Vitamin D Takers?

CancerStinks

I keep reading about Vitamin D. Any body taking this? My count was low and the doc put me on 2000 IU per day and will recheck my levels in 90 days.  any insights about this are appreciated.  

Rachel1

My nuitritional onc. (Dr. Jeanne Wallace of Anticancer a New Way of Health fame) has me on 15,000 IU /day and vit. K with it. I'm due to have my levels rechecked. 

Rachel

May 2010 IDC grade 3, 7+lymph nodes, BRCA2+, Er+ 

CancerStinks

Thanks so much rachel1.  A nutritional oncologist:  Now I like the sound of that.  I gotta get me one of those.....  Are you also taking tamoxifen?  

christine47

I take 50,000 IU every 4-5 days. 

madpeacock

I take 5000 IU daily and have for about 2.5 years. I was dreadfully low when I started and it is in the mid range now. I think it is one of the vitamins that you don't miss until you STOP taking it and then your aches, pains, and illness start to come back. Same goes for Vitamin C for me. 

CancerStinks

Thanks Christine47.  Are you also on Tamoxifen?  Which doctor prescribed your dosage?  My MO was pretty nonchalant re; vit D3 but my menopause specialist is the one who prescribed the 2000 iu for me, that was before my DCIS diagnosis. thanks!

GirlPowerDebbie

through my own research I settled on 5000 IU of D3 a day, plus calcium.  It boosts your imune system and reduces bone loss. 

GirlPowerDebbie

through my own research I settled on 5000 IU of D3 a day, plus calcium.  It boosts your imune system and reduces bone loss. 

CancerStinks

Hi Girlpower:  thanks for the post.  So you didn't have your level checked first?  My RO told me not to take it during rads, but now that I am done with them (YEEHAW!)  I am back to my 2000 i.u.s. Are you on Tamoxifen too? 

christine47

cancerstinks,

My onc started me on the vitamin d, but I also saw an endocrinologist and he put me on this super high dose.  I also take calcium and yes I am doing the tamoxifen.  When I was diagnosed I was premeno, and would have never guessed my D level was so low.  I am healthy eater, exercise and get plenty of sunshine.  I would have never guessed I would get BC either.  Is anyone else on as high a dose as me??  I am just at low normal after a year on this dose.

peggy_j

Reposting my comment from another thread

 

I met with a bone endocrinologist last year and he thought there may be risks when taking super-large doses of Vit-D. My complete notes on that meeting with him are posted in the Bones forum, but here are my notes related to Vit D.

  

"Vit D. He said the general recommendation on Vit D supplements of 600-800 UI is probably too low and he thinks 1000 UI is probably better. He knows that some cancer researchers are recommending extra Vit D. That's not his expertise but he said there is no known toxicity when taking 3000-4000 IU day. (this should be the max including food and sun exposure). In my case, he recommended a supplement of about 500 IU day. However, some supplements are mega-doses (like 10,000 IU/day) and that's too much."

It was a long appointment and we discussed many things so I didn't get into details about the toxicity risks of too much Vit D. (He said some supplements have no toxicity risks; i.e. with Vit C you pee out any excess, but that's not true for all supplements, such as Vit D) So just an FYI that it might be worth investigating before taking super large doses.

CancerStinks

Thanks again Christine47; this can be a sad and lonely journey and I really appreciate your thoughts and insights.  I never thought about an endocrinologist.  something else to consider.....

pejkug3

I take 5000IU per day.  NOW brand, oil form.

My level started at 24 in April 2011.  I just had it rechecked and it was 47.  (In Spetember 2011 it was 36)  Long journey to get me up on it.

dogsandjogs

I am only taking 500 IUs a day of vitamin D3 this is with 630 mg of Calcium.

 I guess that is way too low although I'm outside at least 4 hours a day. 

SoCalLisa

Good to get your blood levels checked first then go from there

dogsandjogs

Thanks Lisa;  That brings up a whole other subject actually. I had blood work done in January and when I hadn't heard from the doc I asked my cardio NP if she could call the office. She did and they immediately sent over "some"of the results. Everything looked normal, but I still haven't gotten the updated results and I have called the doctor's office twice.  They tell me they cannot give results over the phone - the doctor has to do that. But it has now been over 3 months!  I'm thinking of changing doctors although I like this guy.

dogsandjogs

Where would I find the vitamin D level on the blood work report? Is it under another name?

crazy4carrots

dandj -- Although it might be different in the U.S., usually the doc has to specify the Vitamin D work; it hasn't normally been done in the regular blood test.

 

Just wanted to add that I've heard the 50,000 IU is frequently only Vitamin D2.  It isn't absorbed as well as D3.

 

A year-long study was done at St. Michael's Hospital in Toronto some years ago with MS patients, whose Vitamin D intakes were gradually increased to 50,000 IUs weekly, to evaluate safety (and to see if it improved MS symptoms -- the theory was that because there are far more incidences of MS in northern populations - Canada, the Scandianavian countries etc., it might be due to less sun exposure).  Anyhow, 50,000 IUs apparently had no bad SEs, but symptoms were not improved.  I'm afraid I can't remember if it was D3 or D2, however.

