There are tons of studies about the effects of D not just on breast cancer, but many other health problems.  I have heard that its possible to OD, but the amount you would have to take is so ridiculously high I think it would be virtually impossible.  So get your D up people!!

Totally agree that JO's daughter should be vitamin d tested.  What doc would refuse that, truly?  And, agreed too, if the doc doesn't agree, he/she should be 'fired'.  (I've done that before!)   I've learned so much thru this thread, and I truly thank everyone here.  I'm VERY disappointed in who I thought was a good endocrinologist (this is my 3rd)...and a lousy vitamin d3 level, high parathyroid.  We will definitely have a good talk this Wed~!   Thank you, and as Makraz said, good luck to everyone...good gosh!   This just gets more and more complicated!    :O   ~juli

Enjoy the Fall...my fave time of year...cooler---ahhhh!!!  Hot flashes/night sweats can tolerate the cold better than the heat, I'm sure most of you can relate!     

Okay, today was my appt. with my endocrinologist, and I'm thoroughly disgusted.  I had thought I had a good doc (have had a few endos, but moved so had to switch).  He said my bone density was 'fine', NO need for a biphosphanate (sp?)/bone drug; that my Vitamin D levels were GREAT (total is 46, up from 35, D3 is 13).  I said, what?  He said that 1,000ius of vitamin d3 were FINE to take, I said well, that's what made me deficient, so he said, okay, take 2.   He weighed me, I weigh a ridiculous figure, and he said, "OH you LOST weight since last time"...no, I gained 14 pounds!  He said, no...then double-checked the scale, and says "OH, you're RIGHT!!"...ARGH!

Being the proactive person I am, I called my oncologist, who did prescribe the Aromasin, instead of the tamoxifen.  I needed to give oral permission to take it!  They are calling it into to pharmacy, to stop the tamox until Monday, then go on the aromasin, the nurse is sending info by mail to me about the AI.   I also called my primary doc, who was the first to suggest a bone drug, he said since I had the hyperparathyroidism (told him what endo said), he wanted a fax from my endo saying that it was okay for him to prescribe a weekly bone drug.  I called and left a message, so we'll see if the endo goes along with THAT...I think he will if another doc is asking about it.

HOW frustrating is all of this?  One HAS GOT TO KNOW what one needs before we go to any doctor????    YEPPPPPP!   I am taking 3,000ius of Vitamin D3 on my own daily.   I will also find out the s/e's of the aromasin next week, hoping it doesn't increase the migraine pain.  I don't take pain relievers (all narcotics make it worse).  FUNSIES!    (not)

Thank you ALL for your info here, it really has helped me...OH, and that article on hyperparathyroidism and bc?  I showed it to endo, he gave it back and said he'd ask his fellow endos if they have a higher incidence of patients with parathyroidectomy and bc.  We'll see.

Thank you for listening (did I give anyone a choice, lol??)    Sorry!   ~juli

Sam:  Thank you, you are too kind.  I am VERY wary that my endo will 'really' discuss that article with his colleagues, as he gave the article back to me.  I am waiting now for confirmation that my endo will fax to my primary the 'okay' for him to prescribe the biphosphanate.  If I don't hear, I will call endo's office again, I have NO problem following-up, and then following-up again!

Oncologist's office called, and they are calling in the Aromasin, to stop the tamoxifen as of tomorrow, then take the Aromasin as of Monday.  They needed oral confirmation from me, and are sending me info on the AI in the mail.  I also hope that Aromasin is as good to me as the tamoxifen has been (just hot flashes/night sweats, that is tolerable).  We shall see. 

I'm glad you had a good experience with Aromasin, Sam, and yes, I responded to your other post, thank you kindly!   I bet in the UK things are alot different, I'm sorry you had so much trouble with your endos and parathyroid.  I hope all that has settled down for you now?

All my best~~~juli

Blundin:  Thank you for that article, I'm printing it out and sending it to my various doctors, and asking the question:  WHAT is the ideal dosage of D3???  My endocrinologist last week said the D3 was "NOT IMPORTANT"...and my level is at 13~!   I am feeling quite stupid, cus I 'raved' about my 'team' of doctors, and this guy was a complete jerk the whole visit (dismissed my 10% bone density loss as well, weighed me and wrote down the wrong weight, I had to correct him...when I questioned him about his dismissal of these things, he just shrugged--I don't need a doc who is NOT looking out for my best health interests, especially with now taking Aromasin, bone density loss, vitamin d deficiency, bc, et al).  

