Vitamin D Takers?

AlaskaAngel

I posted a link to a presentation about Vitamin D on this forum a while back -- here is that post. Listening to the presentation takes about 45 minutes:

http://www.thelivinlowcarbshow.com/shownotes/3668/dr-michael-holick-the-vitamin-d-expert-episode-443/

(my original post on thread about vitamin D):

http://community.breastcancer.org/forum/121/topic/781084

vickilf

I've been on D2, 50,000 2X's a wk. and  D3, 1000 iu's the other five days, every since I was diagnosed with CLL back in 3/2010 and it still isn't up to where it should be. Yes I too have read articles that D3 is better then D2.    I've read articles that they think low D3 causes cancer.  

 My Naturopathy oncologist and my oncologist both agree this is right for me to get my D3 up.   Who knows who is right. 

SophieJean

 Sorry I haven't been able to read the whole discussion so hope I'm not restating ideas that have been already discussed. Its a very interesting conversation for sure.

I discovered my VitD was low just before I was first diagnosed with BC (almost 6 years ago). It seems to be just a Vit D problem for me as several PCP's and my oncologist have been unable to identify an absorption syndrome to account for the struggles I have to keep my levels in normal range. I'm a huge gardener and one summer I even decided to go without sunscreen and spent hours each day soaking up the rays, I'm stage four - why not. I was brown as a berry....and still had totally tanked Vit D levels.

What I do now..... 50,000 D3 weekly for a month, then biweekly, then monthly until blood-work shows me dropping below normal again. Then I start the routine again.  I use D3 from Bio-Tech Pharmacal Inc  http://www.biotechpharmacal.com/  who supply the Vit D used in a number of research studies. The trick to using a mega-dose is to be able to get regular testing so when you hit the normal range you can drop back to maintenance levels. I do have one side effect - at least I think its a SE of high doses. I think I start to bruise easily and started to have vein collapse when I needed blood draws. So now as soon as I start to to bruise from small bumps I back off immediately.

In my last conversation with my Onc he suggested the 50,000 is being used more frequently for his patients who's D3 levels are not budging despite typical recommended supplemented daily doses. Its an approach saved for 'nothing seems to work' folk and requires medical supervision. It worked for me when nothing else would.

Sophie

dunesleeper

I'm supposed to get my blood tested next month. I'm not sure I can afford it, but I think I probably ought to get those levels checked. I'll do it through my PCP instead of my ND. That way insurance will cover it. The ND is way too expensive for me at this time.

fredntan

My integrated holistic dr up mine to 4000 u/day. I am in 30's range now. Wants it at least 60's.



Told me to take it with a fatty food to absorb better. Take it with pb toast and my fish oil.

dunesleeper

I just heard that we need to make sure we are getting enough vitamin K so that all that vitamin D doesn't end up as plaque in our blood vessels. Anybody else know more about that?

itsjustme10

No, but people on certain blood thinners (warfarin/Coumadin for sure, maybe others) have to be extremely careful ingesting Vitamin K or any of the foods high in it, because it lessens the effectiveness of the medicine and leaves them vulnerable to clots, so I hope people are aware of that before self-medicating, even with supplements.

It's like this awful never-ending cycle - take one thing, which messes up something else, take another thing to fix that and it messes up a 3rd thing..and on and on.

Craftylass

Yes, I take vitamin D (with magnesium and calcium).  I don't remember the dosage as I'm in the process of moving and I've already packed the bottles (put the pills in ziplock bags).

I also take Vitamin B100 complex, Vitamins C and E, CoQ10 and iron.  Will be looking at Vitamin K2 and fish oils after chemo.  However, I'm actually hoping to add more fish to my diet once I live back in the US.  (I currently live in a landlocked area of China and I don't trust the fish here.) 

 

Pamdemonium

I will check out the presentation, thanks so much. I think my D was low long b4 early BC diagnosis in 11/11. Started generic arimidex in March and the fatigue has been intense. Met with nutritionist, oncologist, then at my annual gyn appointment asked him to run a full blood panel. D is at 27, which is low. So he prescribed 50,000 IUs 1x a week for three months with recheck of levels after that. Had to visit regular primary doctor for what I thought was broken finger but turned out to be osteoarthritis (more awseome news) and she says stop 50,000 after a month and then do 2000 IU/day of D. 

