HealingWell
Search Close Search
☰

Was your Vitamin D level less than sufficient replacement poll

Support Forums
>
Prostate Cancer
Was your Vitamin D level deficient around the time of your PC diagnosis?
Low/intermediate Risk, sufficient, 30-100 ng/ml - 0.0% - 4.2% - 1 votes
Low/intermediate Risk, insufficient 21-29ng/ml - 45.8% - 11 votes
Low/intermediate Risk, deficient, 0-19ng/ml - 12.5% - 3 votes
High Risk, sufficient, 30-100 ng/ml - 4.2% - 1 votes
High Risk, insufficient 21-29 ng/ml - 12.5% - 3 votes
High Risk, deficient 0-20 ng/ml - 20.8% - 5 votes
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 2/5/2016 8:50 PM (GMT -5)
Forget the other poll please. I have 6 slots available, and I want to get 3 categories in: deficient, insufficient and sufficient. So that limits me to 2 categories of PC. One is high risk. I want to change the other category- low risk- to include intermediate, so it will be low/intermediate risk.

Since several guys with low Vitamin D chimed in to say they were low, in a another thread I started about Vitamin D and various types of cancer(started out with a study about cancer in women so no PC but a recent study about PC only was added), I'd like to start a poll. Whenever I have done this in the past, I find it is a challenge to ask the right questions in the limited space available.

Probably someone besides me should do this, some one who better knows how to set a good poll up. And as I have to start somewhere, let's use the Endocrin Societies figures, which are not quite as high as the Vitamin D Council(I have no clue who is correct). So, we will say that 0-20ng is deficient, 21-29 is insufficient, and 30-100 is sufficient(Vitamin D Council 40-80 is sufficient, but we will just use the lower levels since opinions will vary and to be a bit more conservative)

Here are the categories/choices I am thinking of(maybe details can be supplied during comments):
first, for all participants: you were diagnosed with PC.

So, I have low or intermediate risk PC and:
1: I was not taking supplements or much in the sunshine, and my vit D was in what is considered the high range, past sufficient, above 40 ng ml
2:I was tested and it was sufficient, definitely not deficient, but still <40ng
3: My level was insufficient, 21-29ng
4: My level was deficient, 0-20 ng

Or, I have High risk PC and:
1: I was not taking supplements or much in the sunshine, and my vit D was in what is considered the high range, past sufficient, above 40 ng ml
2:I was tested and it was sufficient, definitely not deficient, but still <40ng
3: My level was insufficient, 21-29ng
4: My level was deficient, 0-20 ng

I need one more category: those who were, like me, supplementing and then fit into one of those categories. So in my case, taking 2000 IU for a while and barely reached 30, maybe even was 29 and thus insufficient. But since upping my dose easily got me way up in the top of the sufficient range, then it seems likely that before I was taking 2000 I was either insufficient or even flat out deficient.

Please if no category precisely fits for you, just make your best guess and fill us in with the details in a post.

Post Edited (BillyBob@388) : 2/5/2016 7:00:28 PM (GMT-7)

Posted Yesterday 9:22 AM (GMT -5)
For 2-3 years before being diagnosed my Dr. told me I was vitamin D insufficient (22 ng/ml) and should take 2000 iu. I was curious if there is a correlation.
Posted Yesterday 9:39 AM (GMT -5)
As I said in the other thread that is closed, I was not able even to get in a category that would cover me. My level was not checked before starting supplementation or increasing sunshine.(if I am getting >15 mins a day of southern sunshine, I usually do NOT also supplement, as it is not hard to generate 10,000 units from sun exposure).

I had supplemented for some months with 2000 IU daily when I finally had my levels checked, and I was either 30 or lower than 30, can't remember for sure. I remember I was surprised and disappointed the level was not a bit higher into the "sufficient" area. Increasing the same brand of vitamin D increased my blood level more or less proportionately. So based on that, I am making a reasonable guess that without supplementing, I was deficient most of my life unless I was getting daily sunshine, which would have been mostly during my childhood and youth.

So please if you don't fit in an exact category, just make your best guess and post an explanation. But another problem with this poll will be no category for the guys who never took Vitamin D and who did not get adequate sunshine. Which I bet will be the majority of us. Probably another majority will be those of us who have never yet even had their vitamin D levels checked.

