help with vit D levels

Patoo, The same thing happened to me.  D3 is not a RX so the pharmacy cannot fill it.  You can just buy it over the counter, even 50,000 IU's.  I did it too!

I don't bellieve it it peed out since it is fat soulable.  We store it in our fat.  How convenient!  I think I read somewhere it stays in our bodies for about 4-6 months.  I'm sure someone else will know better.

Me too!! LOL!

Juli- Sam

I will get my parathyroid levels retested soon. My PTH level was at 68, and has been between 52 and 68 for a few years, but my calcium levels are always 9.2.... so it's only slightly elevated, but has not gotten any higher.  On the SCARY DOCTOR SITE that is prevalent on the internet.... you know which one,  it often says that you can have wavering levels of PTH for years before it's full blown PTH. My endocrinologist and my internist have followed me, but did not seem to feel like I have primary hyperparathyroidism based on my results and records from the past 5 years. Who knows? I could have it, but at this point, am feeling so much better from the Vit D supplements that I am not too concerned at the moment.

As for calcium citrate supplements, I tried that for my IBS, but it didn't really help me out too much, so I stopped. I have not been supplementing with calcium, but I hear if you are prone to kidney stones, it is best to stay away from the calcium carbonate, and you should use citrate.... less opportunities for stones, apparently.

fat storage...I swear I can't see the little print anymore...typo city

I did take 5,000 IU's daily after I did the D2 for 12 weeks.  My level went from 37 to 35. 

Marianna:  Thank you for your response about the parathyroid, yes, I'd be interested in your next test results, Sam too.  I am getting mine checked again after the 12 weeks of the 50,000 D2.  I do not feel any differently, still extremely fatigued, but been that for years, so that's normal for me. (I've been taking the D2, 50,000ius now for 6 weeks)

About the PTH, you'd be VERY surprised how my levels fluctuated since radiation (and yes, the parathyroid glands can be closer to the chest, my tumor was removed towards the left breast--the parathyroid gland and tumor).  My levels ranged from a high of *gulp* 787 (!!!) to 343, then back to 'high' of 87.  Calcium has been inching up again to a 10.0, endo is not worried, he feels the vitamin d deficiency is causing these levels.  This is a new endocrinologist for me, I switched after my *ex* endo 'just had no idea' WHY my levels were around 700?????   :O 

Yes, that stupid scary parathyroid site, I REALLY recommend NOBODY read anything on there, but that's 'our' opinion, lol.   My endo and surgeon had said I definitely developed primary hyperparathyroidism AGAIN, even after levels returned to normal after my parathyroidectomy in 2002.  I think radiation skewed everything up again.  (ended radiation 2/2007)  Who KNOWS where my three other parathyroid glands are, if the one diseased one was towards my chest, could certainly be towards my other side that was radiated.   Docs don't believe that one, tho, of course!    ALL my best, have a great Friday...going to get port flushed today (yep, will keep that power-port for as long as it works, it's a replacement port for the port-a-cath that developed a sheath and had to be removed this past March--all my docs agreed since it's impossible to get blood outta my one arm, to get another port--YES!)         ~juli

Hi Juli,

When I was first tested, I was at 19.  Dr put me on D2 for 12 weeks (1x per week).  I also was taking 5,000 IU's of D3 per day. I tested after 12 weeks and my level was 37.  I took 5,000 IU's of D3 for 12 weeks and was retested, my score was 35!  UGH!  So now I was taking the 50,000 IU's per week (which is only about 7,000 a day).  I have stopped this because it is finally summer in Boston and I can get free Vitamin D.  I do still take vitamin d with my calcium and multivitamin.  I also take about 2,000 IU's a day if I know I did not get out in the sun.  With 2 boys, I am always outside!

I don't want to be tested again until late fall because of the sunny climate now.  I'm sure my levels are rising.

Best of luck to you.  Hope this clarifies some things.

I take 15,000 to 20,000 of Thorne D3 per day now that my level has increased from 22 to 61.  Will check levels again in 4 months.  For now Doc said stick with this dose.

Precioustime:  I became very deficient while taking 1,000ius of D3 daily.  I cannot take calcium, so I don't know the answer to your question.  I 'assume' (hate to do that, lol) that you have an endocrinologist?  I'd ask him about the calcium question.   I'm still in the middle of taking 50,000ius of D2 (prescription ordered by endo), so will wait til done with that in August for testing, then a HUGE talk with endo about specifically Vitamin D3, not D2.   Good Luck to you....juli

precioustime

I struggled with this one too - finally settled on taking a good calcium citrate with magnesium and 400 iu of vitamin D3, and once a week, I take a single 1000 iu of D to make up the difference.

Oh, yeah, and then once a month I take 50000 ius to make my endocrinologist happy, and keep my D over 20

Thanks juli, lost my post but in a nutshell I'm guessing my Onc/PCP didn't recomment endo because as far as they are concerned my D3 is normal and as far as I know I don't have a thyroid issue.  They are not up on Vit D3 and cancer.  So on my own I'm supplementing with 3000 IU's daily plus another 800 that I get from my multi and calcium.  My Onc orders blood work every 4 mohths so we'll see what it reads next - end-September visit.

(actually lost it again but did a copy first - hehehe)

Does anyone know if Vitamin D deficiency can cause you to be thirsty all the time and a very dry mouth?? I'm experiencing this now.....just cannot eat enough popcicles or ice.

kcshreve...mine was 22 and I ended up changing brands to Thorne 5000 and using 15,000 to 20,000 a day to get to 61.

And so we can stay  confused:

"This suggests that there's a healthy level for vitamin D and, if you are deficient, you have an increased risk of metastasis, but if you go above [a certain point], your risk of death goes up again," Goodwin said.

Although it's not a firm conclusion, Goodwin added, the finding "is raising a red flag. It's probably not safe to take very high levels and get vitamin D levels up really high."

but then just noticed that the article is 2 years old so who knows - just putting it out here FWIW:

http://www.washingtonpost.com/wp-dyn/content/article/2008/05/16/AR2008051601472.html

Someone have more recent data on how much may be too much?

Jo:  Wow, that's certainly not impressive on the increase in Vitamin D level.  I also did the 8-week 50,000ius before being dx'd with cancer, then 1,000ius a day, got very deficient (17).  I am going to be questioning my endo QUITE thoroughly after getting done this time with 12 weeks of the D2, 50,000ius (August).  See what the level has gone up to.

Agree with posts that said above 65 is optimal for breast cancer survivors/fighers.  Mine has recommended a level of 70.  I very much doubt with the D2 script that I'll be anywhere close to that, so it'll be interesting.   Lots of info here, thank you all so much.  I SO believe it's imperative to have optimal levels as I also believe it affects who gets breast cancers (no cancer in my family at all).   ALL my best to all of you~~juli