I am petite, small-boned, on fosomax already and 51. My my sister-in-law does not have BC or is taking fosomax but is taking lots of D - she's in the "normal range" but at the lower end. Her osteopath/natural provider has her on 10,000 IUs a day via some drops on tongue. This person says regular docs don't understand the D thing (probably up for debate). The issue is of course that D is fat soluble so toxicity can be an issue because it doesn't really go anywhere like the vitamins that pass through the system and out of urine, etc.

Took my 3rd "Big D" this week and my energy is better. I've also read that more D can help with joint pain, ache that accompanies the "estrogen death" pill for many of us.  I also am convinced I have adrenal fatigue that predates BC by at least a few years so I started taking an adrenal supplement this week but am looking for information on whether it is contraindicated for arimedex/generic.

I did not expect at 51 to have a weekly spreadsheet of what I need to take when but it is far better than the alternative.

Anxious to look at presentation but gotta sleep. I'll check it out this weekend. Many thanks. 

Justsayyes

Joining in!  Even though I was taking about 1600 iu vitamin D daily (1,000 in a multivitamin, and 600 in a calcium, mag, zinc supplement) it turned out I as still very deficient with a level of 18 as I recall.  I took the prescription D2 50,000 for six months and the level went up to 44.  I continued to take the weekly 50,000 as it was very easy and convenient to take a weekly gelcap.  I switched to 5,000 D3 daily, and am due to have my level checked.  Should be interesting to see if I am maintaining a more normal range.

The two main benefits I noticed from getting my level up to more normal was less muscle pain, I took way less daily ibuprofen.  The second was hair growth, I started to have to shave my legs, which I don't usually do unless it is summer.

As for doctor's interest in Vitamin D, my neuro was very intrigued, as studies have shown vitamin D deficiency to be linked to neurological conditions.  My primary family doc was agreeable to testing, but it would not have been done if I didn't ask for it to be added to the panel she was ordering.

SophieJean

Don't know if I can do this but the link requires a log in so just going to try to post the whole thing. Its good data to talk with your oncologists about regarding Vit D & BC.

 Vitamin D May Help Breast Cancer
Survivors Stay on Track
Yael Waknine
June 25, 2012 (Chicago, Illinois) — Supplementation with vitamin D3 may
enable breast cancer survivors to adhere to adjuvant treatment with
aromatase inhibitors, according to research presented here at the 2012
Annual Meeting of the American Society of Clinical Oncology.
Researchers found that women taking 30,000 IU of oral vitamin D3 weekly on
starting letrozole therapy achieved significant benefits in terms of fatigue,
joint pain, and disability from joint pain.
"Aromatase inhibitors are one of the most important endocrine treatments for
breast cancer, but the problem is that about half of the women have severe
musculoskeletal pain from these agents, and 18% to 30% report fatigue,
[resulting in] a discontinuation rate of about 10% each year," Qamar J. Khan,
MD, from the University of Kansas Medical Center, Kansas City, told
Medscape Medical News in an interview. He added that pain relievers are the
only available treatment option.
Debra Barton, PhD, RN, from the Mayo Clinic College of Medicine in
Rochester, Minnesota, who was not involved in the study, says she finds the
results "intriguing."
"There's been a lot of data to support the fact that in various populations,
vitamin D levels can be less than what we want them to be and are
associated with some of the pain syndromes that are similar to the syndrome
of discomfort and pain that's experienced with taking aromatase inhibitors,"
Dr. Barton told Medscape Medical News.
Fewer Report Musculoskeletal Effects
For the study, 147 evaluable women with stage I to III breast cancer were
enrolled to receive letrozole therapy and standard supplementation with
vitamin D3 (600 IU) and calcium (1200 mg).
Participants were then randomly assigned to receive either 30,000 IU of oral
vitamin D3 or placebo weekly for 6 months.
Results showed that weekly vitamin D supplementation yielded a significant
increase in serologic 25(OH)D levels during the first 3 months (22 ng/mL to
53 ng/mL) and then stabilized during the remaining 3 months (week 24, 57
ng/mL).
According to Dr. Khan, 25(OH)D levels below 20 ng/mL are considered
deficient for bone health, which is particularly crucial for women takingaromatase inhibitors, as they can cause bone loss as an adverse effect.
Using the Simple Descriptive Pain Intensity scale for analysis, only 37% of
women receiving vitamin D3 supplementation reported a musculoskeletal
event (joint pain, disability from joint pain, or resulting discontinuation of
letrozole) at 6 months compared with 51% of those in the placebo group (P =
.069).
In addition, significantly fewer patients receiving vitamin D3 supplementation
reported adverse quality of life events, including worsening of pain, disability,
or fatigue (42% vs 72%; P < .001). Vitamin D supplementation was not
associated with any adverse events, including stones and hypercalcemia.
Physicians Debate Whether to Implement Screening and Treatment
Measures
According to Dr. Khan, a baseline 25(OH)D level should be obtained before
treatment with aromatase inhibitors and addressed accordingly.
"We believe that once a person achieves a certain vitamin D level and
continues supplementation, the level stabilizes. Based on that data, vitamin D
[therapy] can be continued beyond 6 months. The only recommendation
would be to check vitamin D levels once a year," Dr. Khan advised.
"I think that the study is intriguing," Dr. Barton commented. "The issue is
really important and worthy of further study and addressing because it not
only makes a difference in health-related quality of life but [also affects] the
ability of patients to get the treatment that they need for their disease."
However, the question of whether vitamin D screening and supplementation
should be implemented remains "quite an issue of debate," she added.
"How long do we continue supplementation? Once you get people to a
certain level, how do you maintain that, and do you have to vary the dose
depending on the season or climate? How often do you check? These are all
very important context issues to consider, and I don't know that we have the
data to guide us in that. If you are going to supplement, that all needs more
study," Dr. Barton concluded.
According to Dr. Khan, a 2-year study is being planned.

