Damn PTH

 My labs are all in the car as I type this, and my husband took me car to go to a meeting!

1)  I didn't have an ionized ca done at my five year labs.   I think he did one yesterday though.
2)  My phosphorus was high (can't remember how high) and that concerned him.     Hyperphos, from what I'm getting, is one of the signs that it's turning into tertiary.    He did another test of some type of antibody that I can't remember and had not heard of (which is also in the car with my labs, LOL) that will also give him an idea.
3)  One can absolutely be hypocalcemic with secondary hyperparathyroidism.   Simple vitamin D deficiency can cause that.     Usually though, if it is tertiary, it is hyper, but it's my understanding that prolonged, unrelieved secondary can turn into tertiary if not treated.
4)  BUN was 19 (just a bit high) and creat were normal.   He really stressed to me though, to NEVER let myself get dehydrated.

I'm having a hard time, after pushing all of this D at so many times during the day, wrapping my head around the idea of taking 0.5 ml of calcitriol once a day!    He's starting me out a little low, because one of the risks of the calcitriol is taking the calcium too high, too quickly.   

Definitely good luck with the calcitriol.

Didn't know that about the hyperPTH. 

Does he think high phoshorus could be exacerbating the bone disease?  There are phosphate binders, rx strength that you can take.  That's something you might want to talk to a nephrologist about.  Kidney failure folks have high phosphorus because they can't excrete it.  But I'd be worried about that because it gets "bound" to calcium, which could be worse for you, but some of them have extra calcium in them already...tums is a phosphate binder.

BUN might be high because you might be breaking down body muscle for protein...

I'd be interested to see where all the protein is going.  Is it because you malabsorb?  Or is it absorbed and then disappearing somewhere, like your urine?  I know you've had some problems with edema in the past.

 He suggested I take calcium carbonate with my meals to bind the phosphate.    

Last year, I was able to get my ionized and serum calcium up to a normal range.   As soon as they went up, *poof* so did my protein.    My urine has always tested negative for protein and albumin.   I told the endo about the edema (it still troubles me) and he did not express great concern about it.   Said something about vascular insufficiency that might have occurred pre-op being MO.    I had a doppler scan of both legs and it was negative.   I don't buy it - I think it has something more to do with hormones and fluid balance, but I'm no expert.   In the meantime, I'm adding in a whey shake every day just to be on the safe side.

We didn't even discuss my  hyperoxaluria issues too much at this visit.   He's going to work on all of that when I return in December.     

Such an enigma, Julie.

Oh, and I've been waiting for you to make this post all weekend.  How nerdy ridiculous is that?  LOL

Let us know how the PTH testing comes out.  Did he mention the possibility of a subtotal parathyroidectomy?  I'm learning about it in one of my classes right now.  How do you find out if you need one?

I'm sorry, Kayla, I was going to post earlier this weekend, but just couldn't bring myself to type out all this bad news, LOL.     

We did discuss the possibility of the parathyroidectomy if I have tertiary.   We said that tertiary usually results in HYPERcalcemia and removing the glands causes calcium to drop.   In someone from the bariatric population, we have trouble keeping our calcium maintained as it is, and if they performed surgery and my calcium dropped off the radar screen, in his words, "the results would be devastating."    That's when you get stuff like hungry bone disesae.    So that's a last, last, last resort option.    

I am still hopeful that my zinc and K deficiencies are playing a role in all this, and that fixing them will help with my results.    There is a connection, according to all of the information I've been sent.   I mistakenly took my zinc with my copper.    I was simply not taking enough K.

It ticks me off that my sister, who also has the DS, is taking 10,000 ius of D a day, 2,000 mg of calcium and two multis and her labs are PERFECT.    And for the naysayers who think one needs to be above a normal BMI to have normal labs, she's 5'10 and weighs less than I do!
LOL.

Is your sister premenopausal? Have you gone through menopause? My guess is, this gets much trickier once DS'ers are postmenopausal.

Nope - I'm not even close to being menopausal.   I'm as regular as clockwork, at age 50.  Two years ago, when I had an ultrasound of the pelvis, I still had follicles on my ovaries, LOL.
My mom didn't go through menopause till age 60.   It's a good thing those ol' ovaries are still putting out something, because my osteoporosis would be far worse!

Oh Julie.  I am so so sorry.  I wish you could find one doctor that could help you that you didn't have to train.

I'm swinging everything I've got and will continue to do so until you find the answers you need.

Hugs,

~Becky

 Julie,

I am sorry that the news is not better.  I am always impressed by how educated you are regarding your labs, new studies...You are your best advocate.  Hang in there and I hope to see things turn around. 

I don't have anything to add that hasn't already been said...so I at least want to send some hugs your way!  

Wishing you lots of luck with the Bariatric docs there at U of Mi.  I've had to deal with them a couple times already and they never really seem to understand the DS even when I've given them diagrams and websites.  Do you know if the docs at the Post-Bariatric Metabolism clinic ever do the inpatient rounds?  I hope they are not the same docs.