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Vitamin D dosage ?

peterz54's picture
peterz54
Posts: 228
Joined: Feb 2012

whie consulting a second oncologist and going over my wifes diet and supplements the doctor indicated that the 2000 IU of Vitamin D per day my wife takes is too high. the conversation took a turn and I failed to follow-up. I couldn't find anything on the NIH web site in terms of research to suggest that 2,000 IU of vitamin D is excessive for a stage IV CRC patient. I did find research suggesting that higher doses might be beneficial.

Does anyone here know of a concrete reason why 2,000 IU is too much?

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

Vitamins A, D, E and K are stored in body fat, and not water soluble like Vitamin C and the Bs.
Maybe she's hit her limit?
Good luck in your research~
Tommycat

dmj101's picture
dmj101
Posts: 521
Joined: Nov 2011

I take 50000 once a week it an Rx...
never been told too much

tanstaafl's picture
tanstaafl
Posts: 945
Joined: Oct 2010

Peter, if he doesn't have your wife's vitamin D blood data in hand when he said that, I have my doubts the guy has any idea what he is talking about, perhaps still just working from misinformed tapes of 20th century vintage. *Many or most* advanced colorectal patients are vitamin D deficient or suboptimal without substantial vitamin D3 supplementation, like 4,000-15,000 iu per day.

My wife's vitamin D lab results while on chemo show that over 12,000 iu per day were necessary to achieve blood levels with minimal sufficiency set at 32ng/mL. With several precautions, including two doctors input and careful nutrient balances on minerals and fat soluble vitamins, my wife has run for many months straight in the 30,000-40,000+ iu per day range [note to any and all: DON'T do this by yourself! ] far above the 100 ng/mL "barrier".

Anyone taking over 10,000 iu per day without professional, knowledgeable monitoring of their blood labs, including kidney panel, calcium and/or vitamin D levels, is likely taking unnecessary risks.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

sfa sweet f all.

i started at 2000ui and supplemented

tested low

went to 5000 ui daily

tested low

went to 10000ui daily eventually

tested at optimum levels.

i won't say what mine are the upper goal is controversial as all supplement issues are.

if you spend you day nude in the sun, have plenty of cholestrol and all the cofactors to make your own vit d, as well as a healthy liver free from all the cytochrome p450 disabling drugs and chemical that stop vit d being made then you can do with less.

but getting your blood levels is the only place to start, it shows how crude the onc approachs are.

what about individual measures to know whats precisley good for you, for me , for your wife. this type of medicine is hard work and takes commitment and a long term health strategy that goes beyond a chemo cycle. just rambling, but i was taught about vit d here on this board by our dear lisa, i miss her.

so i have noticed i need less vit d these in a supplement around 5000 iu daily, now my health has improved.

hugs,
pete

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

I take 10,000 units daily and have for over a year. Even at that, i still have a hard time staying above 50,000 which is at least where I want to be...,for my body..,,,which is key....to know what your body best responds to,,,,thus the expert testing tans talking bout.

Jennie

peterz54's picture
peterz54
Posts: 228
Joined: Feb 2012

Not requesting a blood test of D was an oversight on my part - I assumed 2,000 IU would be fine based on one study which indicated a 13 ng/ml increase for every 1,000 IU. but that is only an average and each person is different. Plus I found a study which indicated chemo will drive D down - all the more reason to supplement.

we will take this up with Onc on Tuesday during visit and request test as well.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

buy a years vit 3 for about $6

tans or any other vit d gurus, what do think about this special.

just saw it on iherb. grab 4 myself.

who said supplements had to be expensive.

http://www.iherb.com/Healthy-Origins-Vitamin-D3-Drops-5-000-IU-68-fl-oz-377-Servings/40027

not recommending it at all, curious about any opinions of this products value for money.

after all we measure the resultant in our bloods, so if it don't work i will know.

but a i love a bargain!!!!!!!!!!!!!

Yep $6.99 for 377 serving, over a years worth, about 2c a day, and someone years ago said it would offer a 75% reduction in recurrance risk. that maybe optimistic.

but just to make this offer look better, you got to checkout this email from lef.

if the lady in your life is a bit down, then vit d may also help.

http://www.lef.org/news/LefDailyNews.htm?NewsID=14031&Section=Vitamins&utm_source=DailyHealthBulletin&utm_medium=email&utm_term=Vitamins&utm_content=Body+ContinueReading&utm_campaign=DHB_120707

hugs,
pete

tanstaafl's picture
tanstaafl
Posts: 945
Joined: Oct 2010

You might want to check the old prices [inflation and markup?] in this health circular, Low vitamin D in Victoria...December 2009 [Victoria, Australia] for current price and availability:

"Table 2: Available oral vitamin D formulations (at June 2008)
....Formulation....................Strength..........Cost....
RCH Vitamin D3 in olive oil 100,000 IU/ml $13/200 ml" [Pete, is this a prescription item in Oz?]