Leia

I do not understand why people need double blind studies about whether they should take Vitamin D3, or not. 

There IS no downside. I have never heard of one death, attributed to an elevated Vitamin D3 level.  As I have said,my D3 level is 85. 

We have to stop looking to these supposed "experts" and their "studies." My 2006 2cm IDC, has not come back. Six years later. I refused radiation, refused the tamoxifen. And all of the "experts" said my breast cancer would come back.

It did not.  

And more important, for me, my September, 2011 Thermogram, my breasts, totally blue. No incipient cancer, at all, for 10 years.  Probably never, since my D3 level is 85 

But more importantly, I just feel GREAT.  

At the end of the day, that IS the goal.

I guess, it is just me. I have chosen what is right, for me, and I am doing it. And it doesn't cost anyone else, any $.  

AnnE16

I agree Leia!  My naturopathic doctor told me about the connection between low Vit. D and breast cancer in 2009 and SHE was the one who put me on Vit. D3.  My oncologist just mentioned it to me this year.  And he is supposed to be the expert and "one of the best" that I go to!   His ego is so freaking big though that there is hardly any room in the exam room for both of us! 

Thatgirl

I think the 15-20 minutes per day is based on the DV of 400iu. Also, some may have a hard time absorbing it because of the technique their using. 40% of the body should be exposed. You need to take it with fat. A fat that is broken down already not in a capsule or tablet . Take a cal/mag/vit d combo.



You do not have to get sun on your face. Get a floppy hat, put on some shorts and a tank top and enjoy the sun, If you can.

candygurl

Get 15-30 minutes of unprotected sun exposure two to four times a week. Each of us has different needs for unprotected sun exposure to maintain adequate levels of Vitamin D. Depending on your age, what type of skin you have, where you live and what time of the day and year it is, your need will vary. The farther you live from the equator, the more exposure to the sun you need in order to generate vitamin D. For instance, a fair skinned person, sitting on a New York beach in June, in the middle of the day, for about 10-15 minutes (enough to cause a light pinkness 24 hours after), is producing the equivalent of 15,000-20,000 IU's of Vitamin D. But the same person living further north in the U.K, or Canada would need 20-30 minutes to get that light pinkness, which is all one needs. Also, people with dark skin pigmentation may need 20 - 30 times as much exposure to sunlight as fair-skinned people, to generate the same amount of vitamin D. For more specifics, I recommend the tables in The Vitamin D Solution by Dr. Michael Holick.www.huffingtonpost.com/./vitamin-d-health-why-you_b_619558.h...

______________________________________________ 

Little Sunshine Mistakes That Can Give You Cancer Instead of Vitamin D

http://articles.mercola.com/sites/articles/archive/2012/03/26/maximizing-vitamin-d-exposure.aspx

 

Dx 1/10/2012, DCIS, <1cm, Stage 0, ER+, HER2-

Thatgirl

Zuvart,



Thanks. I wonder why people here are still reporting low levels of vitamin D after taking supplements and sitting in the sun for 15-20 minutes per day?



