Bunk! Sorry. But the Vit D does store and so does have residual levels. And it would not go say from my level of 66 down to 19 which was my level at dx. It can only be increased through sunshine and supplements with small amounts added in through things like milk. Meanwhile, while he's having her go off the D her system is having to do without all the good things that D encourages for the down time as well as the time it takes to bring levels back up.
Obviously, I'd steer you over to the Vit D council and tell you to write them an email with the question because talking to me you'll just get highly professional responses like "BUNK!" (I'm kidding Tasoulla).
I just read an article this morning about testing Vit D levels and apparently there are different ways to do so. The best way looked at something which remained at a stable level over a longer period of time (it seems like it was about 21 days) but there are some tests that look at something in our blood that changes daily based on our intake. The article mentioned that there are new standards in place so that all labs will do the test the same (the 1st example), but perhaps that is not mandated yet or perhaps some doctors aren't aware of that change. I also wonder if they have to order the correct test. I'm sorry I didn't pay more attention to the names of the tests, I was just browsing. I might have read this on the Vit d council website.
I guess my train of logic goes along the way of; my levels are what they are, whether I'm supplementing or not on any given day; they need to be in the mid 60's so somebody is going to have to do some fast talking to get me to drop taking them for 7 days, especially since we TN'ers notoriously have low levels.
When Susan was diagnosed and we began learning about the various risk factors for TN, this vitamin D thing jumped off the page at me. Susan really had no other risk factors - she had eaten an extremely low fat/low sugar mediterranean diet her entire life, she had no weight issues, she exercised regularly, BRCA negative, non-smoker, etc. The one thing that never did (perhaps due to her culture) was spend any time at all in the sun. Coincidence??? Anyway, we began taking D3 supplements after her diagnosis and she's worked her way up to around 5,000IU/day. She intends to try spending more time outdoors now that it's getting warmer and plans to have her blood tested soon. For me it's a more difficult decision (about going outside) since I had melanoma in 1996.
Lots of sunblock when you accompany your lovely wife to the outdoors!
Lee in Denver
dx6/09,stageII,gr3,(L)mastectomy 7/09,ACx4,Taxolx7,Avastin study,gall bladder surgery 1/10,4/11 Stage 4, mets to lung, 4/11 Started Taxotere and Xeloda, 5/11 Taxotere stopped, off Xeloda
I hope I've mentioned this before but it bears repeating, when I got my levels up in the D I found that I no longer sunburned and I used to be an easy target for the sunburning. Be very careful of the sunblocks that you use, there is a difference and some cause a certain amount (barely noticeable) of inflammation. Interestingly, it's been noted that the D levels worldwide went down almost simultaneously with the advent of sunblockers...
Has Susan's Vit D level been tested? Most of us at dx are extremely low. It's good to know your starting point, then I'd recommend testing every 4 to 6 months to see if the levels are increasing. It takes time to build the Vit D levels back up. It's good you've been proactive with Vitamin D supplementation. Until I joined this forum, I knew nothing about Vitamin D levels or even asking for a test. Nancy, Connie and Mainy helped educate me.
Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
We had it tested early on, when I first learned that it could be a problem. They told us it was "normal," whatever that means. We are going back to see Susan's oncologist tomorrow and will ask to have it tested again. What numbers should we look for?
Optimal Formulation: Vitamin D3 (which is the cholecalciferol form), not Vitamin D2 (which is the ergocalciferol form). No standardization issues.
Optimal Dosing:
The best way to determine the optimal level for antitumor benefit
is through a simple 25(OH)D (Vitamin D3) assay or laboratory test,
also known as a cholecalciferol assay / test (or the "25-Hydroxy Vitamin D" test). Aim for a target level for 25(OH)D of at least 66
ng/ml which typically will require at least 3000 - 4000 IU of
Vitamin D/daily, remembering that each 1000 IUs of Vitamin D
elevates serum 25(OH)D levels approximately 10 ng/ml above base.
Benefits of High-Optimal 25(OH)D Levels It
is known that 52 ng/ml levels are associated with a 50% reduction
in risk of breast cancer, compared to 13 ng/ml (per Cedric
Garlands's 2006 APHA review). And there is now compelling human
clinical data in a case study presented by John Sievenpiper and Simon
Pearce with the Royal Victoria Infirmary of high-dose Vitamin D3
(HD-D3) averaging at 10,000 IU/daily that has induced complete
remission of distant metastasis (bone), with implications beyond bone
metastases.
Therefore,
for (1) patients with active malignancies, and/or (2) those at
elevated risk of malignancy, recurrence or metastasis, a target
level of at least 66 ng/ml would be of greater potential benefit.
The Special Needs of African-American Women: In
addition, adequate testing and supplementation are even more
imperative for postmenopausal African-American women who, as the
NHANES III study has demonstrated, have lower serum 25(OH)D
concentrations at all ages than do whites, and the research of John
Aloia at Winthrop University Hospital has established that this
population is relatively resistant to low-dose supplementation,
finding that supplementation with 800 - 1000 IU vitamin D per day
for 3 years effected absolutely no raising of 25(OH)D or PTH
concentrations , in contrast to other racial/ethnic populations.
But
note that there is considerable interpersonal variation, so
retesting is prudent: three consecutive monthly readings are advised
to assure optimal 25(OH)D levels (amounts of 10,000 IUs/daily and
even above have been found unproblematic).
