help with vit D levels

My oncologist has been testing me every 4 months lately trying to get my vitamin D levels up. He is of the belief that most Americans have woefully deficient levels of Vit D and that it has an impact on our health, epspecially a cancer patient's health. He also strongly advises taking Omega 3 capsules. I already take a prescription strength Omega 3 (called Lovaza) because I have inherited high triglycerices, but upon my Onc's insistance, am taking 4,000 IU a day. My blood count went from 13.4 to 36.2 but is still well short of the 50-70 that he wants to see. I trust my Onc; he is always at the very cutting edge of what's new and what is promising. I will continue with 4-6,000 IU a day until my levels are where they need to be.

http://clinicaltrialsfeeds.org/clinical-trials/show/NCT01169259

I hope this proves out.   It would be great to have an affordable, non prescription combo of supplements  to use as both a preventative to primary and recurring cancers.

Yes, the Vitamin D Council have already responded and criticized the IOM study. But then they (Vit D Council) are in the business of selling supplements and Vitamin D tests, their negative reaction is to be expected.

I wonder how many drugs are prescribed for the aches and pains of low Vitamin D. 

My sister had been complaining of leg pain for a couple of years.  When I finally convinced her to have her level of D checked the result came back at 16ng/ml.  Within one month of taking 4000 IU of Vitamin D3 her bone and joint pain completely disappeared.  She does not get any sun in the winter and only a tiny bit in the summer because skin cancer runs in both sides of our family.

When the Vitamin D Council first began many, many years ago, I do not remember them selling any supplements.  I do not think that's their only concern. 

Also, one must remember that not all supplements are created equal.  Some supplements to not have the dose they claim to have.  Consumer Lab tests many of them.  I do know that my D level has been going up, so I'm assuming my D supplement contains at least the amount it claims.

Hello again.

It's been a while since I posted, because I wanted to see the lab report on my vit. D levels before taking the D-2 the doctor gave me a prescription for early November.

I did start taking 5000 IU OTC D3 right away on my own. 

I finally received a copy that reads as follows:  Vitamin D  22 pg/mL, Vitamin D3  22  pg/mL, Vitamin D2  <8. 

So in a way I can understand why she gave me a prescription for D2, (but 50000IU's weekly for 8 weeks seemed alot to me), and the D3 at 22 was not addressed by the doctor. She is a D.O. which is as close as I can get to a doctor thats not just MD, was hoping she knew a bit more about Vitamins since D.O.'s are more known for "looking at the whole picture", I thought anyway.

Has anyone here had a lower D2 than D3 ? Puzzling to say the least, but definite need to improve both D's as soon as I can. Am not scheduled to see her again until February 2011, when labs will be repeated.

Thank you

dsgirl

Kathy044

Seems like my test was also called that.

"The heading: Vitamin D, 25-hydroxy, LC-MS-MS panel.

Test results: Vitamin D, 1.25 Dihydroxy  22  pg/mL   Reference Range:  15-72

                   Vitamin D3, 1.25(OH)2        22  pg/mL

                    Vitamin D2, 1.25(OH)2       <8

Reference ranges are established for the total 1.25-dihydroxy vitamin D. Values for subcomponents D2 (derived from plant or fungal sources) and D3(derived from human or animal sources) are provided for informational purposes only. This test was developed and it's performance characteristics have been determined by"   -----------------                        

it then gives the name of the lab, a doctors name, and it's location. I ame not sure I should post that info here as it seems inappropriate for me to do so,  however, I can add it was sent out of my state to Calif. I will try to add food sources for the time being that are high in D2 and D3, and hope for the best.

All my other blood results were done at the Onc's. office, the Onc. told me what types of tests he wanted me to have done due to tumor markers.  

The vitamin D test was done at my request by not mentioned other than it would be sent to my primary doc as he did not treat vit d deficiencies. Primary doc then prescribed 50000 IU weekly for 8 weeks, not telling me what results were, therefore I started reading here and googling vit. d. I soon found out then prescription was for  D2, but not knowing what my numbers were I was reluctant to start the 50000 IU of D2, and instead  decided to take D3 for the time being.

What a puzzle, it seems most that have taken D 2 are losing so much D3, yet I do feel I need to get both alot higher, I have severe joint, muscle pain, ache all over all day long, but mostly have blamed that on the aromasin until I read about vit d levels.

There is no way to cut the 50000 IU's, they are geltabs, in fact it say on the prescription not to cut. I am not sure what to do at this point, have other issues to deal this week, but will gladly hear what others have done in a similar situation, and read up some more about Vit. D,

Thanks,

dsgirl

My level was 17....just had my daughter tested (she will be 18 in less then 2 wks) and hers is 19!! She's on 50,000IU twice weekly for two months with a re-test at that time. I was prescribed, by my onc, 50,000IU once a week for a month. Then she told me to take 2,000D3 a day and retest in Jan. I take 5,000IU a day instead and actually take an extra 2,500IU once or twice a week (7,500) to help get my levels up. From what I've read, seems it will take forever to get them up where we need them to be. Especially at the 2,000/day level. So, we'll see how the 5,000 is doing come January. My daughters dr said depending on her re-test, we will move her to 1,000 - 3,000 D3 daily.

Hi JO:  Sorry about your weather in Ohio, my Mom lives in Central NY (Syracuse, NY) and has been clobbered with more than 5 feet of snow!   :O  (I live in Albany, NY; a world of difference, as in NO LAKE EFFECT, I do NOT miss it, though I hate my Mom is still in it).  It is 16 right now, tends to be colder/windier here and more ice. 

