help with vit D levels
Comments
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Thanks so much CS. I just picked up my D3 and popped one! I am going to do this once a week for 12 weeks and then get myself tested again. Once the warm weather comes I head to the beach with the kids for the day. I usually don't wear sunblock (I know, I know) because I don't burn. (I do slather my kids in it!) I hope my time on the beach doesn't mess up my numbers too much.
Thanks so much for responding and for your advice.
Linda
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Hi Linda, If you're getting some regular sunshine in the summer, plus taking the high dose D3's, you're almost certain to get topped up to a good level.
Depending on you and your ins co's tolerance for paying for the tests, you might just assume you're good through the summer, and wait to retest until next winter when you've been on a maintenance dose for a while and you're no longer making in your skin. Like in about January-Feb. That way you would know if your daily supplement is really maintaining you, or if you need to change it. But, if you don't mind paying for multiple retests then by all means test in the summer, and then again next winter when you're on a maintenance dose. -
Another good point! I haven't recieved a bill for any of the tests yet, but I bet if I keep asking for them, I will get a bill. Thank you so much!
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Falls, Fractures Linked to High-Dose Vitamin D
BEFORE YOU PANIC from the title of the article ....
The article stated "There is no evidence for adverse effects of more frequent, lower-dose regimens, so daily, weekly, or monthly dosing with vitamin D3 appears to be the best option for clinicians at this time," they concluded.I was interested that there did not seem a correlation to the other elements that Vit D depends on for metabolizing in the body....calcium and magnesium among others. Maybe is was calculated but not stated in the article. So this paragraph is of importance........"Sanders and colleagues said a strength of the study is its randomized, controlled design, with robust ascertainment of falls. On the other hand, they cautioned, the "pragmatic design" -- which provided potential for translation into clinical practice -- was a weakness, since participants were not evaluated at the study center and baseline clinical information may have been missed. In particular, biochemical assessment of all participants was not possible."
The article states "The rationale for the single dose -- 500,000 International Units given orally once a year -- was that it would be clinically easy, would prevent decreases in vitamin D levels in the winter months, and would eliminate the problem of nonadherence, the researchers said."
YIKES! 500,000 IU!!!
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Wow. That's a whole lot of Vitamin D. And how do they deal with the potential toxicity? I guess they were testing it on lab rats? I think I will stick to my daily regimen, thank you.
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Interesting article, but the study was done on women over 70. I'd like to see a study on premenopausal woman. I wonder if the results are the same? Thanks for sharing!
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Blundin2005: Thanks for posting that link. Man, that is a massive dose of vitD!! Whew!! The study appears to be well-done, but I agree w/Makraz, results are specific to the population studied - age 70+ women, who are already at risk of falling. Marianna, they were testing it on real women - obviously that huge a dose, given once, isn't toxic (other than the extra falls)...so the yelling about a few thousand IUs/day seems a little disingenuous, but that's just my reaction. While I appreciate their theory about it being easier to take something 1x/yr, for me, that's probably harder than 1x/day - the latter just becomes routine, whereas the 1x/yr is out of sight, out of mind, and I rarely remember anything at the 1 year mark (like pap tests and mammograms!)
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cs7777-- Yeah, really. What about if you are like me and you accidently take your 1X year dose more than once?!? I have actually done that with my allergy pills on many occasions..... take one in the a.m., start sneezing, and then take another before I realize that I have taken my dose already!!! I have a mind like a sieve sometimes!!
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Hi Ladies,
The study was of geriatric patients under the control of a physician. I guess it's not impossible that someone might take more than the physician provided in the yearly dose, but I think that the controls were stringent for the purpose of the study.
I agree that incremental dosage throughout the year is best along with periodic blood test to monitor the levels.
Mindful too that each of us are unique and one size does not fit all....our metabolism, etc.....this is why it's important to keep a doctor in the loop of what supplements we are taking and how much....and don't forget the blood labs.
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bumping for Jo-5
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Hi Blundin2005, I'm chuckling...Yes I realize that dose was unlikely to be taken more than once because it was controlled by the docs. I was just imagining if the result had been good that it would be one more thing I'd be told to do 1x/yr and I just manage to miss those things pretty regularly. Like my mammograms and pap smears, I'd probably get the dose every 18 mos. to two years! Ok, I'll be better with the mammos now, but paps...I don't know...! Bad me, I think I waited 8 yrs between my last 2 regular physicals. :-/
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Long story short: Got the correct (25-OH-D) testing done last week. My Med-Onc, who drew the blood, referred me to an endocrinologist due to severe low level of D2. HE DID NOT KNOW HOW TO READ THE REPORT CORRECTLY. One line had D2 at <4.0. Next line D3 at 39. Last line (that was total, but did not say total) said Vit. D 25-Hydroxy and had 39 again. Between this thread and Google, I knew I did not need to see a freakin' endocrinologist.
