Kidney Patient Guide

Hi everyone,
I am very confused and a bit disappointed...I was to have parathyroid surgery and then went to my nephrologist Wed. and he has said that I do not need the operation! He explained to me that since I take Dilantin for seizures, that has helped make my parathyroid levels, alkaline phosphates, etc. all out of whack. He has told me to take 200 I.U. of vitamin D and calcium (Caltrate D) 3 times a day in addition to my 0.25mcg of Calcitriol. He will also confer with my neurologist about changing my seizure medication. My blood work will be checked in another 2 weeks to see if this has helped me at all.
My transplant doc was the one who told me I needed this surgery and that medication was not an option. I am wondering who is correct and also about the side effects of too much Vitamin D (I am SICK of side effects from meds! ) I have been trying to find out the symptoms of Vitamin D toxicity on the web but without much luck. This wouldn't be the first time that the doctors have gotten it wrong or not even conferred with each other, so naturally I am a bit upset and worried. I called the txplant surgeon's office and his nurse said if the neph was treating me with the meds, okay.
Needless to say, I am extremely confused! Does anyone have any advice or opinions on Vitamin D and its effects? Does anyone have any experiences with it? THANK YOU so much for any replies...I am wondering what to do at this point.
-Pam

Hello Pam,

I was the same. I was booked to have my parathyroid glands removed. My consultant said my bones would be like chalk, very reassuring!

Anyway, about two weeks before he said not to worry everything is now OK. He did say about the vit D and said he would prefer for me to get is through diet rather than supplements. And that was that never heard anything else on the matter. I know we are all different but maybe natural sources may be better?

Good luck!

PS: I dont know about disappointed, I was relieved not to have the
operation

Side effects of Vit D overdose/toxicity

[quote] http://www.anyvitamins.com/vitamin-d-info.htm
Having too much vitamin D in your system could leave a too elevated calcium level, a lower appetite, increased thirst, nausea, vomiting, drowsiness, abdominal pain[/quote]


[quote] http://www.ext.nodak.edu/extpubs/yf/foods/he158w.htm
Loss of appetite, nausea headache, excessive urination, diarrhea or constipation, weakness, fatigue, kidney damage from calcium deposits, injury to arterial walls, high blood pressure, elevated blood cholesterol and mental depression. [/quote]

[quote] http://icare4u.com/Nu0029.htm#How%20muc ... itamin%20D?
Excess vitamin D is toxic

Nausea
Weakness
Irritability [/quote]

200 IU is about 5 µg which *I think* is the RDA roughly.
Unfortunately my doc had me on about 30 - 40 µg which didn't make me feel at all well
The problem with PTH levels is they are very hard to regain control of once they snowball past a certain point..

I've had a parathroidectomy and it does seem to have made a difference to my figures.. it isn't a huge op, but like all carries some risk.

Good luck.

Thanks to both of you! I was told today that I will be put on another anti-seizure med and hopefully that, with the Vit D, will get my numbers back on track. I think they put me on the supplements because of how high my labs were and they want to get them down quicker... I was disappointed because I was looking forward to feeling better soon after the op...I guess I will have to have some patience and wait to see if this works in the meantime.
Thank you, JMan, for the resources on Vitamin D...I am hoping that it works and doesn't cause any problems. Did you have your PT surgery before or after your transplant and did it help you (symptom-wise)? Thanks again guys!
-Pam

Just before, my transplant as cadavaric so obviously I didn't know when it was gonna happen. It IS an op best avoided by dietary action BEFORE your PTH rises. However once done it does seem to do the trick. It does mean you will be on calcium supplements forever though (no big deal).

I can PM you some more stuff on the actual op later if you wish. Only reason I had effects from the Vit D I think is that I was effectivly overdosed with it (unintentionally). And I am fine now I am back to a normal dose, although somewhat P'd off with my renal unit, understandably