Oh well, no chance of this being anything scientific anyway, it will just be for curiosity about this group here, maybe something interesting. But at least I don't think there will be a selection bias, since my guess is that most men who come to this forum because they have PC or are worried they might, also had NOT been taking vitamin D for years before hand, at least not anymore than the general population. But maybe.

However, it might be that the general population is either deficient or insufficient, and I don't know of a way to control for that. Bottom line, it won't be scientific, obviously.
Posted Yesterday 10:06 AM (GMT -5)
I am only guessing as to my D level at diagnosis (9/2013), since it was never checked back then. However, it was checked 4/2014 and came in at 39. I began taking 8,000 IU and 2/2015 it was 81. I asked my new med onc to add that test to my upcoming blood work this coming Friday (2/12). We shall see what it is now, 17 months after completing IMRT + HDR boost + 12 months ADT.
Posted Yesterday 10:59 AM (GMT -5)

Walt S said...
I am only guessing as to my D level at diagnosis (9/2013), since it was never checked back then. However, it was checked 4/2014 and came in at 39. I began taking 8,000 IU and 2/2015 it was 81. I asked my new med onc to add that test to my upcoming blood work this coming Friday (2/12). We shall see what it is now, 17 months after completing IMRT + HDR boost + 12 months ADT.

Well, I think it is safe to guess, since you had not been supplementing before 4/14 and had a 39, you were probably a sufficient high risk guy, probably sufficient for the months and years prior to diagnosis. Unless you had been getting a lot of sunshine prior to the test, probably not.

I will add that the "sufficient" category, used for this poll, (per Endocrine Society)is anything 30 or over(like your 39). But by the Vitamin D council it is 40 ng/ml or over. So, depends on who you ask. I arbitrarily decided to use the lower numbers of the Endocrine Society for this poll. (toxic I think was over 150, or again over 100, again according to who you ask)
Posted Yesterday 11:18 AM (GMT -5)
I voted low intermediate, insufficient. However I don't remember my original D number. But for sure it wasn't close to zero
Posted Yesterday 12:32 PM (GMT -5)
As far as I know, I've never been tested for vitamin D.
Posted Yesterday 12:58 PM (GMT -5)

halbert said...
As far as I know, I've never been tested for vitamin D.

I bet that is most of us.

Let me add another caution. The levels in the categories for this poll are based on ng/ml. If you have been tested, but your results were in nmol/l, you will need to divide by 2.5 to get to ng/ml and see where you belong on the sufficiency scale. So, if you were a impressive looking 60 nmol/l, you would be 24 ng/nl, insufficient.
Posted Yesterday 1:25 PM (GMT -5)
My hubby was low in Vit D and intermediate risk. Both of his brothers, (one older, one younger) have outdoor jobs and are as of yet, not stricken with PC. His father, who also had an outside job, died of PC cancer at the age of 86. He had a turp procedure in his sixties. Just some trivia, don't know if it matters for what you are trying to extrapolate.
Posted Yesterday 3:29 PM (GMT -5)
My husband's Vit D level was a very low 18 when he was first diagnosed as a high risk G9. I had him start taking 8000 mg of Vit D per day soon after. Six months later his Vit D tested at 55.

My gut feeling is that this is the most important supplement he can take. BTW, we have always had to request the Vit D tests ourselves. They have never been ordered by the doctor.
Posted Today 5:09 AM (GMT -5)
Before a reason to ask, D level tests are protested or not paid by insurance, so I think few have pre - PCa numbers. Mine are average.

My current numbers are in line when boosted with 1 IU per day. But the "boost" is not documentable as valid.
Posted Today 2:14 PM (GMT -5)

142 said...
Before a reason to ask, D level tests are protested or not paid by insurance, so I think few have pre - PCa numbers. Mine are average.

My current numbers are in line when boosted with 1 IU per day. But the "boost" is not documentable as valid.

Good point about the insurance vs pre-PCA #s.

Come again about: "My current numbers are in line when boosted with 1 IU per day. But the "boost" is not documentable as valid"? 1 unit per day? And not documentable as valid?
Posted Today 3:16 PM (GMT -5)
I guess I shouldn't vote since I'm not yet diagnosed and only have rising psa and bph. But as I said in the other thread I'm in Florida, get a good amount of sun and supplement but tested just barely above acceptable.
Posted Today 3:20 PM (GMT -5)
Insurance always paid for my D tests, pre PC diagnosis
Posted 2/12/2016 7:14 AM (GMT -5)
I try to keep mine close to 100. It's hard to keep it that high in the winter. I take 15,000 IU of D3 in the winter and 10,000 in the summer. I also try to get as much sun as possible.

