help with vit D levels
Comments
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Thanks Nan, I went through my records and I was tested for magnesium. Mine was 1.9 two months ago. Does that mean I am okay without a supplement? My sheet says normal values are 1.4-2.3.
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weety--you should be good with the magnesium. Taking more magnesium than your body needs causes diarrhea (Mild of Magnesia is a magensium-based product!).
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I have my Vitamin D level - it is 18.
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Dear Olivia,
That is very low sweetie. Was the test done before you started on the D2 of 50,000 IU's per week? I have been reading on BC sites for almost 3 years now, and every time a woman gets the D2 it does very little to nothing to raise their D3 levels. Are you taking chemo or rad treatments? That can play havoc with your immune system. As I have written before, to get your levels as close to 100 ng/ml, from all that I read, it takes 1000 IU's of D3 to raise your levels by 10 ng/ml.Which means that you should be taking at least 8000 IU's daily. Did you call your pharmacist to check on the script? I know of only one place that has D3 in a script and that is Austrailia.
edited to add... Weety...check out that 3rd link in my post above, and see if you are taking any of those meds, as they deplete your magnesium level or interfere with absorption. Almost everyone I know takes a supplement of 320-400 mg. Every lab has different "normals", and just like the D3 test, they say 32 ng/ml-100ng/ml is the range, and then tell a person that they are within the "normal range at 32". NOT!!
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an article from Life Extension on magnesium
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Nan-
Yes it was checked before I started taking the weekly script. I have not called the pharmacist. My primary care physician told me yesterday to take D3 daily. She said it is sold over the counter. She also told me to stop taking the script because it is making me sick. So today I called the oncologist and waiting for a phone call from her. Every day, I think I learn more.
Thanks for all your help
Olivia
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Olivia, I'm not sure how it equates.....maybe for each number, it's worth something different....but mine was 21.8.....you beat me, though! Although it's not really a contest, is it ?? ha.
My primary care told me to take the D3, also...but just told me to take 1000...per what I was told on this thread, I've been taking 3000 daily. I"m to get my levels rechecked soon (i think next week - it was to have been six weeks after first check.) Now that the sun has decided to make a reappearance, I'm trying to be outside a little bit, too
!!) When do you get your levels rechecked???? It will be interesting to compare notes on that too.
blessings...
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The oncologist called today and left a message at my home - I wish I had been able to talk to her. But she said, stop taking the Vitamin D until I see her next week. She said we will figure out something but if it is making me sick and has for three weeks, then stop - YEAH! I am glad she listened.
Olivia
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Dear robin,
As I said in an earlier post, to get your levels as close to 100ng/ml, you have to take 1000 IU's for every 10 ng/ml. So, if your levels were 21.8ng/ml, then you need to be taking at least 8000 IU's per day. Don't forget the Magnesium (400 mg), (and from what that Life Extension article states....even more), and the Calcium (1000-1200 mg).
Olivia...just another case of phamaceutical meds (D2), not being what your dear body needs. If you copy some of the articles which have been posted on D3, and show your onc, perhaps she will see that D3 is what the body needs. I am not being facetious, it's just that these oncs and the PCP's truly do not have a clue when it comes to D3, or for that matter any vitamins or supplements. My GYN actually requested that I send her all the info that I had on D3, as they are really pushing it for all their patients, and this is an OB/GYN clinic in the very rural part of PA.
My daughter is going to send me a copy of the study which was recently done at Cleveland Clinic on Vitamin D, and as soon as she does, I will post it. Good luck to you two! Get those levels up to 100 ng/ml!!!
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While this is not the study, it's a good article. Still they do not suggest/recommend what I have read to be what everyone should be taking...that is between 8000 IU's and 10,000 IU's. I just copied a litlle bit of the article, as sooo many get the wrong test. The reason? Doctors are not educated as to the correct test.
http://cchealth.clevelandclinic.org/features/sunshine-vitamin
The ABCs of D
Foods rich in vitamin D are few and far between. The best sources of D when dining are:
- Salmon, tuna and fish liver oils, particularly cod liver oil
- Egg yolk
- Fortified foods, including milk, some yogurts, some ready-to-eat cereals and some calcium-fortified orange juice
Skim or reduced-fat milk may not be the best source. Some manufacturers put vitamin D into the milk before they skim off the excess fat. Bad idea. Vitamin D is fat-soluble, so when the skimmers take out that excess milk fat, they skim off most of the added vitamin D, too.