Most people on the board are taking 5,000iu - 10,000 per day and still have low levels. If your getting 20,000iu for 15-20 minutes it seems like June-Aug you would have stored enough to last you most of the winter.



Something is not adding up. Then again this is the information we all knew prior to our dx, but most if not all of us tested VERY LOW. I think the future will reveal these information is incorrect like they have with so many other things. The medical community just became aware that Vit D is needed more for than bone health.



If every cell in my body has receptors on them, I want plenty of vitamin D (Natural and synthetic) to reach them before something else does.

SophieJean

Zuvart, I can answer some of that question - Vit D must be fat metabolized because of where its stored. So when folks do the typical Vit D recommendations (for ones geographic location) and vit D is still tanked Dr's first look to see if there is a silent malabsorbtion syndrome like celiac disease. Those taking meds for GERD might also be inadvertently reducing their fat soluble vitamins. Finally, this might be an effect of chemo itself. So unless one is being tested and has their actual levels in hand you can't assume you are the "range". Surprisingly my sister just had her levels checked (she's cancer free) and she was also in the toliet. Its taking some serious up dosing to get her levels up so absoption might also be something else (genetic) as well. Many questions, few answers,

As to the sun being enough - five months, four-five hours a day, shorts and t-shirts, in the country out of the smog, no sunscreen, georgeous brown, no sun burns and my levels did not even stay the same - they dropped. Since my first chemo much as I love the sun I no longer count on it for my Vit D. However, I may well be an oddity. I wouldn't have know without the test.

CancerStinks

Hi SophieJean:  Just wondering:  I have zero science background and am regretting that decision so many years ago!  My question is, and you might not know, but you wrote:  re: Vit  fat metabolized because of where it is stored."  I thought Vit D was metabolized in the small intestine and that it needed fat in order to metabolize.  i.e. it isn't actually "stored" but the fat in our diets, not the buildup of fat in an overweight body, is the mechanism that allows our bodies to access the vitamin. Geeze;  I don't even know how to ask this question I'm so confused.  So do you know if vit D is actually stored in our fat cells?  I also seem to remember reading something that suggests that it might be stored because we can have too much of it which is difficult/impossible to do with water slouable vitamins since they are literally flushed out with our urine, sweat etc. many thanks.

SophieJean

I'd recommend starting with these sites - lots of info D at the first and easy to access. 

http://www.vitamindcouncil.org/

 and then a more traditional take at

 http://www.hsph.harvard.edu/review/spring07/spr07vitaminD.html

This second site is more specific about storage and lists blood and fat as storage locations. Oddly though increasing weigth is linked to decreased D levels...

My comments were loosy-goosy based on my prior casaul talk with my Dr's. I never looked it up to double check my understanding. Good reminding me not to add to the confusion caused by being unclear where my info is coming from.

Best, Sophie

CancerStinks

hello again SopieJean, thanks so much for the links.  I'll look at these a bit later.  I am doctor-free for the entire month of July!  And from now on July 2012 will always be refered to as independence month.  I am busy taking care of paperwork including my 2011 taxes and more, so once I can see the top of my desk again, I will be back on the cancer research roll.  Many thanks!

candygurl

ThatGirl, I suspect that most people on this board are not seeing their levels significantly improve because they either are taking drugs that interfere with absorption; they avoid the sun like the plague; they consume too much caffeine and/or they are taking less than 4000IUs per day, which usually isn't enough to help enter the cancer cells and induce them to undergo cell death process.  (There are more reasons listed in Dr. Mercola's article.)

Clearly, getting enough vitamin D is one simple and cheap thing we can do to improve our prognosis. However, in the allopathic world 30-50 ng/ml is considered adequate, which is false.  The medical community is great at spreading misinformation about vitamins and nutrition.  Unfortunately, there is no shortage of BC patients who hang on to their words like they are gold and don't have a ND to properly guide them. It's like watching a horse die. It's pretty sad.