10,000 iu/day ~ 3 mL per month (assuming 1 drop = 1/20 mL)
This is about the same strength liquid in a larger bottle. The stuff is so concentrated only diluted and high dose treatments are practical, and long term handling and storage has to be considered for potency/rancidity. It also needs to be "kid proofed" so be extremely careful.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

i will give some to my friends with crc here who are not into supplements as a birthday and or xmass present. i have enough vit d to last the family a year or two. now i just have to last as long as the vit d supply. haha! that was a joke.

what you found looks good, i doubt its a prescription but i could be wrong. i will followit up next year. i just like the convenience of iherb. click click and pay and its done. i get most of the supplements covered by $12 freight. its reliable and it works.

hugs,
pete

ps got some sunbaking today, but i think our genes have a bit to do with how well we make vit d. i am researching that in the context of gcmaf. i got some interesting stuff i am putting together.

abrub's picture
abrub
Posts: 1528
Joined: Mar 2010

under a dr's advice, as anything less than that could not maintain a satisfactory D-level. 2000 iu should be reasonable, but a blood test will tell if she's exceeding her limits.

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

It is very important to be tested for levels of ANY vitamin or mineral before blindly supplementing. Overdoses can cause a lot of issues - especially if you are on chemo.

While most CRC patients are Vitamin D deficient, I was not. Since I wouldn't be spending my usual time in the sun during my winter FOLFOX treatments (multiple trips of multiple weeks to Mexico), I was put on supplements through that winter. I haven't supplemented since then. It takes very little sun exposure for most people to keep up their vitamin D levels in summer months; 15-30 minutes per day is enough for many people. If you live north of the Mason-Dixon line in the USA, it can be an issue in winter months. And it can be a permanent issue for many CRC patients that seem to have a tendency toward Vit D deficiency. I've been tested a few times since the my dx, and I do quite well w/o supplementing. I do get sun without sunscreen on almost every day. If you can spend 15-30 minutes in the sun each day without sunscreen, you may not need supplements at all. And you will get your D much more naturally. But if you have parts of your body not working well, or an extreme sensitivity to sun, you may need supplements. The key is to work with your medical team - be tested and know your levels - and know if you can raise those levels with sun or not. And be prepared to supplement in winter months if you live in an area where it is hard to get sun then.

peterz54's picture
peterz54
Posts: 228
Joined: Feb 2012

about the importance of testing. On hindsight, and considering how many studies I've seen, I am now wondering why Vit D status was not ordered at the outset, along with all other blood parameters. B vitamin status is another example. The Onc my wife and I spoke with last week told us we did the right thing in that my wife took calcium magnesium supplements during chemo to help delay oxaliplatin induced neuropathy. But now that first line chemo is over he said that a B complex is more helpful for nerve regeneration. So why are we learning of this after the fact from the doctors?

As for sun light I also agree with you, but I cannot get my wife out doors. aside from D, I think sun light helps with mood (seratonin) as well and she needs all the help she can get with her depression.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

read the link i put in above from lef, its all about vit d and depression.
yes vit d fixed depression for women.

if you wait for your onc to tell you stuff, well you will only here stuff thats been double blind tested and trialed. useful stuff about diet, exercise and supplements you have to find out for yourself. well at least i did. then i found naturopaths, then i found alternative doctors and now i want to be one myself.

hugs,
pete

peterz54's picture
peterz54
Posts: 228
Joined: Feb 2012

In general I have been very active in searching out evidence based options, which is why my wife was on Vitamin D at 2,000 IU to begin with. It's just this one thing, and I am begining to think the second Onc is just being too conservative. I have helped my wife shift to a predominantly plant based diet and she is taking selective supplements (curcumin, green tea extract, resvertrol, quercetin, muchroom extracts,soy, etc) not as antioxidants, but because they all have evidence to support their ability to curtail some of the signialing pathways involvend in cancer proliferation, which is all the more important for her as she is K-Ras mut.

We had a discussion with my wife's primary Onc on the issue of plant extracts a while back and she is all for them provided there is some level of evidence. She is a big proponet of tumeric (source of curcumin) and mushrooms and a plant based diet in general, but she says that they (the Drs) cannot formally provide patients with recommendations along those lines due to liability and also because the culture within the institution she works does not fullly embrace anything that is not pharmaceutical based. She is open to us because she knows we are open to these other options.

You are correct about LEF. I have been a member for quite a while and will often use information they present as a starting point for further research at the NIH site. At the outset I talked with one of their Doctors who advised me on their suggested protocal and he was able to back it up with research.

peter

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

hi peter,
you have explained it so well.

most of the stuff your wife is doing is like what i am doing, alas i am a mutant as well.

lef was, still is a good reference point, for me they just seemed so credible, i had done all my own research and then i found what they recommended was close to what i was doing. i did not feel so bad going against onc advice when i had a few positive supports backing up my choices. lef was one, and some support here was another.

alas, for both of us, the no test for vit d by your onc and also my onc is such a simple but clearly defined issue in my mind. my onc will not order the vit d test. its outside clinical guidelines, so no can do! so i need my alt gp's to order that test and all the other mineral, vitamin etc. all the functional and intergrative tests.

