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Author Topic: Question about vitamin D  (Read 2800 times)
joyfulmother
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« on: June 20, 2009, 07:17:44 AM »

I've been reading this article about vitamin D and CKD.  Like a lot of kidney patients, I am taking a Vitamin D3 supplement and I understand why.  I know that getting some sunshine will just help me in general, because we all need a little sunshine.  What my little pea brain can't comprehend by reading this article is, will getting sunshine help me get some of the VitaminD that I need to help my PTH?  Does that make sense?  Does anyone know?
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Becky
44 years old, Christian, homeschooling mom to my boys, ages 7 & 9.
- PD Patient beginning 12/31/08
- Listed on September, 2009
- Transplant on March 28, 2010
dwcrawford
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« Reply #1 on: June 20, 2009, 07:49:12 AM »

Dr O, my nephrologist, made a comment about me getting a little tanned and asked if I'd been to the beach.  I said no, just sitting on the deck trying to get some free Vit. D.  He laughed and said to his assistant, "see,  I told you this guy was on the ball."

Bottom line, I doubt it will help but it won't hurt.  Better to take a supplement so you, they, can determine exactly how  muuch....
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Nothing that I post here is intended for fact but rather for exploration into my personal thought processes.  Any slight, use of words with multiple connotations or other percieved insults are totally unintended.  I reserve my insults for private.
RightSide
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« Reply #2 on: June 20, 2009, 08:55:39 PM »

This is a complicated story; it's where your neph says "Harrumph, it works like this...." and then proceeds to talk for an hour.   ;D

I'm not a neph, but I'll try to explain it.  Harrumph, it works like this:   ;D

Years ago, OTC vitamin preparations often contained vitamin D2.

Then it was found that vitamin D3 appeared to perform the same general functions that vitamin D2 could do, but was three times as potent and had a longer shelf life.  As a result, manufacturers of OTC vitamin pills began to reformulate their preparations to include D3 instead of D2

Vitamin D3, whether it is found in modern OTC vitamin preparations or in your skin produced via UV light, is in an inactive form, and won't be recognized by your parathyroid glands.  This inactive form is processed, once by the liver, and again by the kidneys, to convert it to the active form of vitamin D3.  That's the form that your parathyroid glands will respond to--and lower your PTH accordingly.  But for us ESRD patients, our damaged kidneys can't perform that final activation step on the vitamin D3 molecule, so it remains in an inactive state, and hence cannot affect our PTH. 

Zemplar is a prescription med that is already activated vitamin D3. That's what I take to lower my PTH. 

At least, that was the type of story you would have gotten from your neph as recently as a few years ago.

But very recently, there is new evidence that vitamin D2, which is metabolized through a different pathway than D3, may also play a useful and different role in the body from D3 after all.  My nutritionist and neph, always interested in pushing the state of the art if we patients are agreeable, tested my serum D2 level.  Sure enough, it was quite low, despite months and months of Zemplar.  As a result, I now take prescription vitamin D2 by mouth (50,000 units once a week), in addition to the Zemplar IV during dialysis which gives me the activated vitamin D3.

An upcoming AAKP Conference Call is going to discuss the whole Vitamin D business.  I posted details to the "News Articles" section.

Hope this helps.
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willowtreewren
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« Reply #3 on: June 21, 2009, 05:52:29 AM »

Thanks for that explanation. Last week my husband's GP told him that Vitamin D has been shown to reduce mortality by 17%.

Hmmm.

Aleta
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dwcrawford
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« Reply #4 on: June 21, 2009, 06:08:16 AM »

You are not a neph, rightside, but you must be in internal medicine.  How else could you afford Zemplar for several months.  I took it for a few months until I went broke and he, the neph, said he'd give me calictrol instead as long as pth stayed normal.  It did until dialysis and then i stopped calictrol.  Whew. 

This dialysis stuff really sucks, but it does something right doesn't it?

