Vitamin D Takers?

Anonymous

CancerStinks, you may not find many MO's, PCP's, etc. who really know, or seem to care. about supplements.   Many of the threads on here will give you much more information and it's where the alternative and complementary threads are really helpful. (I'm not an 'alternative' type person in general but do recognize the wealth of helpful information shared on them)

lee7 responded about the gelcaps, they are contraindicat for ER+ because of the soy (also inconclusive but many of us prefer to err cautiously).

Anonymous

lee7, that's good that your levels are staying steady.  I get blood work every 6 months and always ask them to test the Vit D3.  Kinda goes with my other thought that the MO's don't really give it much credence or they would make it a routine part of the order.

pejkug3

The NOW brand of 5000IU D3 is soy-free.

LuvRVing

I take 3000 ius a day and that keeps me around 60.  I get tested when my MO does the rest of my labwork.

glasslady062011

I have been taking Anastrozle (generic of Arimedix) since August, 2011. My gyn doctor recommended that I take 1200 of Calcium with Vitamin D each day to reduce the risk of bone loss. I was already getting a bone scan every 2 years anyway, so I was due for one this year.  I had one done last week, so I am waiting for the results. 

I am blessed that I have a family practioner who does not look down on alternative medications/supplements.  I have found that each individual has to find what works for them no matter even though some practioner(s) (out of the plethra of practioners we have when having cancer) may not agree.  My preference is natural products as much as possible.

Kadia

I've had difficulty keeping my D levels in the optimal range. I have had two rounds of high-dose Vit D (I think around 50,000 IU), but even then the levels weren't good. Apparently, some people (like me, I guess) don't absorb it readily. I now take about 2000-2500 IU daily and do try to get a bit of sun without sunscreen most days (although I am careful about that due to skin cancer concerns).

Moderators

The article titled Low Vitamin D Levels, on the main Breastcancer.org site, talks about recommended serum levels, doses and sources of Vitamin D.

.

riley702

I had to ask my onc to test my Vitamin D level after reading here that there seems to be a correlation between BC and very low Vitamin D levels (it doesn't always hold true, and when it does, I'm not sure what current thinking is regarding which comes first; whether low Vitamin D levels can somehow allow BC to get a toe-hold in your body, or whether BC caused the low Vitamin D levels). I got the impression my onc. was humoring me, but when my level came back 12, he got interested in a hurry!

Unfortunately, he doesn't think there's any difference between D2 and D3 and I went through several 8 week doses of the 50,000 iu's of D2 that would get my level up to the low 20s. About that time, I read here to take D3 and just bought some at Wal-Mart and started to take 1,000 iu's/day. That got me into the 30s and my doc was happy, but I'd been reading that 50-80 was better, so I've been adjusting my dosage based on my every 3 month lab results. I'm now taking 2,000 iu's of D3/day and my levels are in the 60s. I didn't even bother to tell him what caused the difference - I just take care of it myself. I think that's safe because my levels are tested every 3 months and I've been cautious when tweaking my dose.

Dang, that was a lot of numbers to type!

ETA: Thanks, Moderators! And to clarify, by "read here", I meant here in the forums, not the info topics on the main site.

CancerStinks

Thanks to all re: the fact that the gelcaps have soy bean oil:  lesson relearned:  Read ALL labels.  Back to the store for the liquid. 

Leia

My latest Vitamin D3 level is 85. Most of the US populaton is low. When I had my breast cancer, I asked them to test the level and it was 18. And they said that was "normal."

Yeah, "normal" for all of the sick people in the Medical Industrial Complex.  My 2cm breast cancer was in 2006, it was cut out, no chemo, radiation or Tamoxifen/AI 6 years later, no recurrence. 

I am a Budwig person, also, I'm on the FOCC. And I feel fantastically well. Yet, also on the D3.  

But this thread is about D3. I would say, supplement with at least 5000 IUs/day. And then, get tested. I use a home test, from an accredited lab, $45.  And as a breast cancer survivor get your level above 80.