Just had mine tested about a month ago (Jan) and it was down to 65. Just bought a full spectrum light bulb to see if that will help a little.
Posted 2/12/2016 10:29 AM (GMT -5)

richh said...
I try to keep mine close to 100. It's hard to keep it that high in the winter. I take 15,000 IU of D3 in the winter and 10,000 in the summer. I also try to get as much sun as possible.

Just had mine tested about a month ago (Jan) and it was down to 65. Just bought a full spectrum light bulb to see if that will help a little.

Wow, Rich, that is a pretty high target. Not saying you are wrong, I think I am satisfied with 50-60 until we get some more solid trials. Also thinking, how much could we generate back when people were out in the sun all day for work or play? I know it is easy to generate 10,000 iu, but does it stop there via auto-regulation, or does it go even higher if you stay out in the sun a long time?

Post Edited (BillyBob@388) : 2/12/2016 10:56:50 PM (GMT-7)

Posted 2/12/2016 7:15 PM (GMT -5)
I had thyroid removed in 1973. They also got too many parathyroids, so I have had low calcium issues ever since. Also have low Vit. D.. PCP has me on 50,000 units once a week. That is a prescription dose.
This was all before DX. Have been seeing an endocrinologist since being on the Eligard to watch the calcium and the bone loss. So far so good. Only 2 more shots (3 mo.) to go. Will have a bone density scan in July. The Endo didn't want me on Prolia.

Carl
Posted 1/17/2019 2:35 PM (GMT -5)
Bump of an old thread, hoping for some updates to this poll(sorry if I have started a new poll about this since this one 3 years ago, I did not see it). Maybe I should just start a new poll? Not sure. Results so far:
Low/intermediate Risk, sufficient, 30-100 ng/ml - 0.0% - 5.0% - 1 votes
Low/intermediate Risk, insufficient 21-29ng/ml - 50.0% - 10 votes
Low/intermediate Risk, deficient, 0-19ng/ml - 10.0% - 2 votes
High Risk, sufficient, 30-100 ng/ml - 5.0% - 1 votes
High Risk, insufficient 21-29 ng/ml - 10.0% - 2 votes
High Risk, deficient 0-20 ng/ml - 20.0% - 4 votes

So, as of 2/2016, we only had 20 votes. Probably because most people had no idea what their vitamin D levels were at or near their diagnosis with PC. Others(like me) might have had a level checked only after they had already started supplementing. This left me to guess I had been either insufficient or deficient, since first time I checked it was after some months of 2000 IU/day, and I was still "only" 30 ng/ml. But, I'm not even sure if I voted, since I was already supplementing.

Anyway, only 20 votes. Looking at all risk category of PC, of the 20 voting, 2(10%) were "sufficient". 18(90%) were either insufficient or deficient.

Breaking it down by risk category:
low/intermediate risk N=13: 1 was sufficient(7.6%), 10(77%) were insufficient, but only 2(15%) were out right deficient.
High risk(N=7)....1(14%) was sufficient, 2(28%) were insufficient, and a solid 4(57%) were deficient. A whopping 85% of us high risk guys were ether insufficient or deficient in vitamin D.

Of course, a whopping 92% of the low/inter group were either insufficient or deficient. But looking at just the worst category- deficient(<20ng/ml), only 15% of the low/inter group were in that category, compared to 57% of the high risk guys. 3.8 times greater high risk in those who were deficient. Still makes me wonder if there might be a relationship.

Of course, the question always remains: is it the vitamin D deficiency increasing risk of PC? Or, is it PC causing low Vit D levels? RCTs with Vit D vs breast cancer as well as all other cancers(but not PC) in the study group, where the higher the level(attained from supplementation), the better the results, with the very highest levels(over 60, or maybe 50?) being by far the best results even compared to the next highest level, make me think it is not the PC causing deficient vit D levels. But I could be wrong of course. ( 1 unconfirmed RCT of Vit D vs PC showed no advantage or harm, but I had a lot of questions about that study, if memory serves- not that means it was a bad study, but I had questions)

But the more guys we can get with way over sufficient levels(for 99% of us, only attainable via supplementation), at least if it existed some years before diagnosis, the better an idea we will have of which of the above it is.