 

I was able to double my level over a period of 6 months with 5,000 IUs of D3 -- but then when I reduced it to 2,000, my levels dropped again.  But I hasten to add that everyone is different! 

Kicks

I take 3000 iu of D from Sept. - May and have since 1997 (per my PA's orders). After we moved here I started having problems with SAD and it does help - along with my lightbox. I take 1000 during the summer.



Also take my calcium, B complex and potassium. 1/2 way thhrough Taxol potassium levels dropped drastically and still have to take it to keep in norm levels. Also just found out I'm low in zinc now so she's sending me some.

lostinmo

My MO has me on 50,000 once a week

CancerStinks

dogsandjogs:  You have to request your Vit D level be checked.  You can also have your estrogen level checked, but for my estrogen check I had to go for the blood draw 3 days after I started my period counting the day I started as one.  Turned out at age 52, I had the estrogen level of a 25 yr old.  yes, I could still get pregnant, the odds that an egg was being released each month was low, but I was still told to use protection.  Having these other levels added to your CBC could trigger a copay.  It did for me, but I think it was worth it. At some point I started considering all these extra tests as little gifts i give myself.

tidepool

When I asked my PCP to test my blood levels, he looked at me and said "what do you need to know that for" in a really mean voice...wow...anyhow I showed him a study I had seen and he did it...and I needed megadoses to get it up...

wenweb

I was just tested and am at the very bottom of the range.  Since the results were mailed to me, I haven't spoken to my onc or PCP about it.  Wondering if I need to up my intake.  Currently, I am taking 1000mg/day.  Any thoughts?

CancerStinks

Tidepool:  wow.  So glad you didn't blink when he tried to bully you.  Sometimes it is hard to follow through when you get that kind of response and I am glad that the caretaker in you was up for the challenge that day.  It is hard to always be "on" as your own advocate, especially when you feel like crapola.  But we gotta choose to do that.  Glad you got what you needed. 

NattyOnFrostyLake

My onc says there is no correct dosage because you have to treat the Vit D blood levels of the patient.

 I started at blood level of 25 and got to 75 taking 10,000 to 20,000 a day. As soon as I cut back to 5,000 in June my level dropped to 50. He wants people to aim for 85 as a blood level.

The Comprehensive Cancer Center in my area is having good results. Very big for the prostate cancer patients.

Anonymous

There are Vit D threads on here that you might want to browse for additional information as well.  I did not ask to be tested until after I found the information on them.  Initial tests over a year ago had my level at about 30 which both my MO and PCP said was normal.  However it seems that is low 'normal' for the general population but may be too low for BC folks (us). 

The 50,000 that some are on is Vit D2 which, as someone already mentioned, is not absorbed as well as D3 and most who were put on it have reported little if any change after being on it for several months.  Many MO's do not seem to place any truth in the benefits of D3.  Studies are also inconclusive so far.

So, I put myself on 5000 iu's of Vit D3 per day about a year ago. Had them add it to my blood work 2 weeks ago and my level has gone from about 30 to 47. You will see on the other Vit D threads that some docs want their BC patients to test, some around 60 and some as high as 100. I will tell you that since I've been on the 5000 iu's I have been able to go off of my gluco/chond that I was taking for joint issues. I am pain free and I really believe it's because of the Vit D3 since I take few other supplements (though I have not heard anyone else claim this). BTW, I'm on Arimidex which has joint issues as a major SE. I was actually doing the D3 chewables because most came in gelcaps which I did not want, but then I changed to the liquid. Hope this helps somewhat but do check the Vit D threads for info on how others fared.

CancerStinks

Hi Wenweb: I just pulled my report:  It says Vitamin D (25 Hydroxy) (82306) next line: 25-Hydroxy Vitamin D (L) 23 ng/mL should be 30-60.  My menopause specialist told me to take 2000 IUs of D3 for 90 days and then be retested.  I'm about half way there so will know soon if I need more or not.  I don't know what to say re; your dosage, but I think your doctor will have you take more than 1000.  You might want to do some googling with your numbers ansd see if you can find anyhting.  Good luck! 

CancerStinks

Thanks so much Patoo for all the good information:  why didn't you want to take D3 in a gel cap?  Why do you think liquid is better.  I need to buy some more soon and don't mind switching to liquid, but don't know why I would.  Thks!

CancerStinks

Patoo:  My MO also didn't seem so interested in my Vitamin D questions.  I just didn't get any real info from her and am looking for a second opinion now.  

tidepool

I have seen reports that want the D levels over 50...

Lee7

I make sure I take a Vit D that is a tablet not a softgel one because those usually contain soy oil and I'm ER+ so trying to avoid any extra soy.

I take 2000mg a day, and its kept my level at 62-67.  I was getting my Vit D tested every 3 months but now I thinkI can safely stay on this dose and not worry about it.