blood test for vitamin D question

[Donna]

Hi amazing group!

I am due for my next check up with my oncologist and I noticed on the blood test she requested a check on my vitamin D levels. I take vitamin D supplements - does anyone know if I should stop taking them before the test in case that would skew the results? I will probably get an answer here quicker than calling her office. :-)

Thanks, Have a GREAT day!

Donna

[vickie h]

Hi Donna,
Don't stop taking the vitamin D! Your blood results reflect how much D is in your blood and not taking the D for a few days won't have an effect on that. It takes months, sometimes several, to get your D levels into the 40 to 60 range, which is the normal range. I have been ingesting 10,000 mg a day and my levels went from 45 to 50 after 4 months on that dose. My Onc is watching those levels closely as she wants my levels to increase to atleast 60 (to her, the healthiest levels for me). some of her patients are on 20,000 a day! Good luck and let us know what your results are. Love, Vickie

[Donna]

Thanks Vickie for posting your response - I had no idea how long or how much it might take to keep vitamin D levels in a healthy range! Wow! I know it's really important for we her-2 people to do this - now I am really interested in what shows up on that blood test!

Thanks so much!

Donna

[lizm100]

Hi Donna-

I was instructed not to stop taking my vitamin D for the vitamin D blood test. Although I was taking a vitamins D supplement for many years my doctor still thought my levels were on the low side and increased my dosage by 2,000 iu's to a daily intake of exactly 3,004 iu's.

Hoping all your levels come back perfect,
Liz

[swimangel72]

My oncologist never mentioned testing me for Vitamin D............actually they take blood and never tell me ANYTHING! It's my own fault - I should just ask. Better yet, I should ask for copies of all my blood test reports - I definitely will in April when I get my last Herceptin tx.

[Donna]

I'll keep taking my 1000mg supplement and see where I end up. And I always get a copy of my blood tests, I file them. If I see a high or low marker on it I ask about it. The report is all in code, but there are medical dictionaries online that deciper the code so I know more about what I am looking at.

Donna

[Mary Jo]

Hello all,

I just had my Vitamin D level and cholesterol levels checked. Both were EXCELLENT. I did not stop my Vit. D before the test and I take 2000 i.u. twice per day - for a total of 4000 i.u. PLUS 400 i.u. in a multi. (I did not take any D the morning of my blood test though) Anyway, my number was either 63 or 68 - I can't remember now....BUT, I was happy with that number. Last years number was 30 something I remember and I wanted it higher so increased my D supplementation.

Good luck to you....

Mary Jo

[StephN]

Good for you MaryJo - getting your vitamin D level way up like that.

Mine was 30 in December (first time ever checked) and I went on the megadose of 50,000 units once per week for 8 weeks. Had my draw for recheck last week and expect a call this coming week on the results.

If it takes 4,000 iu per day to keep it high, I will follow your example. Seems our diets plus a multi-vitamin are just not enough for some of us.

Hope Donna gets a good number!

[Ellie F]

Hi been reading with interest about all your vitamin D levels.My understanding is that tumour cells have increased receptors for vitamin D which is believed to be a substance that can cause their death. Is this correct? Is there any reason why high levels are thought to be especially important for her 2 pos cells? I raised the vit D issue with my onc but he just looked at me like i'd gone mad! Appreciate any info Ellie

[Donna]

I am taking vitamin D because I read that it is a cancer fighter and as I recall it really is good for her2 - I usually save my research information, but can't find it on D. I am surprised at how much everyone is taking to maintain a high level - I thought I was overdoing it at 1000!

This is all great information, thanks so much to all of you!

Donna

[ElaineM]

The blood test I had for vitamin D included how much vitamin D was from supplements and how much vitamin D was there without supplements.

[Debbie L.]

I had been supplementing with 2K IU's for almost six months, plus I'm an outdoor person, and my level in early January was ... 14 (!). Now I'm up to 4K IU's daily but not really wanting to do the blood test again. Maybe I'll try it again in July or August, after lots of outdoor/sun exposure.

So far, most of the evidence on this is not able to differentiate which came first - the chicken (low D levels) or the egg (condition CAUSING low D levels rather than being cause BY low D levels). While it's pretty well-confirmed that low levels are not good - it's much murkier regarding what to do about low levels. While it seems intuitive that supplementing to raise levels must have some benefit, we don't really know that yet. It may (surprise, surprise) be much more complex than that.

Debbie Laxague

[Mary Jo]

As I stated earlier, I take 2 Vit. D supplements a day - @ 2000 iu's each PLUS a multi that has 400 iu of D for a total of 4400 iu's. BUT, once the weather warms up and I'm outside hours a day I will reduce the supplements to just 1 2000 iu a day as I feel I will get the rest in the sunshine. In fall I'll up it again.

Mary Jo

[Midwest Alice]

Haven't been posting lately just reading. Is the Vitamin D you all are talking about Vitamin D3? Wanted to make sure I am taking the right one. D3 Cholecalciferol is what mine is. After reading this, I doubled to 1600 IU. I may add more. I wonder if my onc checks my vitamin D levels when he does my routine blood test?

Thanks my warrior friends, may you be aware of Gods blessings shining on you today!

