Damn PTH

Good luck chick. Can I ask what your common channel length is?  Reading about vitamin absorbtion via first pass metabolisim keeps bringing me back to the issue that a very short common channel is disasterous for our uptake.  Maybe the issues is "structural"??

Mine is 100 cc.....so that doesn't explain it.   It's never a sure-fire guarantee that one common channel length is right for all, which is why I think the Hess method is preferable, knowing what I know now.    I know a patient of Anthone's, who does a 250 cc (I think that's it) and she has many of the same issues I have.

Aw **** that sucks. Having to educate ANOTHER doc in the DS is a bummer in its own right. This other stuff is downright freaking scary though :-(.

If I were in your shoes, I'd be begging for an answer to the question of whether or not an intestinal revision would help. And I'd be worried that it would be REQUIRED. *sigh*

I was pleased to finally get some GOOD news on my PTH with the most recent labs. My D went from a whopping 23 to 30 between May and September, even with all the sunshine of MT (in addition to my 100K IU of D daily). I'm pissed about that. However, my PTH went from 65 to 40 in the same period. Methinks perhaps my different kind of calcium might be a bit helpful, but of course there's no way of knowing.

How are you taking the calcitriol?

A revision isn't likely going to help.  If it were simply a D issue, it might, but it's been determined that mine is not as much a D issue, as it is my calcium malabsorption.  I've gotten my D up to a 37, which 35-40 is the range where the PTH starts coming down, and instead, mine is going up.     This doc explained to me that this means it's my calcium malabsorption that is to blame.   Calcium is absorbed way high up in the duodenum, where a limb lengthening doesn't occur.    What I'm really hoping is that my low K and copper levels are coming into play.   Both, from my reading, have a role in calcium homeostasis, and maybe I'm just being wildly optimistic, but maybe getting those levels up will trigger more calcium absorption.    Getting my D up can also do that, and thus the calcitriol.   Husted had, at one point, offered to do an ilieal transposition on me.....that reduces calcium absorption problems, but the last endo I broached that to hit the ROOF when I told him of that option, saying, "They're still testing that on animals, and he wants to do that on YOU?"   I'm not sure if that's true, but based on Husted's rep of late....I backed way off on that one.   

Re the delivery of the calcitriol - it's .5 ml every day.  That's IT.  It's freaking me out to take so little.   I put it under my tongue and let it absorb slowly, sublingually.

What kind of different calcium are you taking?    I was taking hydroxyapatite, and was really loyal to it, because it doesn't cause constipation like citrate does - UNTIL I found out that it can raise my phosphorus levels, and mine are already high (another sign of tertiary HPTH).  The doc doesn't want them to go higher, because it's really dangerous for me, so sadly, I have to give up the hydroxyapatite.

I started a little experiment some months ago (three bottles' worth, however long that's been LOL, with a break for taking my sister's plain old cal cit while in MT) of using Country Life Target-Mins Calcium-magnesium complex.

It's a combo of hydroxyapatite, citrate, aspartate, alpha-ketoglutarate and lysinate. I'm taking 2 grams a day in two doses. Just MIGHT be doing something for me.

Don't get me started on Husted the sociopath. Snarl, end of comment. I really DO have to go do some statistics homework yet this afternoon and ranting about him will be distracting :-p.

What would happen if you got some kind of limb rearrangement then, rather than lengthening? Put more duodenum back in the alimentary tract?

What about the protein malabsorption? That just might be worth of a limb lengthening/change.

I realize you want to leave that option as an absolute last resort, and I would as well, but I'm afraid that you just might wait too long on it. Even though there's no guarantee it would fix stuff, well, there are few if any guarantees in life other than death.

 My low total protein level is probably caused by the low calcium.     It went up last year when I got my calcium up.   The saggy albumin is not severe - only saggy.   That's an easy fix.   I am not in protein malnutrition.

Here's a good explanation, via Husted, of why a traditional revision is not terribly helpful for calcium malabsorption - he also describes his "ileal transposition" which involves an oomenectomy.    Yup - a revison is definitely my last, last, last resort:

Ileal Transposition used as a method of intestinal elongation may be used to treat cases of calcium and iron malabsorption following Duodenal Switch. Unlike a conventional Ileal Transposition, when used in these instances the Ileal Transposition can be performed at the level of the duodenum, without having to re-connect the duodenum, which - after Duodenal Switch - is no small feat. Such "High Duodenal Ileal Transposition" procedures may use only a portion of the alimentary limb to accomplish the transposition, using the remainder of the alimentary limb for a "Parallel Ileal Transposition" at the level of the biliopancreatic limb, which is at that point incorporated back into the flow of food as a result of the High Duodenal Ileal Transposition performed upstream. This approach allows restoration of calcium and iron absorption without having to completely reverse the Duodenal Switch procedure.

 Julie, my MIL developed this same issue, but not due to bariatric surgery.  She ended up having all of her parathyroid glands removed.  Is this even an option???

That's usually a different kind of hyperparathyroidism, called primary hyperparathyroidism.    It's usually caused by a benign tumor on the parathyroid gland.    Renal patients also develop problems with their parathyroids too.   There is a slim chance that I could have had a preexisting condition that has caused this, as well.  The doctor ran a couple more tests on my Monday to determine a bit more.