So guys, if there are more members here who did not participate in this poll from 3 years ago, please do so and we can have greater numbers. Vote supplying you vit D and risk category. If the poll is still working? If not, I will have to start a new one. Unless the mods can make it function again(I'd hate to lose all those voters from 3 years ago)
Posted 1/18/2019 1:33 PM (GMT -5)
I'm thinking you should have tried again instead of bumping the old thread. I read it for the first time and was confused what you are looking for. I didn't have my Vit D tested until after I started ADT. MO ordered it and I was low so I'm popping those along with my other meds.
Posted 1/18/2019 1:59 PM (GMT -5)

GoBucks said...
I'm thinking you should have tried again instead of bumping the old thread. I read it for the first time and was confused what you are looking for. I didn't have my Vit D tested until after I started ADT. MO ordered it and I was low so I'm popping those along with my other meds.

So you were low, deficient and high risk? Looks like you voted, so the % of high risk that is either deficient or insufficient is now up to 87.5%, with the % of HR that is deficient is up to 62.5%. Thanks!

Mods: do you know of a way I can start a new thread/poll and keep the current results in that poll? There may be folks who responded in the first who will not be posting here anymore.
Posted 1/18/2019 6:35 PM (GMT -5)

BillyBob@388 said...

halbert said...
As far as I know, I've never been tested for vitamin D.

I bet that is most of us.

Let me add another caution. The levels in the categories for this poll are based on ng/ml. If you have been tested, but your results were in nmol/l, you will need to divide by 2.5 to get to ng/ml and see where you belong on the sufficiency scale. So, if you were a impressive looking 60 nmol/l, you would be 24 ng/nl, insufficient.

I get tested for vitamin D in my annual blood test for my physical. i'm in my 9th year of remission and I was told last year D is low so now I take a supplement, which I was also taking in my treatment days.
Posted 1/18/2019 10:26 PM (GMT -5)

F8 said...

BillyBob@388 said...

halbert said...
As far as I know, I've never been tested for vitamin D.

I bet that is most of us.

Let me add another caution. The levels in the categories for this poll are based on ng/ml. If you have been tested, but your results were in nmol/l, you will need to divide by 2.5 to get to ng/ml and see where you belong on the sufficiency scale. So, if you were a impressive looking 60 nmol/l, you would be 24 ng/nl, insufficient.

I get tested for vitamin D in my annual blood test for my physical. i'm in my 9th year of remission and I was told last year D is low so now I take a supplement, which I was also taking in my treatment days.


........................................................................................................................................................................................
Thanks for the point about the conversion from nmol/l to ng/ml.

So, sounds like you were low also? And looks like you voted in the low/inter risk as deficient? (or some one else did. So now, of the 23 who have been tested and responded, the numbers either insufficient or deficient are 21 out of 23(91.3%), only 2 sufficient(8.7%).

That is impressive.

But, I can see one other problem with coming to any conclusions based on this data. What if the entire population is deficient or insufficient? Then naturally we would expect almost every one with PC to be the same. That would not prove that the low D did not contribute to the PC, especially with the even greater rates of deficiency among the high risk. However, I am thinking our rates of insufficiency (21-29ng) are higher than the general population, and especially our % of deficient(<20ng).

https://www.scientificamerican.com/article/vitamin-d-deficiency-united-states/

Somebody said...
..................................
The trend marks a dramatic increase in the amount of vitamin D deficiency in the U.S., according to findings ..... in the Archives of Internal Medicine. Between 1988 and 1994, 45 percent of 18,883 people (who were examined as part of the federal government's National Health and Nutrition Examination Survey) had 30 nanograms per milliliter or more of vitamin D,



But 92% of us are <30, and 57% of the high risk are 20 or less. Only 8.7% of us are 30ng or more. Compared to 45% of the general population.

Somebody said...
a decade later, just 23 percent of 13,369 of those surveyed had at least that amount.

That is a lot worse in a decade, but we are still a good bit worse than even that worsening percentage. And even if we were not worse as a group(if larger #s actually confirm that we indeed are worse), that still would not prove that low D was not contributing to the bad health and even cancer rates of the general population. But the way it is starting to appear, those of us diagnosed with PC are in a significantly worse vitamin D status than even the already poor status of the general population. Does make me wonder.

Post Edited (BillyBob@388) : 1/18/2019 8:44:50 PM (GMT-7)

✚ New Topic ✚ Reply