help with vit D levels

I am working with a naturalpathic oncologist and she says she wants me to maintain my Vit. D level at no less than 85

Patoo -- Glad to read your results especially the decreased pain.  I've had similar results.

I've enjoyed much less pain even though I have arthritis in my hips and back.  My energy level increased in proportion.  I stopped to take glucosamine/condroiton too....sometime last Spring.  My D3 levels were 28 in August.  Then I increased my calcium/D3 supplement to 1800 iu per day and took an additional 25,000 iu liquid D3 over a three month period following the incremental dose suggestions I've read about.  I'll test again in January.  

I've been so grateful to have learned about vitamin (hormone) D3.   

Best wishes to all as always,

Marilyn 

Okay, received Vitamin D results today...up from 13 to 39.6 ng/ml.  Still not where I want to be, but I know it takes a long time, still on 5,000ius D3 daily until I hear otherwise.  (Doc's office called, but did not have full results, I had to request them myself from the lab...as I say, one HAS TO be their own health advocate).  Parathyroid still double at 140pg/ml (norm:  10-69).  Had hoped if the vitamin d3 was 'normalized', the PTH would get better.  Ah well, patience!  Plus had to request my CBC/CMP that was not sent to PCP, as onco took that same day, lol.   Faxed it to primary doc.  I try to keep up with everything, and do docs offices LIKE that:  NOPE...do I care?   NOPE.       JO, let us know about your levels.   ~juli

I'll be anxiously awaiting your results, JO, thank you.  Nope, the D2, the 'usual' prescription given for vitamin d deficiency actually LOWERED my D3 by 2/3.  I don't believe myself that D2 is the optimum D level one wants, as studies show that D3 deficiency can definitely affect bc, parathyroid, calcium, bones.  I have a long way to go, but I know it's a gradual process.  THX! ~juli

Quick question - my Vit-D level was a 10!!! so my Onc prescribed 50,000 ui of Vit-D once a week for a month.  I took it and had a terrible reaction - my face puffed up and I felt unwell generally.  I went to my regular Doctor and she suggests 5,000 mgs once daily until my levels get up to the 80-100 mark.  Anyone out there had a bad reaction to such a large dose of Vit-D? Thanks.

In March of 2009, my Vit D was 5.  I took 1000 units of D3 and was retested in August (up to 25) after a summer of quite a bit of sun.  I retested in March 2010 and was at 28.  My onc had me take 50,000 units once a week.  In October, I was at 31.  My onc said continue with the 50,000 but that was after a summer of sun and lots of training walks for the 3 day.  I live in the NW and if I only went up 3 over the summer, I am confident my number will go DOWN.  I spoke to my PCP (new one) and she told me to continue taking the 50,000 so I theoretically maintain this level and then take an additional 6,000 daily.  We are going to re-test in 6 weeks to see if this new one is working better for me.  I think experimenting on the dosage, frequency, and delivery method (liquid, capsule, chewable tablet, etc...) for some of us is the only way to see what works best for us. 

I also read some of your comments on telling doctors when you "fire" them.  I had a PCP that I had had for several years but didn't go in to see very often.  I didn't have a strong relationship with her.  Anyway, when I had my biopsy, they had her name as the contact.  Her nurse called and told me I had breast cancer.  She asked if I needed a referral.  I said not at this time, that I was going to call a friend who is a ob/gyn.  It has been a year, I have NEVER heard anything from her or her office.  Not even a follow up letter.  You would think they would have some compassion and follow to make sure I was OK.  I couldn't go back to that office.  I have decided to send them a letter telling them about my decision.

I suffered from IBS for 5 years prior to my BC diagnosis, and I think it was a causitive factor. I was very malnourished by the time I started treating it..... after I got diagnosed last Spring. So I am on Gluten free. Yes, it's hard to change, but I will say that it's completely changing my health status and my GI tract. I no longer have daily diarreah!! YAY!! Of course, the magnesium probably helps that as well.

GF-- difficult, but oh-so-worth-it if you have digestive problems!!!

I see some people posting about taking 50,000ius, is that D2 or D3?  A HUGE difference there.  I took the prescription (green gel pills) 50,000ius of D2 for 12 weeks, my D3 dropped SIGNIFICANTLY (by 2/3 to 13).  I have been taking the 5,000ius of D3 for months now, and my total D is the same, 39, D3 is 36, so it's increasing slowly.  D2 I will not take any longer, it does no good for ME, personally.   I may go the 50,000ius weekly of D3 route, and also keep taking the 5,000ius D3 daily as well. 

ISSYMOM:   That is horrendously negligent on your doctor's part not to follow-up with you.  Good for you sending them a letter, we MUST let these docs know we will not tolerate negligence.

ALL my best to you all~~~juli

Makraz:  Yes, I'd love to hear your results.  I'm thinking of going the 50,000ius weekly (D3) and also staying with 5,000ius D3 daily, see how I test in 3 months.  I know this is a gradual process, so I'm 'TRY'ing to be patient (yuh, riiiiiiiiiiiiiiiiiiiiiiiiiiiight, lol).      Good Luck!   ~juli

**I SO hope that docs realize the script we get for vitamin d deficiency is D2, and it does NOTHING to help our D3, true, it WILL help the D2 levels, and the total D by a little bit, and yes, I've told my docs that, and they're like, well that's the only 'script' for vitamin d...I call BS**

YAYYYYY Makraz!!!!  That is a good level, good for you.  Proof that we who are chronically deficient need to UP our dosages.  Thx!       ~juli

Rocket:  I do recall that, and also my oncologist says that optimum would be around 80.  Over 100 ng/ml is still considered 'toxic', not sure if that's still true.   ~juli

100 is stated on my test results as 'toxic' level.  I don't think labs are updated on this, or they're being on the cautious side.   ~juli

**I'm trying now to find 50,000ius of D3 at pharmacies near me, my regular pharmacy does not have it, and cannot order it, I'm on a compounding pharmacy right now on the phone--they cannot order it either?**  Where is everyone getting 50,000ius of D3 from?   THX

I'm on phone with Walgreens--pharmacist says:  Nope, highest dose he can order is 2,000ius.  He did give me the 'main' number to call, so I will do that.  THX...juli

Walgreens is 'checking' for me right now online...

Makraz:  Did you need a script for the one you get at your Walgreens (is it OTC, or does your pharmacist order it?  CVS is my normal pharmacy and they said they cannot order it)

Makraz:  They are asking for the UPC Code, that way they can possibly see how it's ordered, can you provide that?  Thank You!