Best wishes to you Marilyn, I now take 3,000ius of D3 a day, I may up it to 4,000 next month, then 5,000 the month after...doing my own dosing thang!       ~juli

Fascinating thread.  My internist took my Vit D levels a few months ago, and my level was 14.  She suggested I take 5000 Vitamin D3 per day to try to increase the level, and we'd retest.  I was just tested again and it is now 28.  An improvement, but still low.  I confess I missed a number of days of taking the D3.  I am now going to be really conscientious about it, since I know a lot more about it, and I will be retested again in January.  

Is taking 5000 D3 a day enough to raise it to an acceptable level or does anyone think I should be taking more?

Also, if I am reading this right, I should also be taking Calcium/Magnesium supplement, right?  Can someone suggest the correct dose of the cal/mag for me?  I know it's probably in the thread but I just read almost all of the 37 pages here, and I can't possibly go back and read it all again now!    

Thanks for this informative thread and for any advice you may have.

Judy 

(edited for typos) 

Yeah really!  I'd never take such a huge yearly dose of vitamin d, 500,000ius???  NO way!

I am awaiting my primary doc to call (he called already this a.m., but down with migraine, so was in-bed).  I'd faxed him the report yesterday that blundin posted (THANK YOU) about the vitamin d.  I wish him to take over from my endocrinologist who yes, I raved about, but now have totally lost respect and confidence in him.  Will see if primary doc will take over, endo now only prescribes the levothyroxine for my hypo-thyroidism.  Primary can follow that.  Primary doc is the one who suggested the bone drug due to almost 10% bone density loss since 2005, I'm now on Aromasin, since this past Monday after Tamoxifen for 3 1/2 years.  So, of course, there will be MORE bone density loss, especially with vitamin d3 deficiency (which my endo said was totally NOT IMPORTANT).  WHEN will these docs get with it???   Frustrating.

Thanks for letting me rant (again...sorry!)   ~juli

Dear Judy,

"They say" that we need about 350-400 mg of Magnesium for our bodies to readily absorb the vitamin D3. As to the calcium, about 1200 mg, but there are many articles which say that vitamin K2 is the one to take and not the calcium. My daughter who was dx with TNBC in June of 2007, does not take calcium...only K2, the same as me. She takes 5000 iu's of D3, as do I. Her levels were 74 ng/ml and mine 76 ng/ml at last testing about 2 months ago.

My friend in Maine is taking 15,000 iu's a day and her levels are 76. She was dx with TNBC in January of 2009, had a double mastectomy, and no further treatments. She is doing very well, and is in excellent health.

Some have a problem with over 5000 iu's at one time, and one is my daughter. She became nauseated. So now, I have suggested to her that she take 5000 iu's in the morning and 5000 iu's before bed. The D3 is stored in your liver, and if you are in the sun your body can absorb 20,000 iu's, but, that is only if 95% of your skin is exposed, and absolutely no sunscreen.

The "acceptable levels" are 32 ng/ml to 100 ng/ml, but for anyone dx with cancer, they should be as close to 100 ng/ml as possible. There is a woman on this site whose levels have been ..I believe...108 ng/ml and her doctor wants them to stay there. She has been NED for some time now.

I hope this helps.

Nan

I read this on Naturalnews in an email this morning, but it failed to state that she will be given prescription strength D, and not OTC. I guess her doctor is not "with it" either as that will not get her levels up.

http://www.associatedcontent.com/article/5527076/gwyneth_paltrow_diagnosed_with_osteopenia.html?cat=70

If I understand my own research.....Calcium supplements do not go to the bone unless supported by their companion nutrients which I am no expert on but trying to learn.  I also know that just because my blood calcium score is perfectly in the range does not mean there is enough calcium in my bones as when you have low blood calcium your body takes it from your bones.  I will soon do a 2:16 urine test that also tests whether calcium is being leached from my bones (don't ask me how they can tell that from a urine test).  My question that no one so far has answered is this.....if I ingest calcium either in too large a quantity or without the supporting co vitamins and minerals, does it become micro calcifications in tissue?  Does it become artery plaque?  I know our heart needs just the right amount of calcium...not too much and not too little.

So, I have some calcium citrate sitting here and some days I take 500 to 1000 but am never sure what to do about this calcium.

HELP!