For most everyone, the single thing that we can do to avoid sickness/cancer and just have a healthy life is to increase our D3 level. We are in the "modern age," but our bodies are back in the "getting sunshine" age, where we got all of the sunshine/D we needed. By now, with the "sunscreen" idiocy, we are literally just killing, ourselves.  By depriving ourselves, of D3.

I'm choosing the D3. And the FOCC.

I am choosing life, And I have never felt better.  

MariannaLaFrance

I supplement with Vitamin D drops, usually 2000-4000 IU daily, except that last summer I slacked off and experienced a major drop by September. It was a surprise, considering that I was actually tan from going to the pool with kids, cycling, and running. 

D3 is the one you would probably rather take. It's the clear winner when it comes to raising levels. Most endocrinologists will subscribe D2, because that is the only one in their arsenal of treatments. If levels are low, you might consider just going to a good vitamin store and purchasing D3 in an oil base for best absorption. 

SoCalLisa

this link is an excellent program by Univ. of Cal. at San Diego about vitamin d

this is worth watching

    http://www.ucsd.tv/search-details.aspx?showID=15767

dunesleeper

I take 8000 IU of vitamin D3 daily, per my naturo doc, and I get my blood level checked every 3 months. Vitamin D3 is a great anti-cancer vitamin. We have all become so afraid of being in the sun, where we could produce it naturally. Instead, if we do go out in the sun, we wear carcinogenic sunscreen. Of course, burning is not recommended either (unless you are talking about radiation and then they are soooooo happy to burn you). The RDA for Vitamin D is way low. I also take krill oil and other essential fatty acids.

Anonymous

I just started another thread - my vitamin D level DROPPED from 35 to 26 - while taking 6,000ius D3 a day.  Just can't figure it out.  Seems impossible? 

Has anyone has their vitamin d blood level drop while taking SO much Viatmin D3???

Rachel1

Yes, I also take tamoxifen.

Rachel 

Anonymous

Rachel

I take Arimidex - but it shouldn't effect vitamin d levels in blood test.  What did your doctor say when your levles dropped?  I'm really concerned - as mine at 26 is REALLY LOW.  Especially given how much vitamin d3 I take every day.

Leia

I am taking 10,000 IU/day and my D3 level is 85. 

I am also on the Budwig FOCC.

I feel fantastic. And after my 2cm IDC, May 2006, cut out with wide margins with no other treatments, no recurrence. 6 years later. 

That is no radiation, no Tamoxifen/AI. Certainly, no chemo.

I don't come here, often. Because when I do, it just depresses me. To witness all of you women, over-treating yourselves. Even on this alternative board. 

In my view, the bottom line with cancer; Our bodies are designed to live; that is all that they do. But we have to help our bodies do that, by feeding our bodies with the corrrect nutrients. If we don't do that, they fail.

Proper nutrition CAN cure cancer. Eating processed foods will just kill us. And that is all that we have, these days, is processed foods. Just look around your supermarket.

So, there you go.  

Anonymous

Leia, you are very fortunate to have had a small low grade tumor.  I don't agree with your judgement about women overtreating themselves when they are asking questions about how to increase their vitamin D levels.  This is a thread about Vitamin D.

There are many reasons it may be low.  Seems important for all of us to learn how to keep it high. I'm learning that it may indicate a problem with the parathyroid glands.

wenweb

Leia Perhaps if coming onto these boards depresses you then you should stay away.  Negitivity is like processed food.

Anonymous

Hi, webweb, thanks for reminding me why I stopped eating ALL processed food  Also  gluten free, sugar free, dairy free, and give thanks for living directly across the street from the most wonderful  ORGANIC farm.  Anti Cancer: A New Way of Life by David Seran-Shreiber is one of my favorite books.

I'm deeply concerned at how my Vitamin D levels have dropped, and really hoping it IS a small problem with a parathyroid gland.  Will have more blood tests to find out tomorrow.

