--- In apeced@yahoogroups.com, Dede Leydorf <dleydorf@...> wrote:
>Hi Dede,

I am sorry to hear about your kidneys after all these years of trusting what
your doctor told you. It is so difficult to know what it best for us. We visited
Dr. Winer at the NIH two years ago and she told my son to take 500mg of calcium
four times a day. WE told his endo in Houston, she reluctantly agreed, and has
slowly raised his dose since then. I am nervous now, since my son had a seizure
in the hospital possibly due to low calcium. Currently We are not sure what dose
is right for him.

Thanks for sharing your story, Take care, Vicki
> I think it is important to listen to our doctors. But, I want to share my
experience with calcium. I have had hypoparathyroidism since age of 9. My
doctors for years had me on very high dosage, about (8) 600mg pills a day or so
for years. It may have been that more was needed during my growth years. But, I
remained on that level until my mid-twenties when I started to experience the
early stages of kidney failure. Yet, the endocrinologist I was with was
unalarmed by my tests and kept me at the dose. Finally, in my mid 30s I went to
ucsf, and the director of endocrinology was agast at the level of calcium I was
taking and reduced my intake down to about one third of this to about 1500 per
day. The doctors I consulted said that all the body can absorb is 1500 max day,
no matter how much you injest, and the rest is just more work for the kidneys. I
was terribly ill for about a year during this process of taking less as my body
had to adjust to this new
> level. But, after I adjusted, I felt much better with more energy. The damage
to my kidneys however, is permanent. I now take 1000 mg a day since my doctors
are concerned for my kidneys and want to make them last. But, long story short,
live in Europe, and feel fine and in fact better on this dose, but they check my
kidneys regularly and it worries me. I did not need that load all those years
after adolescence was necessary, and it is questionable if i needed it in my
youth either. I am making restitution with my kidneys, now and watching and
waiting. 
> --- En date de : Sam 6.6.09, Orange, Jennifer <jorange@...> a écrit :
>
> De: Orange, Jennifer <jorange@...>
> Objet: Re: [apeced] Concerned
> À: apeced@yahoogroups.com
> Date: Samedi 6 Juin 2009, 16h30
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
> Wow, that's a lot of calcium. When doctors have made changes with Julia's
calcium and calcitriol too quickly she has been affected. I would ask for daily
bloodwork to make sure his calcium levels don't change too quickly. Good luck!
> Jennifer
> Jennifer Orange
> Torys LLP
>
>
> From: apeced@yahoogroups. com
> To: apeced@yahoogroups. com
> Sent: Sat Jun 06 10:26:02 2009
> Subject: [apeced] Concerned
>
>
>
>
>
>
>
> Hi,
>
>
>
> My son was released Wed after two days in the hospital with low calcium &
potassium. His endo is out of town but another endo saw my son and put him on
double dose of calcitriol(4 -.25 per day) plus 4000-6000 mg of calcium. I am
very nervous about him absorbing too much calcium. Any thoughts?
>
>
>
> Thanks, Vicki
>
>
>
>
>
>
>
>
>
>
>
>
>
>
> This email and any attachments are for the sole use of the intended recipients
and may be privileged or confidential. Any distribution, printing or other use
by anyone else is prohibited. If you are not an intended recipient, please
contact the sender immediately, and permanently delete this email and
attachments.
>