Vitamin D

[Cordelia]

So my dietician wants to put me on Vitamin D. I take calcitriol and a multi vitamin but I guess that's not enough because apparently my Vitamin D labs were  low as she kindly put it.

I already know the long-term effects and it scares me so I'm going to try taking  over the counter Vitamin D.    I am just hoping that it won't constipate me cuz with being on enough pills already, I have problems in that department sometimes and am hoping the extra pill won't make my problems worse.

Any of you take extra Vitamin D from having low Vitamin D levels? I am thinking its pretty common in dialysis patients from what the dietician told me.   

I am sad because I know if I could drink all the milk I wanted and ate a lot of cheese like I used to, I likely wouldn't have this problem. Never have before until renal failure. I know the kidneys help regulate the Vitamin D too so having low Vitamin D for a Dialysis patient makes total sense to me.    I just get frustrated cuz I know I can't have Vitamin D rich foods like all the dairy things I like since I have to watch the phophorus. Seems like I get my phosphate levels stabilized  from watching the dairy carefully and it SCREWS something else up it seems. I can never win. *sigh.       

[cassandra]

I'm sorry Cordelia, now I'm all back to depressed again. Don't worry not your fault, I shouldn't have said that.
By the way, I don't think vit D is a bad 'blocker' like iron I mean.

good luck Cas

[Cordelia]

I'm sorry Cordelia, now I'm all back to depressed again. Don't worry not your fault, I shouldn't have said that.
By the way, I don't think vit D is a bad 'blocker' like iron I mean.

good luck Cas

Oh no!! I'm so sorry, I hope it wasn't something I said.         

What do you mean bad blocker? I have never heard that term before.

[sparklelady]

Cordelia, when I was on D, my vitamin D level was low. My neph told me that the over the counter supplements weren't going to even help. He put me on hectorol 3 days a week. It did the trick.
Good luck to you!!

[adairpete]

My vitamin D levels were low, too.  The prescription vit D didn't move it one bit.  My neph then suggested OTC vit D (4,000 U per day) and within a couple months it was in the normal and has stayed there for over a year now (and it started in the single digits).  My neph said some people don't absorb the prescription vit D like they do the OTC, something about its solubility.  I never noticed a change to my bowels at all on either form of vit D.  In fact, I credit the increased vit D levels to improving my mood. 

[Cordelia]

I really appreciate all your feedback. I know in the past I was very intolerant to the calcitriol taking 2 tablets at one time, my bowels couldn't handle it. Plus, the Tums constipated me horrible too.
I take one calcitriol daily now and I'm okay, that doesn't bother me one bit.

What's Hectorol??

[lmunchkin]

Its just another name for a pill of Vit. D.  J was started on Vit. D too, cause his levels were low.  They gave him a prescribed Vit D. gel cap to take 1 a day.  He also takes calcitrol & sensipar for his PTH, which has come down alot (1700 to 300). The sensipar really came through for him. The only reason they kept him on calcitrol is in hopes it will maintain his Calcium levels.

We will be doing labs in 2 weeks, and then shall see if his Vit-D level is back up within normal!

Thinking & praying for you Cord.  Hope next labs bring "excellent" results!

God Bless,
lmunchkin

[Annig83]

I agree with Sparklelady, Vitamin D supplements (OTC) aren't going to do anything for your levels... people with kidney failure just can't absorb Vit. D like we're supposed to   BOO!

[Joe]

I have to disagree with the comments about OTC Vitamin D, I take 4,000 units a day; 2,000 with my Vitalyte and 2,000 as a straight supplement. My last labs showed a definite improvement in my Vitamin D levels, so at least for me, it's working.

[Cordelia]

Thanks, lmunchkin, for the prayers, you are so sweet!       

Oh boy, so sounds like it really can vary from person to person by the sounds of it. For some it doesn't help one bit and for others it can.

I somehow have a feeling that all the OTC Vitamin D I'll take likely won't do my body any justice  just based on the fact that my levels are stupidly low. Hmmmmmmmm I'll keep all this in mind! lol

When my dietician told me the news, my heart sank. Something else to try and play around with for pills and figure out.     

Anyways, I'm gonna start taking one pill daily starting this Sunday. So, we'll see. I'll try.     