For supplements, cholecalciferol, or vitamin D3, is the best version. Ask your doctor to check your vitamin D blood levels. Ask for the 25(OH)D3 test rather than the 1,25(OH)2D3 test. The first test is much more likely to give an accurate reading of overall vitamin D levels in the body.
Source: NIH Office of Dietary Supplements
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My primary care physician said to buy D3 not D2 over the counter. She said that is what I should do.
Olivia
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Olivia,
Absolutely D3!!! I buy mine at Walmart, and they have been just fine. You can get the 5000 IU's and there are 100 softgels in a bottle. I forget the price, but they are not expensive at all. The brand is Spring Valley. Anytime you look for Vitamin D, just make sure it is cholecalciferol. Again sweetie...good luck.
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Thanks Nan - I appreciate all the support!!!
Olivia
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Nan, thank you very much for explicitly naming the tests. It seems I had the second test and will now have to get it again with the more accurate levels of stored D3. That makes me mad to have to know every freakin' little thing or else I can't get procedures done properly.
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Ellmar,
I agree with you totally!!! If it weren't for this board I would not know what to ask -- I am so grateful to all my BC sister's. Sorry we are here but glad we are a bright, determined bunch (smile)
Olivia
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This was in an email that my friend was sending to a family member. Just print it out..it may help when talking to your doctors. Dang, I wish some of my family would be as open to reading as what you dear gals are!
Here are some basic guidelines:
-Make sure you are getting the right test. You must test for 25(OH)D, not 1,25(OH)D. They look similar, but 1,25(OH)D is a measure of kidney function, and is not the test you want for measuring vitamin D levels.
-Ideally, your blood level should be around 60-80 ng/ml, as this allows the body to have some vitamin D in reserve, and it duplicates the higher levels found in young, healthy individuals who spend a decent amount of time in a sun-rich environment.
-Begin taking vitamin D at least eight weeks prior to being tested. This will help you customize your dose once you receive your test results. To determine a basic, starting dose, it has been suggested, as per Dr. John Cannell of the Vitamin D Council (7), that you take 1,000 IU per 25 pounds of body weight. A person who weighs 150 pounds, for instance, would take 6,000 IU per day as a starting dose (150/25 = 6. 1,000 x 6 = 6,000). Do this for at least eight weeks, and then test. Perhaps this dose will put you in the ideal range, but there`s no guarantee since we are all so different, and have unique vitamin D receptor genotypes. The idea is to hopefully get somewhere in the ballpark with this method and then tweak your daily dose once the test results come back. If your results are still suboptimal, Dr. Cannell has estimated that each 1,000 IU increase in supplemental vitamin D will generally produce a 10 ng/ml increase in the vitamin D blood level (8). For example, if you have been taking 5,000 IU per day for 8+ weeks, and your results come back at 40 ng/ml, you would want to increase your dose to at least 7,000 IU (2,000 IU = ~20 ng/ml rise in blood level) to achieve a minimum of 60 ng/ml. Again, keep in mind that this is necessarily generalized, and additional blood testing every several months is recommended to further customize the dose appropriate to you. -
Nan,
These guidelines are great. Do you mind if I post them at tnbcfoudation.org also?
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I just got my vitamin D level done and it is 14. They told me to take 1000iu a day and gave me an rx for 50,000iu a week. Did anyone else have a level this low? They want me to get it around 60.
Could it be so simple that these low levels are causing breast cancer? Why isn't everyone being tested?
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Why isn't everyone being tested? Low Vitamin D is linked to breast cancer and also linked to prostate cancer and colon cancer. Why isn't everyone being tested? I think the members of this forum will contribute to an answer by spreading the word that everyone should be tested.
Since we will be educating our friends and family about D, don't forget to tell them about the importance of calcium and magnesium as well. Perhaps our spreading of the word will contribute to the reduction of several types of cancer. Stranger things have happened.