You really do have troubles taking the D3 don't you!!!   So sorry about that.  I also hope your dosing brings up your levels, albeit slowly, by Feb. is a good time to retest!   I'm still on the 5,000ius daily of the D3, as I've said before, I feel no different than taking the 1,000ius.  Yep, NO sun for me and having been tamoxified for 3 1/2 years, it's wreaked havoc on my retinas anyway (permanent damage--a *RARE* side effect of tamox), I'm now on Aromasin.  And, yes, I always wear sunglasses, waiting for a new pair with new (unbelievably strong prescription after no change 2 years ago.wowwwwwsa---that's tamox again).  RayBans with MIRRORS...HAH!  I will be the 'cool gal' in the sports car in the summer now!      lol...SUMMER!!!   (I am keeping that image in my head in this bitter cold). 

All my best to you JO, good luck with all of this and HAPPY HOLIDAYS!    ~juli

hello again

Jo-5: I am in the same boat as you, Vit. D3 does not agree with me, I started with a high dose, and took them daily and immediately had stomach pains, nausea etc. so I cut back to once or twice a week. I do need to get both levels up, and my D 2 was lower than my D 3, however the only choice for D2 is 50000 IU's. If I can only handle D3 at a rate of 1000 to 2000 IU's per week, I am actually concerned (scared) about taking 50000 UI although it's D2 not D3. Experimenting with vitamins probably not wise, it's sad that we have to do this on our own. There hopefully is a way to tell if we need the animal based or the plant based Vit d and how we process it ???? I remember reading a post about that, can't look back now as I lose my post, lol, but will make a note of it and ask my pc.

I do take 2 calcium tablets daily and they have 400 IU of Vit D in them, does not say if it's D-2 or 3.

I will see my pc soon, and don't plan take the 50000 UI until we have a talk about the vit.d levels again, maybe there's a smaller dose of D2 - it, of course, is not sold in the pharmacies around where I live, maybe it can only be had by prescription.

dsgirl

Jo - Does it make a difference if you take the D3 pills with meals?  (I can't tolerate calcium supplements either - with or without food - so I know what you mean about that.)

I started about 2 months ago. My level was 17, and Onc gave me 4 - 50,000 IU D2 to take once a week. I took 3 and then switched to 5,000 D3 daily. I have been taking every day since then plus an extra 2,500 here and there (approx 4-5 times a month) I just had labs/bloodwork done today so I will find out what my Vit D level is Tues of next week when I see my Onc. I am SO curious to see where it is now! I will let you all know what I find out.

Hi East Coast - yes, don't forget to post your results! 

We get such little time with the docs, it's really hard to know what's going through their heads during an appointment, because not enough time for them to explain all the reasoning.  For example, I don't know if the endocrinologist was totally accepting that taking 50,000 D2/week route is standard as a first step and then do 2000 D3...OR...she didn't want to say anything contrary to the oncologist's instructions and stop the D2 and start the D3.  This is what is so frustrating to me (not just Vit D but all treatment) because I want to understand the whys/rationales behind various recommendations.  From my limited research, the fact that Vit D is not a vitamin but a hormone was surprising and both D2 and D3 metabolize into 'vitamin D.'  So I guess they both do the same thing - but what I haven't found is the balance needed of each.  Anyway, that's on my list of Qs for next visit.

ps - endocrinologist also ordered a cortisol test which I'm just now starting to research to understand how that plays in the whole pic because that affects the adrenals and also has some implication on estrogen production by adrenals (esp for post-menop).  AGGHHHHH. 

JO:  I think I've said this before, but it certainly DOES seem like YOU metabolize the D2 better, maybe your body needs that more?  With increasing the D3 slowly, that's a good idea, I hope that you're able to 'stomach' it (pun intended??      Same here with the calcium, I cannot take any at all...how is your calcium/parathyroid levels been?  My pth is VERY high (11 times normal), my calcium is normal.  Take care...let us know!   ~juli

Janet:  Thank you for trying to explain that one!   So, can I ask what is the reason your endocrinologist is ordering this particular test?  I've never heard of it, and been to endocrinologists for decades.  Like what problems are they looking for?  Estrogen production?  I have heard of cortisol, and like many, have gained huge weight due to the tamoxifen/menopause, so I have 'lots' of cortisol (thick middle now).  I will have to ask my primary doc as I no longer have an endocrinologist about this test, thank you for bringing it up!   We who take the AI's, I think probably have a possible need for these tests.  Do you take an AI, if I can ask?  (Aromatase Inhibitor, adrenal glands secrete aromatase/estrogen in a nutshell)  I've written down the info you gave me (and will also research it) to bring up to either my primary doc or my oncologist, thank you most kindly~!    ~juli

**GOOD LUCK with your testing, and let us know?**

Janet:  Wow, you certainly had a lot going on!   (I HEAR ya on seeing more docs, UGHHH, but are needed)  I am hypo-thyroid, and hyper-parathyroid, as well as vitamin d deficient.  I've had 2 endocrinologists in past few years, they HAVE NO CLUE about any of it.   You mentioned being 'on same dose', do you mean levothyroxine for hypothyroidism?  I'm on a very low dose (50mcg).  Good luck with all of this, and I'd love to hear how the cortisol testing goes for you.  Hope that adenoma stays benign and needs no treatment.  ALL my best to you, and thanks for answering my (intrusive?!) questions!   ~juli