I really, really appreciate all the feedback!       

[lmunchkin]

It is all a balancing act.  The kidney's do so much, that without them, then you have to do it with different drugs.  One month you'll do just fine, but the next month, something can get a little out of whack, thus tweaking it back in to balance!

God Bless,
lmunchkin

[Marina]

I  was  on  Calcitriol   (3 days/week)   and  took  Ergocalciferol  ( Rx  Vit D) 50,000iu 1x/week.

[Cordelia]

What I am currently taking his Calcitriol, daily and Replavite.

[Chris]

I wish I was on Vit D during dialysis and also monitored post transplant until getting a letter after 5 years post transplant to see a bone specialist to monitor bone health.

I was put on prescription strength Vit D because it was so low and now on 1000 IU OTC and Calcium plus Vit D. I have bone issues now, so best that you start taking it before a problem develops.

[Cordelia]

I know it's already affected my teeth likely. My dentist says I have 'soft' teeth. I agree with you completely, I hope its something they can get sorted out now rather than wait.
What I'm really, really curious to know is if this is something that goes away once you get a transplant? Will vit D be absorbed better? Can anyone answer that?

Chris, would you mind sharing with what kind of bone issues you have now? I'm curious to know if you are willing to share (no pressure)

[Chris]

What I'm really, really curious to know is if this is something that goes away once you get a transplant? Will vit D be absorbed better? Can anyone answer that?

I do not know, no one monitored levels and never had lab numbers given while on dialysis to be able to know if absorbtion is better. However I am on Vitamin D probably for the rest of my life, but it was lowered from prescription strength to OTC of 1000 I.U.  My original dose was 100,000 I.U. a month which was just given in a capsule once a month.

Cordelia link=
Chris, would you mind sharing with what kind of bone issues you have now? I'm curious to know if you are willing to share (no pressure)

Even with medications, I am losing density in certain parts of the body. Comparing first DXA scan to second DXA Scan, I gained density, but in third scan bone density is really low in some parts (low on left, but ok on right type) Rest of the things I need to read after doctor visit discharge sheet (wish all doctors did this) that gives further details.

[Cordelia]

Hi Chris. Thanks so much for sharing. What do you mean by the bone density? I've heard that term before but what does it really mean?

[Riverwhispering]

The first time we checked my vitamin D it was 12.9 and my Neph Doc put me on a 6 week mega dose of Vitamin D and it went up to 23.9 then it started working against the Calcitriol so now I'm taking OTC 1,000 IU a day and last time it was checked it was 18

Normal range is 32 - 100

what is everyone's Vitamin D level?  just curious

[Cordelia]

Mine is 15. What kind of 'unit' is it measured in? 15 what?  My dietician told me it's ridiculously low.       

[Riverwhispering]

I don't know, that's what I got off of the lab sheet.  It's interesting that your dietitian and not your Neph is the one telling you what to do.  When I see my Neph he's the one that always adjusts what I take.

The dietitian only told me what limits I should have with the potassium, sodium, phosphorous and animal protein.   

[Chris]

Hi Chris. Thanks so much for sharing. What do you mean by the bone density? I've heard that term before but what does it really mean?

The easiest analogy I can think of is that it's like the candy coating of an M&M candy shell. The thicker it is the better it is (within normal range that is so it is not as brittle and more of a chance of breaking Orrrr, like a Tootsie Pop, the more licks you take to get to the center, the easier it is to bite/ break into the chocolate center.
 
As far as the Vitamin D level, I have to dig out my lab reports. I know I have older ones, but not sure  if it is on the ones the nurse printed out on discharge.

[Cordelia]

Well, here goes. Button down the Hatchet so they say            I took my pill this am so we'll see ....within 24 hrs I should know if I'm gonna react in the bowels                   

[Cordelia]

So I started yesterday on the vitamin D and so far so good. Touch wood.       

I think my dietician told me that if I can tolerate one pill they'll want to up it to two.

[Riverwhispering]

Cordelia how many IU is the Vitamin D you're taking?  That never blocked me up but I think maybe the lack of good fiber does a bit and the Iron supplement.

[Cordelia]

They wanted me to take 1000 UI to start, one pill daily so that's what I took.