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I had my Vit D tested 3.23.10 & the result was 32. I was shocked as I have been taking 6000 IU's since the Lab work-up in Dec. I looked closer & saw the units were pg/mL, normal 18-78. That stated "Vitamin D,1,25". I told my NP I was certain it would have been higher than that as the one I had during Rads Jan 09 was at 40. (don't have copy of lab report to know the units). So on 4.5.10, she ordered another test & this is, I'm sure, the correct one: 25-HYDROXY D3 72 ng/mL. I also shows my 25-HYDROXY D2 at <4.0 ng/mL. It also states 'Optimum levels in the normal population are 25-80', but we know with this bc, we are not in the normal population anymore.
Anyway, if I hadn't spoke up, the latest test would not have been done; in fact, all three D3 tests I've had done were because I asked for them. I told the NP bc patients should have a much higher level of D3 than the normal population. That is when she ordered the different test for me.
Then I get on here tonight & read your post, Nan, & see that the D, 1,25 test was wrong to begin with. I just did not think that was right. Thank you for that information. I agree, I do not think the right test is being done in all cases.
I pay $5 for the Wal-Mart 5000 IU, 100 ct softgels & I think it's $6 for a double pack of 1000 IU, 100 ct each.
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I started taking 1000 per day three months ago and got my first results yesterday. I am at 48 so I'll bump that up to 2000 or maybe 3000 until my next test in three months. At least my onc was aware that Vit D has a link to cancer but I had to request the test. I told her that this was not an ok level and that I was aiming for higher. I'm taking 1200 calcium but guess I should also look into the mag. She is being very patient with me since I stopped Femara after just 16 days and have so far refused Tamox. We don't agree as to why I still have muscle pains. I have to be my own advocate. I also had my 1 year mammo today and it was only a bit uncomfortable and the tech was very nice. Now just waiting for the result.
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When you think of Vit. D being linked to B/C, that is not the same as it being a causal factor. That may be the case, but more research will have to be done to prove a cause and effect relationship.
In other words, it may mean that low Vit. D does indeed cause cancer to flourish; OR it may mean that B/C, once we get it, has some mechanism to deplete the Vit. D in our systems; OR it may mean that a third condition present in our bodies effects both our Vit. D levels and also allows the cancer to grow.
That said, it sure can't hurt to supplement to get into the desired range for Vit. D while we wait to find out exactly what the link is.
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I am taking D3 5000 IU daily....
Started that after treatment......had levels checked and it was 27.1
Doctor put me on 50,000 IU twice a week for four weeks....
Went back after that regimen to RE CHECK....
Well the result was 27.1....REALLY.....it did NOT BUDGE......
Now I am BACK on 50,000 IU 2 times a week for 4 weeks.....
Then I RE CHECK AGAIN.....
I have been gardening.....that is the FIRST in all my 37 years of life.....
Hopefully being out there in the SUN will get me some D.....
Hopefully will NOT get SKIN CANCER....go figure.....
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elimar: thank you for your post. I agree with you that it is important to stress that there is a correlation between Vitamin D and breast cancer and that is not the same thing as a causal factor. I think until more studies are done, it is wise to be cautious. Supplementing with reasonable amounts of Vit D would seem to be OK, but taking massive amounts in the hope that it's going to cure us is not. We don't so far know what the upper safe level is. We do know that high levels of Vitamin D can lead to hypercalcemia.
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Dear Donna, Of course you can post it, but I know I posted the exact wording many times on TNBC, on the talk forum and in the resources forum, and unless a person is open to alternative and complimentary ways, they will just keep listening to the "uninformed doctors". Just think about how many women choosing to take chemo/rads, that could finish treatments without the lasting effects if they decided to take matters in to their own hands. It just makes me crazy when I read that they "are afraid to take vitamins/supplements, or eat certain foods, as it "may" alter the effects of chemo", but are not afraid to put the poison in their bodies, and have their bodies burned inside and out by rads. Chemo is designed to kill the bad cells and just stops short of actually killing the person...or does it?
Shadow..it is apparent that your doctor does not know that the script for D is totally worthless, and is D2 and not D3. Once again, to get your levels to 100ng/ml, (for optimal health), and if you read what the vitamin D council is saying, you should be taking 10,000 IU's every day. On the TNBC site a gal had a reading of -4ng/ml...that is minus!! When you have some time, please go back on the pages of this thread and read all the articles.Notself is right..don't forget the Calcium and Magnesium, as they all work together.