VHD-D3 for AI-Induced Disability It's been recentlyestablished that Vitamin D deficiency and insufficiency may be a, if not the,
major contributor to musculoskeletal symptoms and bone loss
observed in women taking aromatase inhibitors (AIs): Carol Fabian at
the University of Kansas, along with Qamar Khan and their
colleagues, showed that supplementation with VHD-D3 (very high dose Vitamin D3) in the form of injectable 50,000 IU weekly can reduce musculoskeletal symptoms and fatigue in women with suboptimal vitamin D levels.At
baseline, 63% of women exhibited vitamin D deficiency
(<20 ng/ml) or insufficiency (20–31 ng/ml). 25(OH)D levels
>40 ng/ml were achieved in all women put on 12 weeks of 50,000 IU
D3 supplementation with no adverse effects, and after 16 weeks of AI
therapy (letrozole (Femara)), more women with median 25(OH)D levels
>66 ng/ml reported no disability from joint pain than did women
with any levelsbelow, by an order of 52% versus 19%, respectively.Thus,
very high levels of 25(OH)D, >= 66 ng/ml, are needed to
significantly reduce disability and fatigue from AI-induced
arthralgias/myalgias and associated fatigue.
Clinical Lessons re High Dose Vitamin D3:
Benefit Objective
Target 25OHD (aka, 25(OH)D Vitamin D3 Level
OptimalBone Health
> 42 ng/ml
Anticancer Activity
> 52 ng/ml
AI-Disability Relief
> 66 ng/ml
Please check out the website and link for additional information:
Martin, when I first had mine tested in the wayback part of this journey, they told me mine was in the normal range too...at 19. "Normal" is a word I now question whenever it crops up in my discussions with medical folk.
Endocrine Society Says Vitamin D Deficiency May Be Common in U.S.
June 6, 2011 -- Noting that vitamin D deficiency
is "very common in all age groups," new treatment guidelines call for
many Americans to take more vitamin D than is currently recommended.
The guidelines, from the Endocrine Society, offer some
contradictory advice. They say that virtually everyone in the U.S.
should be taking vitamin D supplements, but that only those at risk for vitamin D deficiency should have their vitamin D blood levels checked.
Only those whose serum 25(OH)D blood levels are above 30 ng/mL
are getting enough vitamin D. Lower levels are "insufficient," and those
with levels below 20 ng/mL are frankly deficient.
But much higher levels are better, says guideline committee
chairman Michael F. Holick, MD, PhD, director of the vitamin D skin and
bone research lab at Boston University.
"The committee decided that 30 ng/mL is the minimum level, and
recommended 40 to 60 ng/mL for both children and adults," Holick said at
an online news conference.
We
are all waiting for the 900 or so randomized controlled trials that
scientists are conducting using vitamin D. This morning, researchers
working at Tufts Medical Center in Boston, under the direction of
Professor Anastassios Pittas, published just such a randomized
controlled trial in the American Journal of Clinical Nutrition.
Their
research group reported that 2,000 IU/day of vitamin D, given for 12
weeks, significantly improved pancreatic function in mildly overweight
adults with pre-diabetes. Unfortunately, the lead author, Dr. Joanna
Mitri, did not comment on the low dose of vitamin D they used, 2,000
IU/day, which only increased vitamin D levels from 24 to 30 ng/ml. Nor,
in spite of it being a randomized controlled trial, did the authors make
any new clinical recommendations for the people who paid for their
study, the citizens of the United States.
In
spite of the low dose and short length of their study, they found their
principal outcome, a measurement of pancreatic function, increased by
300 in the vitamin D group but fell by 126 in the placebo group. I
cannot link the study to PubMed as it is not yet listed there; it will
be in a few days.
In
the end, they studied 22 volunteers in the vitamin D group and 22 in
the placebo group. However, to give you an idea of what a feat this
study was, how difficult it was to get enough subjects, they started
with 911 subjects yet ended up randomizing only 44 into the vitamin D
study. They did a parallel calcium study with 45 subjects, which found
calcium had no benefit on pancreatic function.
The
same senior author, Professor Anastassios Pittas, recently announced
the results of a much larger epidemiological study that showed for every
5 ng/mL increase in vitamin D levels, the risk of developing diabetes
dropped by 8%. However, he was quick to warn that such epidemiological
studies should not change clinical recommendations, only randomized
controlled trials can do that. Then, when he oversees just such a
randomized trial, not a word of clinical advice, only the ever-present
request for more research money from the citizens of this country.
Of
course the Food and Nutrition Board will say they never said levels
greater than 20 ng/ml had no added benefits, only that no good evidence
existed for such a benefit at the time they issued their report.
Actually, if you exclude the science of epidemiology, that is still a
false statement. The point is that history will record that someone was
wrong. Maybe it will be me and the Vitamin D Council’s recommendation,
going into its fifth year, that adults should take at least 5,000 IU per
day. Or maybe it will be Professor A.
Catharine Ross, of Pennsylvania State University, the chairwoman of the
recent FNB that concluded 600 IU/day is the Recommended Daily
Allowance, all adults need. Looking at the study published today, it is
clear that 600 IU/day would not have resulted in a significant
improvement in pancreatic function.
I
predict that after most of the randomized controlled trials are out –
in another ten years – the FNB will meet again and say “whoops,” it
should have been 5,000 IU/day all along. However, by then the premature
death count will be in the millions.
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