Just wanted to mention - I take my Vitamin D3 in BRAN OIL.  For those who are E+, it might be a good idea to find one NOT in soy oil.

wenweb

You are welcome Sunflowers .  Do you know if your thyroid levels are normal, does that also apply to the parathyroid?  I just had blood work which showed normal thyroid levels.  My vitamin D was 30 which according to the range from the lab it was sent to is the very lowest of the bottom range.  I know I mentioned this in an earlier post, and I still haven't run it by my onc.  I think it's because he's going to say not to worry about it.  I'm not comfortable taking mega amounts without the advise of at least one of my docs.  I've gone meat, dairy and sugar free.  Gettting most of my protein from gluten and beans.

Please keep us posted on your blood tests. 

mom2twins34

Helpful thread, girls...  I was coming here to start a thread with a D question, but I'm happy I can just join in here...

I was tested at diagnosis 2 years ago and just again for the first time since.  Oncologist called, alarmed, and said my number was "less than 4".  I don't know much about vitamin D, but that seems incredibly low to me...  Especially since I've been taking a D3 supplement for a while.  She said to continue that and also prescribed 50,000 units of D2 twice a week.  She said we'd give it a bit of time to see if it raised my number, but was concerned that it even got this low.  Since I just had a hysterectomy/ooph, she said this isn't our top priority, that we'll deal with it once I've healed, but I have to admit that it's on my mind since D & recurrence & survival rates seem to be in the news so often.  And especially because of the ooph, I'm worried about more bone loss & I understand D plays an important role in calcium absorption(?).

Sunflowers, sorry to hear about your big drop, too.  Good luck with your tests tomorrow...  I hope you get some answers soon!  Please let us know how it goes... 

Best wishes to all... 

gutsy

Leia,

Proper nutrition can cure cancer? There is certainly a role for good nutrition, but to say that it can cure cancer is very misleading if not an ignorant statement. Women don't over-treat themselves, they make informed decisions with the help of their care team. As you will know there are so many different types of breast cancer, grades and stages. It is like comparing apples and oranges. If I had followed your regime, I would be dead.

Anonymous

wenweb - the parathyroid is completely separate from, different function, there are 4 of them, and they just "sit" next to the Thyroid.  BUT, I am hypothyroid, and take the generic synthroid.

Lesson for ANYONE who is extremely tired - HAVE DOC TEST FOR TSH. Thyroid Stimulating Hormone.  American Society of Endocrinologists want it to be BELOW 2.5    MANY labs still use the "old" standard allowing it to go up to 6.

IF it is above 2.5, it means your pituatary gland is having to work TOO HARD to get your thryoid to secrete the hormone it has to.

I know all this, cuz a doctor kept giving me a hard time, wouldn't give me meds, when mine was testing at 5.9   YEA, you are correct - dumped that doc.

Thanks wenweb for thinking of it - no answer, yet, having parathyroid tested tomorrow, and retesting the D level.  THE GOOD NEWS, I just got an email from my docs at Dana Farber saying they don't think it has anything to do with bc.  Darn, I wish everyone could have such wonderful caring docs.  I was SO WORRIED....now, it might "only" be messed up calcium, kidneys, or something "little" like that!!!!!  Isn't perspective wonderful, after bc.

 VITAMIN D LEVELS -  the GOOD DOCS want it up at least to 50.  30 is just outdated.   Which is why I am so befuddled I was trying to get mine UP from 35, taking 7,000ius a day, and it drops to 26.

Will let you all know what I learn.  THANKS AGAIN, wenweb ...where in MA are you?

Anonymous

Gutsy - it's not an argument I'm willing to spend a second on.  We are all wise enough to do the best we can, making choices that are best for each of us as individuals.  I AGREE WITH YOU 100%

dunesleeper

I think it is important to use the same lab when comparing blood levels. I heard that somewhere, maybe one of my docs. To those of you who had their level drop, could it have been the lab? Those were some dramatic drops. I don't get tested until July. Sure wish it was sooner. I'd like the feedback.