to be honest i don't believe onc have the skill set and experience in looking at lifestyle medicine including meditation, diet, exercise, genetics, the gut, our bloods and what tests are available in the alternative space that really experienced functional and integrative gp have.

onc's are great at dishing out chemo and handling many aspects of cancer, referring us to good surgeons.

your onc sounds great, i hope your wife's health improves.

its a bit personal but what tumeric did you decide on, and what qercetin. just curious.
http://petertrayhurn.blogspot.com.au/2012/07/my-top-three-curcumoids-maybe-another.html
i put this on my blog the other day if your interested, its hard to workout the best.

when i did my $4000 ctc tumour test quercetin, vit c were top of the list for effectiveness against my tumour. for what its worth you have some well choosen supplements listed. i happy to say i am on them all myself.

hugs,
pete

peterz54's picture
peterz54
Posts: 228
Joined: Feb 2012

with your comment about the skill set...for one, they have a large job just keeping up with research in the more conventional treatment regimes and usually, from what I can see, defer to the their organization's protocals (which might follow NCCM) none of which includes anything other than general information about diet and exercise.

My view is that if multiple studies, which may not meet the most rigoruous trial standards, nevertheless show some efficacy, then one would be foolish to ignore them. That's clearly the case for curcumin.

It is puzzling to me why a web site like this (ACS) does not maintain a living page to provide research links and information about plant based extracts and results of various experiments and trials.

In reviewing many studies though there are some gapping holes...extrapolating from in vitro to in vivo is a very big issue. optimum dosage is a very big issue. even a good supplier of health information and supplements like LE fails in some ways. In trying to unravel how much of a supplement my wife should take to match a study I read it was like pulling teeth to get expected plasma concentrations for a given supplement strength. We badly need data to allow us to correlate supplement strength and plasma concentration as well as biological half life. When I asked them to convert their supplement strength in mg to micomoles plasma concentration they failed and did not give me an answer. I eventually did it myself and sent them the results.

as for your question about tumeric and quercetin...so far i have not been able to make a recipe with tumeric (from a local Indian grocer) that my wife can tolerate even though her Onc made some suggestions, so she is using curcumin pills - the Super Bio-Curcumin from LE..She takes the Optimized Quercetin from LE. In our last diet conversion with our Onc she suggtested making a veggy omelet and folding two teaspoons of tumeric into it. I haven't tried that yet.

peter

thxmiker's picture
thxmiker
Posts: 1201
Joined: Oct 2010

I have spoke to several Oncologists and holistic Mds about Vitamin D. All but one Doc suggested to me to take 3000 to 4000 units Vitamin D twice a day.

Best Always, mike

peterz54's picture
peterz54
Posts: 228
Joined: Feb 2012

Thanks Mike. I am not sure if the issue was taking Vitamin D during Chemo or just taking it in general.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

as chemo is challenging our livers, you might way more vit d while on chemo.

let your bloods be your guide.

even something like aspirin and cimetidine may slow the conversion of vit d, so just keep in the back of your mind what drugs/supplements and even diet. yes you can get vit from diet as well.

again i let my bloods do the talking.

as i am experimenting with gcmaf at present, it needs good vit d levels, see my gcmaf post or search for it yourself. point being vit d is key to so many things.

now the 75% recurrence prevention good vit d levels supposedly confers, i quoted this over a year ago, it did not work for me i suspect, but should help alot if the science is true. at $6 a year can you afford not to do it ?

my vit d levels are pretty stable now.

getting vit d naturally is just relaxing as well.

you can sunabke and meditate, thats killing two birds with one stone. lowering cortisol and building vit d.

hugs,
pete

peterz54's picture
peterz54
Posts: 228
Joined: Feb 2012

I found one study which indicated that chemo suppresses or depletes D. and sunlight has the added benefit of replenishing neurotransmitters (seratonin) which helps with depression and sleep.

thxmiker's picture
thxmiker
Posts: 1201
Joined: Oct 2010

My Onc suggested that I take 3000-4000 units of Vit D twice a day for the rest of my life. (Sorry that I was not concise.)

Vit B and Cinnamon are good for everyone also. They are good for the the Brain Synapse growth and connections. Cultures with High Vit B and Cinnamon in their diet have less depression, and dementia.

These three vitamins, basically can not hurt you, and the science that they are helpful is promising.

Best Always, mike

tanstaafl's picture
tanstaafl
Posts: 945
Joined: Oct 2010

Mike, it would be instructive to hear if the oncologist would agree that testing and establishing a particular blood level is technically superior approach rather than trying to hit a safe/best average input for a particular disease. This general question does not address the actual blood level goal as an issue, whether the goal is merely "greater than 32 ng/mL", 40-60 ng/mL, 60-100 ng/mL, etc.

I see the vitamin D3 issue as a Day #1 workup item, lower down on the list. Freshly diagnosed "civilians" should not have to be working this issue out on *their* precious time.

lesvanb's picture
lesvanb
Posts: 905
Joined: May 2008

and my doc monitors the bloodwork (last Vit D3 blood level in April was 69). Been doing it for 3.5 years now.

Best wishes!
Leslie

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