[Lida]

Hi Vickie and her2 friends,
My vit d. level was at 24, though I was taking over 1000 of d3 supplements per day. My prim. doc recommended taking weekly 50,000 iu d2 for 8 wks and then rechecking. I am on a pretty tough regimen now of Herceptin/Taxatere/Carboplatin and am concerned about additional side effects from the large dose of vitd. An onc I had in the past said this combo (with the vid d) could increase my side effects such as nausea. My nutritional onc. dr. suggested taking 4000 iu per day of d-3 instead. Vickie and any of you on chemo and high dose vit d, do you find increased side effects from the vit d? Any other friends had any side effects from high dose vit d? Thank you so much. Lida

[Shadowpilot]

Hi all,

I take 10,000 mg/day and my levels were at 66 last check. My naturopath thinks that is a low level of normal. Living in the NW, I will continue on this dose until the level gets a little higher and the sun returns for its brief summer. I can't find much on side affects of too much Vit.D. Anyone else?

:) Sue

[Mary Jo]

Hi Alice,

Yes, I am talking about D3. That is what I take.

Hugs to you,

Mary Jo

[Linda]

My onc has been testing Vit D levels for some time. She believes that women who've had bc should be on the high end of normal, and most of us are low. I took supplements for a while and ended up having to take 7000 units a day to get my levels where she wanted them (last level was 66.) We continue to test because she believes that too high a level can be damaging. I think the top level would be in the 80's or so (I'm sure someone else will know.)
I'm happy to keep taking the supplements. They're (d3) easy to take, cheap and I have no adverse effects. I actually think I'm not getting colds and flus when everybody around me is sick.
Linda
(dx 05, stage 3a)

[StephN]

Got my result today from last weeks blood test for Vit. D level. This is AFTER the 8 week megadose of 1 50,000iu cap per week.

Number is up to 50 - wow, the BIG 5-0.

Up from 30 pre-megadose.

So now Shadowpilot has me wondering if I need to really do more than the 4,000 iu/day I was planning???
(Since we share the same climate and can't always drop whatever we are doing and run outside when the sun does decide to shine!)

I was figuring on trying to hold around the level of 50.

Will see my med onc in a couple of weeks so will decide with her, since my general doc is only recommending the standard 1,500 iu supplement per day.

[schoolteacher]

Stephanie,

Glad to see that your level has gone up. Hope mine is that high when he checks my levels next week.

Amelia

[AlaskaAngel]

I have had my vitamin D 25, hydroxy test since I posted earlier, and it came back at 50 (middle of normal range). I found that interesting, because ever since diagnosis in 2002 I have advocated the need for adequate exposure to sun and getting enough vitamin D, to the point that if the sun shines here in winter at all (even at 20 degrees F) I am outside on my porch in my swimsuit. I've also been taking 400 IU consistently. I increased my D3 supplement to 1200-1600 a while back, and even with all of that my test came back still just mid-range of normal. I am going to make sure I take somewhere between 1600 and 2000.

Here is something RB posted a while back about vitamin D. that was pretty interesting, as well as some responses to his post.:

http://her2support.org/vbulletin/showthread.php?t=37448&highlight=vitamin+eyes

[StephN]

Thanks, Alaska - for posting that link to the webcasts R.B. recommended. I had meant to go back and review this thread again.

Especially to try and find what the EFFECTIVE AGAINST TUMOR ACTIVITY vitamin D level is thought to be.

This is the nitty gritty of this discussion to me since I am a stage IV NED and would like to stay that way!

[fauxgypsy]

My GP told me that the blood test wouldn't tell me anything because it did not reflect tissue levels. I am going to discuss vit. D with my oncologist when I see him. Still, it feels like my doctors are in the dark ages when it comes to nutrition. I would love to have a doctor seriously discuss nutrition and supplements with me, instead of saying that I should just eat healthy and take some calcium and maybe a multi vitamin.

Leslie

[StephN]

Hey Leslie -
You bring up a good question. I was thinking that the serum vitamin D was what I would be interested in as that is where I would expect the possible circulating tumor cells to be. However, those sneaky little cells could be hiding in tissues, marrow, etc.

Also I do not know how far down the D breaks and if it can easily traverse the capillary network.

Sheesh! Seems we can never get this doped out!

[Donna]

Thanks for posting the infomation on the videos R.B. originally posted - they were really good! And fun to watch. So much information we have to keep track of and so many supplements to take!

Someday someone should compile the posts on supplements and make a list of what to take and what to avoid. Oh, like I need one more project, but this one is truly worth doing!

Have a great day!

Donna

[Donna]

and they don't look good based on everything said here. My level is at 26, I am also low in calcium and potassium. I had the report sent to my internest as well as my oncologist (who ordered it) and she started me on potassium supplements the same day she received it. She indicated my oncologist would be the one to deal with the other abnormalities. And I had a bunch - lows and highs - maybe my oncologist can make sense of them - what it looks like to me just looking up the abbreviations is that maybe I am anemic.

More stuff, more supplements to take, add them to the pile!

I'll keep you posted on what I find out from the oncologist - thank you all for your invaluable help on this!

Best to you all! Donna