Anyway, I got good news Monday. I'm NED, at least as far as the bone scan and PET scans go. The onc ordered bloodwork for tumor marker? Whatever it is the number is supposed to be less than 30, so I'm hoping for a very low number.

Live long and prosper. LOL. NO idea why I said that.

Anonymous

Thanks for the suggestion, dunesleeper - sadly in my case it's the same lab.   FANTASTIC news that you and NED are in a good relationship!!!  I hope you are together forever, and then a little bit longer than that!

CancerStinks

SunflowersMA:  re: your Vit D level drop while taking supps.  That does seem so bizarre and my gut feeling is that it is something "simple" . (My gut has no scientific education but I have learned that when I don't pay attention to that gut feeling, I end up "learning" to yet again!t) Have you changed anything, I mean anything in your diet:  gone vegetarian or cut out dairy products? Read the supp bottle and maybe the manufacturer is getting the supps from a different place, or has added an ingredient or deleted one. Or did you change brands?  Did you change milk brands or discover you enjoyed small glass of whatever before bed each night? (I'm stretching here to demonstrate i mean any little thing that is different.) Did you start drinking a new herbal tea every now and then at the office? I'm trying tio think of anything you might be injesting that could counteract the Vit D supps you have been taking and doing well with. I don't think any topical change would be able to make that much of a dramatic difference.  But you might look at changes in personal care products too.  I really hope it is something like this and not your thyroid.  Sending you pleasant thoughts!

CancerStinks

Mom2twins34:  wow: so sorry to hear about your Vit D level and that you are back in the trenches with this demon Cancer again.  I think if my level gets that low, despite my fair-skin, I would try to get some Vit D the old fashioned way:  hang out outside with my blinding-white skin exposed to the morning rays before I put on any sunscreen products for the day.  I think the recommened dose of God-given Vit D is 15 minutes a day and I could certainly give myself that 15 minute gift of watering the plants or playing with the dogs before I start the routine of life. But I'm not the mom of twins who probably needs that 15 minutes for sleep!  (you remember sleep, right? I can hear you sighing all the way in Texas.) Of course I'd keep taking the supps, but might look for a different brand. Right now I'm taking a VitD3 vegetarian brand (not a gel cap which has soy: I learned that from this list not my Doc! but a pill.)  I'm thinking about you. 

CancerStinks

Hi Everyone and especially Leia:    

I was struck by Leia's post too, but was happy to see SunFlower's tactful post in response:  success stories are always something to celebrate, but each of us is on our own journey with our own particular circumstances. Noone likes to be told we are living our lives "wrong"; especially when we are doing everything we can to educate ourselves in an area where noone, not a single person, not the people who have devoted their lives to study this monster, not those of us who have the disease, noone on the face of this earth knows what the cure is.  Something works for me and I want to shout it at the top of my lungs: I want to"fix" everyone and spare them what I've been through:  Check your Vit D levels!  Mine was low and I got Cancer! Learn from my experience! Then I hear myself and think: how dare I?  Each of us is hurting and each of us is searching; and each of us has succeses and disappointments; yet we continue to search and to ask questions and continue to try to help others as we choose for ourself and make the best decisons for us and our families.

And now I'm getting preachy so I'll stop. One more request: please read this post for the message of "we all want the same thing" rather than my lack of eloquence at expressing that goal. (and yes, I had to wait two days before I wrote this post so if I'd waited a week, maybe I would have gotten the wording "right."!)

That said;  I do agree with Leia that nutition has alot to do with our health status.  A cure?  Well, probably not a cure, but definitley "something". For instance: on another forum I am trying to find a natural way to do what tamoxifen will do for me "chemically".  And I do think that logically (I'm not a scientist and don't play one on breast cancer web sites either:  full-disclosure!) something I injest should be able to mimic the same results.  I think that is why we have the alternative medicine forum:  because we are all thinking there has got to a natural way.  Let's all keep on our journeys and help each other.  I've learned a lot from these post!  many thanks to all for taking the time to write