I asked the Med-Onc. to make a simple call to the lab., just to ask about interpretation and whether the third line WAS, in fact, a total. They would not even do that. I called both my local lab and Mayo, where it was sent out to. They confirmed that, yes, the third line was my total, and within normal range. WHAT A COMEDY OF ERRORS! So, I'm going to sun and supplement to get closer to 80. Thanks for all the info. ladies. I'll get my level checked again in six months. Losing confidence in and respect for my Med-Onc unfortunately.
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Elimar, Glad you pursued the point. If you're not supplementing with D2 then that level ought to be near 0, as yours is. Duh! In the future you might use your GP to manage this sort of stuff instead of the oncs - even the great oncs seem to be horribly ignorant of nutritional stuff. Some GPs might be too, but since they're supposed to be more generalists there's some chance they'll be more informed. This was definitely my experience with my GP vs onc & breast surgeon. Just a suggestion...
CS
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I again am vitamin d deficient, level is at 33. We want it at 70, so I'm on the 'rescue' dosage of 50,000ius once a week for 12 weeks, then we retest. I was vitamin d deficient when dx'd with breast cancer, and it's a concern for me along with hyperparathyroidism. I also have high blood calcium, so have to restrict calcium intake. I was taking 2000ius a day of vitamin d and still became deficient again. I would not go to a tanning bed at all, but that's just me, I'm very fair-skinned and burn very easily. I now am having problems also with estradiol levels, and parathyroid levels (which can be affected by the vitamin d deficiency, will retest after the 12 weeks period of rescue vitamin d therapy). I believe SO STRONGLY that we all need to UP our intake of vitamin D, I don't believe what is recommended is true, I believe it should be a higher supplement daily, especially for us NorthEasterners who don't get in the sun. Just my .02
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juli - I am not sure that parathyroid levels are affected by vitamin D deficiency - I think it is the other way round; that is, high parathyroid hormone levels can affect vitamin D. I had raised PTH levels and just recently had a parathyroid adenoma removed. You will be surprised at how many of us there are with bc and hyperparathyroidism.There are some who think there is a definite connection- even possibly a causative factor.Type in 'parathyroid' or 'high calcium levels' to see the posts.
You may like to look at a great site: www.parathyroid.com. The vitamin D question is discussed there and its relationship to parathyroid disease.
Best wishes,
Sam
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Dear elimar,
Don't you just want to bang your head on your keyboard? I know that I would be taking copies of articles to my doctor if she/he was so totally uninformed as to vitamin D3. It appears that the majority of oncs do not have a clue about anything other than the chemo drugs. Oh and some do not even know the side effects of the chemo drugs.
Dear julio212,
Sweetie I hate to be the one to burst your bubble...but...the script is most likely for D2 which is totally worthless. If it is ergocalciferol, it is not D3. Honestly, and if you go back and read the posts from here, and click on the links, you will see that you can safely take 5000 IU's to even 10,000 IUs of D3 daily. 2000 IU's will not get your D levels up. However, you must take Magnesium...320-400 mg with the D3, for your body to absorb the D3. You want your D levels to be in the optimal range which is as close to 100 ng/ml as possible.
Just one of probably hundreds of links on D2.The pharmaceutical companies push for the doctors to prescribe this. Doctors...well...they were never educated on the difference, as all their medical text books are written by the drug companies!
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julio212....I supplemented from oct to Jan and my D3 dropped from 32 to 22. My doc suggested I change to Thorne brand which some of his patients had had better luck with so I did that. Took from 10,000 to 20,000 per day and tried to go out in the sun more and now I am at 61. I am now going to continue with either 10,000 or 15,000 per day and see if I can maintain.
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Vitamin D level was 25-- Took 50,000 per week for 8 weeks of D3. Had D level just checked again and I am now up to 54! The oncologist has now suggested me to take D3 5,000 per day and will recheck D level in 3 months.
Do any of you take Calcium with D3 to help absorb?
Thanks,
Loretta
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Yay precioustime! I take my Ca and D3 simultaneously (well, 500 mg Ca + 4400 IU D3 in am; 500 mg Ca + 400 D3 in the same pill in pm).
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Once again, I have to take issue with the black and white stance some people cling to with regard to D2 versus D3 supplementation.
It's just not that cut and dried.
The experts and researchers disagree on findings and recommendations, and are still working to clarify and quantify optimum dosages, blood levels, and regimens for vitamin D supplementation. More importantly, they admit that they don't have all the answers! So how is it that any one of us here would have The Answer?
For example, Nan linked to an NIH study from 2006 that claims D3 is much better than D2. However, a quick search on NIH comes up with this study from 2008 that shows the opposite!
"Vitamin D2 is as effective as vitamin D3 in maintaining circulating concentrations of 25-hydroxyvitamin D." Source here: http://www.ncbi.nlm.nih.gov/pubmed/18089691
I don't claim to have the answers and, evidently, neither do the researchers yet. So why would anyone here presume to know which supplements are "totally worthless" and even go so far as to claim that they know more than our doctors who "...are never educated on supplements" and take it upon themselves to tell us how much/what kind of vitamin D we should be taking?