Had not seen my internist since starting dialysis until last week.  I had told him I wasn't going to do it, dialysis, but he and the neph had talked so she knew.  He walks in, smiles really big, then gives me a bear hug.  He said I can't believe how good you look then he throws out some long jewish words that made me laugh.  I hate dialysis, but life is getting better (just how do I get through those four hours and all those needles).
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Come to think of it, nothing is funny anymore.

Nothing that I post here is intended for fact but rather for exploration into my personal thought processes.  Any slight, use of words with multiple connotations or other percieved insults are totally unintended.  I reserve my insults for private.
RightSide
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« Reply #5 on: June 21, 2009, 12:01:19 PM »

Thanks for that explanation. Last week my husband's GP told him that Vitamin D has been shown to reduce mortality by 17%.
Perhaps due to its boosting effect on the immune system.

Before the 20th century, affluent folks who caught tuberculosis or other respiratory infections, would "take the cure"--they would visit a health spa in a warm climate and sunbathe for days on end.  And often the infection would go away.  We now know that the reason why sunshine helps someone (with normal kidneys and liver) get over an infection is that skin exposed to UV light makes Vitamin D, which boosts the immune system.
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« Reply #6 on: June 21, 2009, 01:55:30 PM »

It also helps that those health spas had clean, fresh water. It was a major step up from the water even the affluent had in urban areas. Getting rehydrated with clean water helped their immune systems too.
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RightSide
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« Reply #7 on: June 25, 2009, 09:09:10 PM »

So today, the AAKP had their telephone Conference Call on the subject of Vitamin D.  The guest speaker was Dr. Daniel Coyne of the Renal Division at Washington University in St. Louis.

Most of what he talked about can already be found on Wikipedia.  But the latest results of his own research aren't yet there, and are worth mentioning:

As I said before, the conventional wisdom has been that since the kidneys activate vitamin D3 so it can be used by various organs of the body, taking ordinary inactive vitamin D  in pills wouldn't be useful to us ESRD patients, since our damaged kidneys can't activate it for use.  Instead, we ESRD patients take such analogues of activated vitamin D as Zemplar and Hectorol.  Being in active form already, they can go to work to help lower PTH and strengthen our bones.

But now, research by Dr. Coyne and others suggests that even the inactivated form of vitamin D (such as ergocalciferol) may be of benefit.  Apparently there is another pathway to use vitamin D that wasn't known about before.  Tiny amounts of vitamin D are being activated by individual cells in such organs as the heart and bone marrow, bypassing the usual activation process in the kidneys.  This vitamin D is activated by these cells for their own immediate use, a process called autocrine signaling.  Or a cell may activate vitamin D for use by its immediate neighbors in that tissue, a process called paracrine signaling.  (You can google to learn more about those processes.)

As a result, Dr. Coyne has found that ESRD patients on dialysis who are already on Zemplar are benefiting by taking oral vitamin D as well.  Their anemia has improved, for example, to the point that they need less Epogen to keep their blood count in the normal range.

How to tell if you need oral vitamin D in addition to Zemplar or Hectorol?  Ask your neph to test your blood for vitamin D.  If it's low, you may benefit from taking oral vitamin D as well.

That was my situation.  My serum vitamin D level was low despite being on Zemplar for 6 months.  So now I'm also taking oral vitamin D; 25,000 units a week.  While keeping my Zemplar dose the same.

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joyfulmother
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« Reply #8 on: June 26, 2009, 05:31:35 AM »

So can getting in the sunshine help me at all?
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Becky
44 years old, Christian, homeschooling mom to my boys, ages 7 & 9.
- PD Patient beginning 12/31/08
- Listed on September, 2009
- Transplant on March 28, 2010
willowtreewren
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« Reply #9 on: June 26, 2009, 05:50:29 AM »

Hi, Rightside.

We talked with the nutritionist at the clinic yesterday and she gave us the same info about the cellular activation of the Vit D. Her comment was that my husband's MD must be pretty sharp (she is).

The nutritionist commented that one thing to watch with Vit D supplements is that the calcium may get too high. She also mentioned that Hectorol is VERY expensive and doesn't have a coupon like Sensipar for lowering PTH.

Thanks for keeping us informed.

Aleta
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
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