AnnE16

Zuvart,

I was taking 5k and 10k rotating between bottles that my ND put me on.  Still couldn't get higher than low 50's which she told me was still too low for cancer patients.  So then started taking liquid Vit D and now it is too high (109).  I guess I got a little carried away!  Will be interesting to see my recent blood work and see if it came down at all since I haven't been taking it for past few weeks.  I also go out in sun with no sun screen anymore (when it is going to be short amount of time)

 I agree that the medical community is great at spreading misinformation or knows nothing at all!!  When i originally started taking Vit D thanks to my ND...she wasn't covered by insureance of course so she told me to ask my doctor to run a CRP test (is that the right name?  THe one that tests inflammation?).  I asked him and he said "why would you need that?  You don't need it."  So next visit saw the Nurse Practitioner for asked her for the  blood test and she said "sure" without any further questioning.  Now, I assume that by  now most of the gals on this board know that inflammation is a big red flag and an underlying symptom seen in all diseases especially cancer.  So my ND was aware of this but Dr. EGO didn't see the significance to the test.  He refuses to look at anything that he knows nothing about.  i would suggest everyone on this board to have an ND in their pocket.  WOuld you invest all your money in one stock in the stock market?!  At stage 4, I don't put all my eggs in one basket anymore!  I did when I was stage 2 and I wish I would know then what I know now!

CancerStinks

Hi Smiley2 and Zuvart:  ND, ND?  My mind is balnk.  What is a ND?  Thks! 

AnnE16

Naturopathic Doctor. They have more training on the body and nutrition than an oncologist does.

dobie

Greetings D gals,

New here. I went to see an endocrinologist today to get advise on how to manage my newly dx osteoporosis. I was also started on an aromatase inhibitor 6 weeks ago. Didn't want to just be thrown an Rx of Fosomax. The endocrinologist is national known and well published. Dr. Rao first published the paper recognizing the connection between biphosphonates and "atypical" femur fractures. Anyway, making this short story long. He will be doing some blood and urine testing and tailoring my treatment based on those results. I have been taking 3000 iu of vit D daily for three years and my level is 30. When I discussed with him ideal range, he shrugged. No good research to tell us exactly but says no toxic effect until 150. He commented that there was no money in vit D research. Its cheap and RX companies cant make any $ off of it. He said pick a number anywhere between 30-150 as your goal. But he did advise me to up my daily supplement to 5,000 iu. Can't hurt and might help. He also recommended that I get my 85 yo mother to take that to prevent fractures. New study out a couple days ago.



http://www.reuters.com/article/2012/07/05/us-vitamind-idUSBRE86414220120705



Best wishes and good health.

AnnE16

Dobie,

Well that is good to know that my last number was 109 and oncologist made it sound so bad.  I have stopped taking it the past 2 months but just got it tested again recently.  Don't know number yet. 

Did this doctor also advise when to stop taking the zometa's and Xgeva?  I wonder how much more harm I am doing to my body with these meds?!

wenweb

dobie Thank-you for posting the info about your visit with the endocrinologist and the Reuters article.  It makes sense that no money equals no studies.  As you can see from this thread, how much Vitamin D we should be taking is all over the board.  The advise you received from the endo doc was much more clearly stated.  Aside from the risk of kidney stones (although I wasn't sure if only infered the calcium), taking Vitamin D seems fairly harmless, and potentially extremely helpful.  My sense it that Vitamin D is now being recognized as the key player in bone health as well as a preventitive for breast cancer and recurrences.  Someone please correct me if you have taken away somthing else

dobie

BTW- dosage advised is 5,000. Too many 0s in my original post.



Wenweb, that's my take on vit. D as well. And it's + effects go beyond that to helping with BP, blood sugar and immune system in general. I work with pregnant women and we have been checking D levels and supplementing def with 50,000 iu weekly for last few years with protocol developed with Dr. Rao. Adequate D levels= lower rates of preeclampsia, preterm birth and gestational diabetes . Yes, I believe it's good stuff.



Smiley- did not discuss specific treatment yet so can't speak to your specific question. He said it would depend on lab work. He ordered a urine NTX, and blood work including biochem profile, phosphorus and parathyroid hormone level. He said if these were normal then we would just monitor. Says BMD is not always a good indicator for need of treatment and i am not at high risk for fracture at this point in my life. If labs out of range, then probably zometa, with my hx of BC. I like the idea of tailoring it accordingly. Your question sounds like an important one to ask your physician.

Princess-Green-Bird

Hi,



I hope someone can help me with this. I had a 25-hydroxy vitamin result of 35 which my pcp said is normal. From looking at the results my D3 is 23 and D2 is 12 which they combine to give a result of 35.



Is this the correct method of establishing a vit D result or should I only be concerned with the D3?



Thank you all!
Sorry, edited to reflect correct results





~Prin

CancerStinks

I don't know anything about how the # is determined, but know acceptable is between 30 and 60.  However, my doc said she wanted me, as a cancer patient, to be at least 45. Know this doesn't help any with your specific question but maybe an insight.