The grandiosity of certain posters who keep parroting the same old "Doctors-Are-Idiots-But-I-Know-Everything" just drives me over the edge. We're all doing the best we can to fight this beast and learn all we can about any tool we can possibly use against it. Misinformation, peppered with conspiracy theories, personal agendas, and political motivations, is just not helpful at all.
Discussions of facts and opinions are great, but telling patients to ignore what their doctor tells them and insisting they should do something contrary to their doctor's advice is crossing the line.
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Crossing the line? Whose line? Is this a police state? Are the doctors in charge?
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"Misinformation, peppered with conspiracy theories, personal agendas, and political motivations, is just not helpful at all."
So true! Yet the healthcare field perpetrates that on us regularly.
Grandiose? What's that? French for physician?
I sometimes DO think that doctors are idiots, but only the idiotic ones.
Hey thenewme, I'm just messing with you.
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Hi guys, I'd just like to add a pragmatic view on D2 vs D3. I've read a ton of the original scientific research papers on this, including those that thenewme and others have posted, and indeed the scientific data is mixed as to how well D2 mimics D3. Given that, my pragmatic view is that since my body makes D3 naturally when it has the opportunity (sunshine during summer/fall, no sunscreen, middle of day), since we don't know how well D2 mimics D3, and since D3 is just as cheap and available as D2, then I might as well take D3.
There are also huge ongoing arguments in the medical and nutritional fields as to how much supplementation is enough and safe. I figured out how much I'm willing to take and it's higher than my GP recommended, but I'm comfortable with it because I read a lot of the primary data showing it was safe, and it got me io a healthy level of D3. Hopefully I'm right. I also hope that everyone reading boards like this takes the info people post and checks it with other sources (incl your docs when appropriate) to satisfy yourself. There's some really useful info on BCO but some blatantly incorrect posting as well, so all of us have to be careful.
Just my .02.
CS
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Hey Makraz, four months after chemo i found that i could not get out of bed-slept all day and felt like cr%p! Turns out my Vit D was not there; my thyroid was blown out and i was anemic. I was put on 50000 units per week of Vit d four weeks ago and bumping that with an extra 2000 OTC. i am also ordered to increase Vit-b-12 shots. It is still too early to test on me I am told so i do not know what the levels are but i am just beginning to feel like i am somewhat of a human again. So many things have been affected and it has taken so long to try to "feel normal" not just take a few hikes up the lab scales. And i am busting my butt to try to get vitamins down and eat healthy. it does take a lot of time-blessings and wishing you the best. ((((BIG HUGS))) SV
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Hey precioustime,
I had to bug my oncologist to test my Vit. D level because the ladies on the Northern VA site had a luncheon and all of them were on Vit. D. I was wondering "Why haven't I been tested?" My number came back at 18 and they just put me on the same 50,000 per week for 8 weeks. Also on iron due to being anemic.
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Ang7 - since you're getting things tested, it would be great to check your thyroid function. Often, all these are connected.
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SV so glad to hear you are feeling better! Keep taking that D and those vitamins. I hope you continue to feel better!!
MY DH just had his second test. He tested back in March and his level was 19. He's been taking 5,00 IU's a day and his level is now 34.8. Not great but in the right direction. He never took the RX of D2. I did. My level was 20 and went up to 37. On the third test, after taking 5,000 IU's a day, my level dropped to 35. ANyeay, I find it interesting that his level was raissed the same amount as my and he did NOT take the D2. I am sticking with my D3!! Good luck to all.
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Hey ya'll
I haven't read every post, but I just had my bone density after 2 years on Arimidex. Well, it came back that I have osteopenia. My onc did a vitamin D test and it came back 25.4. I've been taking Calcium w/Vitamin D and 2,000 IU's vitamin D each day since I found out my bone density findings. Onc is calling in a prescription for Vitamin D.....said he wants me to have 50,000 weekly for a month, then 50,000 monthly!! Does that sound right???? It sure sounds like a WHOLE lot of pills to take!!!!! I hurt all the time, so will this help with the pain too?? Just curious. I've never thought much about Vitamin D.
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coonie,
The high dose D is D2. I was on the exact regimen that you are on for over a year. My Vitamin D went from 22 to 29 in that time. This is why I say that D2 is useless. With my doctor's approval I switched to 4000 IU of Vitamin D3 and my levels went up to 54 ng/ml in six months.
Yes, vitamin D2 stays in circulation longer than D3 but it does not raise overall vitamin D levels as quickly as Vitamin D3 in most people.
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Hi Coonie!
Good luck with the D! I was on the same regime and my level went up about 15 points and then dropped 2 points. I now take 50,000 D3 over the counter once a week. I feel like my body is a science experiment! I do think that is standard protocol from the doctors, but I also think if you take the time to read through this thread, you will be better educated then the doctors!
Hope all else is well with you. I bet is getting hot where you are! It's actually 92 and humid here today. YUCK!
Linda
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