Valjean...doesn't it drive you bonkers to know that you have to educate your doctors? The entire population of the world should strive for D3 level readings of 100 ng/ml.Many articles have stated that a person's D3 levels at the time of a cancer dx, actually determines their prognosis. Pretty damn scary..right?? Oh and Valjean, you get a copy of all of your tests, as that is your right, and is a baseline for every test in the future.
SoCalSue...please read the articles sweetie..take at least 5000 IU's...get to 100 ng/ml. Yes you must take Magnesium for your body to absorb the D3 and from what I have read the 1200 mg of Calcium is right on the money. Although...vitamin K2 is even better than the calcium. I have posted articles on that also. Good for you on refusing the Tamoxifen. Read the thread on that. If you haven't read the book by Dr. John Lee.."What your doctor may (not) tell you about breast cancer", please get it!! You will look at mammograms and Tamoxifen in a whole new way. He just reinforced what I have been saying for years. Women need to start refusing the mammograms...squashing/smashing their breasts, damaging tissue, causing bc. When they start to bring the machine down, just say it hurts..(before it actually does hurt), and then they will have to do an ultrasound. It works...my daughter(s) do that.
Elimar...your post was right on target!! D3 is a prohormone/prehormone, and...if all of your hormones are not balanced, it is written in many articles that D3 cannot be absorbed. So, it brings up the question in my mind as to why the doctors are not testing for hormones on a regular basis. Oh that's right...they are not trained in that field!
Angelsabove...the script is worthless, absolutely worthless. Show the articles on this thread to you doctor...educate him/her!! You are not going to get skin cancer! Oh, and if you are using sunscreen...stop! They have harmful chemicals in all of them, and what you put on your skin is absorbed by your body. Just don't stay out in the hot sun for extended periods of time.
MaryNY...from the vitamin D council...you would have to take about 400,00 IU's a day for a very extended period of time to produce any side effects, and the testing is a way to determine the levels. That is if the doctor actually knows what to test for.My daughter (dx with TNBC), had a mastectomy, chemo and rads...was "slashed, poisoned and burned"...(Dr. Love's wording)...and as she says, if she could do that, vitamins/supplements absolutely will not hurt her. She is also on BHRT. She has said many times that if the C comes back, she will never ever take chemo or rads again. For as she said, if it didn't get it the first time, it sure as hell won't get it the second time.
My best friend had a double mastectomy on March 3, 2009, (found the lump in January 2009), dx with TNBC. She had no further treatments. She saw what chemo did to both of her parents, 2 aunts, the one aunts 12 year old daughter, and many friends. She cared for all of them and they all died, and she knows it was from the treatments, and she vowed to never "put that poison in her body". 13 months later...she is doing very well, and her D3 levels are 70. That was with taking 10,000 Iu's a day, and now she is taking 15,000 IU's. She has chosen the all natural treatment. Mary, I am not here to argue with you. I am on your side!! We have 5 daughters, and I do not want anyone of them to go through what their sister went through. I don't want anyone to be dx with cancer.
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Angelabove,
The script for D2 is worthless. When I was first tested my onc gave me a script for 50,000iu D2 also. I learned from the TNBC site we should be getting D3, not D2 (thanks Nancy!). I never took the D2 script. Instead bought D3 and my levels have been going up ever since. You can get D3 pretty cheap at Wal Mart, Sam's Club and Costco.
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Thanks to all my sisters....I do take D3... I take 5000 iu daily....
It is called liquid sunshine......it is of course liquid....I got it at Iherb.com....Do u guys think that is OK????
I took 10,000 iu this morning.......Which was TWO DOSES......
Yes I will bring this to the attention of my Doctor.....MAN JUST THINK WE DONT EVEN HAVE A MEDICAL DEGREE....................
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The world has changed due to the Internet. The relationship between patient and doctors is one of the most serious and liberating changes. We are still catching up with those changes.
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Nan: we'll have to agree to differ on this topic. I think the use of supplements should be complementary to traditional cancer treatments, not an alternative. I do not subscribe to the theory that mammograms cause cancer, as I've read elsewhere on this site. Nor do I see chemotherapy and radiation as the killers that you do. I realize there are risks to both but one has to weigh those risks against their proven benefits. I think they are necessary tools in the fight against cancer.
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Okay I found the D3 but could not remember the magnesium and calcium. I read the magnesium site and understand the correlation but calcium too??
Olivia
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