Vitamin D supplementation

nancyjac

So I've had chemo, surgery, radiation and am now on an AI.  Already had osteopenia before DX so concerned about bone density.  MO did a blood test to measure Vitamin D levels and results were low.  I'm already supplementing with 3800 IU between what is in my calcium and multi-vitamin supplements and MO wants me to add another 1000 IU.  And that doesn't even count any from sunlight (I live in Texas and we have a LOT of sunlight) and fortified foods like milk).  Anybody else taking this much Vitamin D and have you noticed any improvement in bone health as a result?

GottaloveNED

I'm taking 5,000 iu's a day plus 3 " bonus" soft gels each week, for a total of 50,000 a week. My d level went from 23 to 43 in 2 months, and I'd like it to be a little hired her, so I'll add in a few more. Sometimes you have to take a lot because it's not all absorbed. If you search vitamin d on this site, I think there's at least one other thread mentioning brands and effectiveness. I know I've seen it somewhere on here.

nancyjac

Thanks, but a search for vitamin d turns up over 9000 results.  There is no way to limit or refine a search that I have been able to find on this site, so every mention of the letter d turns up in the search so the search function is pretty much useless on this site.

 Did your doctor recommend that much vitamin D?  The upper tolerable level set by NIH is 4000 IU so we are both above that.  

GottaloveNED

Sorry about that.... Didn't think of that



Here's one thread. If I find the one on brands that work I'll post that separately. I don't know how to cut & paste multiples. This one is vitamin D and research



http://community.breastcancer.org/forum/79/topic/741446

nancyjac

Thanks, I really appreciate that.

GottaloveNED

Here's the thread with brands and people list what dose they are taking.



http://community.breastcancer.org/forum/121/topic/785821?page=3#post_2993287



I actually see my primary doc tomorrow and what D dose I need is on the discussion list. The first time they discovered it was low, she put me on 50,000 units a week. After a year, she said to dose down to 20,000 a week, but then I had lots of extra joint pain so I asked to have it tested again and I was considered "low normal" at 23 so I went back to 50,000 and went to 43. My onc. thinks I should try to stay closer to 75 to reduce the joint pain which is a side effect of arimidex, but when you read the boards, everyone's recommendations are all over the place. There's info on the arimedex threads too, but those threads are LONG.

GottaloveNED

Hey Nancy, I saw my primary care dr. today. She told me to go to 10,000 a day and we would see what happens. I have to have blood drawn in 6 weeks anyway, so she thought it would be a good time to see how the supplement level affects my d levels in the blood. She said she was comfortable as long as I stay below 100 (150 being the highest/toxic level to watch out for). She thought trying to raise it another 30 points or so to be in the 70's was appropriate.

nancyjac

Good to know.  I talked to one of my oncology nurses today.  My vitamin D level was 26 and the initial goal is to get it up to at least 40.  She said raising your vit D level is hard and takes quite a while, especially for post menopausal.  After talking to her and you and reading some of the other threads, I am no longer concerned about talking too much vitamin D, if anything it may not be enough.  I have a bone density exam in October and will probably have vit. D levels checked again in November and if I'm not up to 40 something by then, I'll probaby end up on a higher dose.

peggy_j

I met with a bone endocrinologist. (head of the osteoporosis clinic at UCSF). He said that there is no known toxicity taking 3000-4000 IU of Vit D a day (from all sources, including food and sun). He said taking mega-doses, like 10,000 IU a day, is too much. Some supplements, like Vit C, will pass through us if we take more than our bodies need. Some do not and then our bodies have to figure out what to do with the extra. (For example, we are beginning to understand the risks of taking too much calcium, like increased risk of heart attack etc). This doc said Vit D does not pass through us so he cautioned against taking mega-doses. FYI.  Also, not sure if you've read this in your research but many feel that Vit K is also important for bone health. Some people have talked about it here, in case you want to Search for those threads.

He also said that bone changes happen slowly. For most people, there's no benefit in having a DEXA scan more often than once every 2 years since changes happen that slowly. (patients who are at higher risk of bone loss, say taking an AI, may have other considerations).

ETA: If you're interested, you might want to google "Vit D toxicity". I found many hits, including the Mayo Clinic.

http://www.mayoclinic.com/health/vitamin-d-toxicity/AN02008/

Also, there's a research paper that lists other and more serious SEs for huge mega-doses, like 50,000 IUs. I don't know what the magic number is, but FYI that, at a minimum, we know that Vit D is not like Vit C and the excess won't pass through us.  Seems like the role/importance of Vit D is still being understood and there's no clear answer on what is the optimum amount to take. Wish it were easier.

nancyjac

What I have just recently come to understand is that potential toxicity is relative to the current blood level of Vit D, not the intake dosage and that raising and sustaining Vit D levels takes high doses over a long time.  So basically the mega doses are for catching up those of us with low levels to a maintenance baseline which can take years, especially if you are post menopausal.  So in other words, if you currently have a Vit D deficiency, then what our bodies need is much more and require much higher intake doses before we reach that figuring out what to do with the extra part.  We need it to stay in our blood streams and not pass through us.  Once we reach an adequate level, then a lower maintenance level is appropriate.

I've been taking annual bone density scans and there has been a significant difference each year. Just being post menopausal is a higher risk for bone loss, let alone having cancer, osteopenia, or taking AIs.

Lee64

I hope this isn't a silly question, but is the test for vitamin D part of the complete blood count? If so, how is it listed on the results? I asked my Onc if I should be taking vitamin D or calcium supplements and she said to just take a vitamin with both in it. I am on Arimidex and had a bone density test before starting it.

GottaloveNED

I had to ask my doc to add it on so it is an automatic test. In my health system it is not part of the regular blood work-up done by my onc. or primary care doc. My primary care doc had to enter me in their computer system with a diagnosis of vit. D deficiency so that the test reminder will automatically show up for me as a needed test.

nancyjac

No, it is not part of a CBC.  It isn't even part of a Comprehensive Metabolic Panel, although Calcium is.  It is a blood test though, so you can ask your doctor to add it to your next CBC or CMP.

Lee7

Hi all,

I probably posted in the thread that talked about Vit D brands and want to let you know what I found to work for me.  I bought Nature Made brand Vit D3 in white tablet form, not the softgel. (found it at Walmart and it was cheap).  I tried it and it really worked quickly for me.  My level before was below 30, I think 27 after bc dx.   I started by taking 4000 IU a day.  2,000 at breakfast, 2,000 at dinner.  Three months later asked to have my Vit D checked and it was in the 60's.  It went up fast so I backed down to only 2000, at breakfast.  Three months later I checked again and I was still in the low 60's.  I stayed with the 2000 and now six to seven months later I am still in the low 60's.  I figure that's proof for me the Vit D3 I'm taking works for me.  I do live in Fl but stay out of the sun because I'm so fair skin.

I have read some taking really big amounts and their level still doesn't go up much so I don't know  if that's due to the Vit brand itself or other factors.  The NatureMade brand does say USP certified so I think that's suppose to be a good thing. 

Anyways...my experience and I thought I'd throw it out there in case it can help someone else.

GottaloveNED

I'll have to re-read the "brands" thread. I know some of the women there did well with drops. Maybe if I change my delivery method I don't need such a high dose to see progress.

nancyjac

I really don't think the brand matters.  D3 is D3 and if they were different in that regard they couldn't sell it as D3.  What may vary are the inactive ingrediants such as binders, fillers, preservatives, etc.  As for method of delivery, that is more a matter of preference.  I prefer chewables when I can get them.  That some people are able to raise there D levels faster or further than others, has to do with differences in people, not differences in brands or method of delivery.