My endocrinologist called-I'm so disappointed and confused

Jupiter6
on 11/15/08 6:12 am - Near Media, Pa- South of Philly, NJ
Julie-- as you know I am in your boat. I haven't had labs since July (will try in the next week or so) but my PTH was very high and I am not absorbing calcium either.

I was referred to a rheumatoligist, not an endocrinologist. She suggested I NOT increase the calcium (I get between 1600-2000 mg a day) because as you intimated, it would not be much better absorbed, and it may overtax my kidneys (I have a history of calcium stones and crystals.) So I upped the D3-- from maybe 7000 IU to 50k IU daily and will re-test. With that and doubling my iron, I can just barely poop these days. GAH!

They would not do a dexascan on me because I was "too young." I will get one anyway soon from my PCP.

I would look for a top notch rheumatologist, and seek another opinion.

Hope you and your bones are okay. We pixie-hairdo-ed D- deficient types gotta look out for one another!

-S.

 "Oh sweet and sour Jesus, that is GOOD!" - Stephen Colbert  Lap RNY 7/07-- Lap Gallbladder 5/08--  
     Emergency Bowel Repair
6/08 -Dr. Meilahn, Temple U.  
 Upper and Lower Bleph/Lower Face Lift 
12/08 
     Fraxel Repair 2/09-- Lower Bleph Re-Do 5/09  -Dr. Pontell, Media PA  Mastopexy/Massive 
     Brachioplasty/ Extended Abdominoplasty 
(plus Mons Lift and Upper Leg lift) / Hernia Repair
      6/24/09 ---Butt Lift and Lateral Thighplasty Scheduled 7/6/10
 - Dr. Ivor Kaplan VA Beach
      
Total Cost: $33,500   Start wt: 368   RNY wt: 300  Goal wt: 150   Current wt: 148.2  BMI: 24.7

Julie R.
on 11/15/08 6:26 am - Ludington, MI
Very interesting news about the rheumatologist, and about the calcium levels.   I guess the biggie test to do is the 24 hour oxalate urine clearance test.  Did you have that done already?   I called him back and told him that I wanted a hard copy of my labs too.   I just sense that I'm a bit out of this guys realm, know what I mean?

You should be able to get a Dexascan if your doctor enters the diagnosis code for "hyperparathyroidism."     He's upped my D3 to 150,000 a day.  I think I'm going to try tanning a couple of days a week too, even though the jury is out as to whether it works or not.

Let's keep up with each about this, okay?
Julie R - Ludington, Michigan
Duodenal Switch 08/09/06 - Dr. Paul Kemmeter, Grand Rapids, Michigan
HW: 282 - 5'4"
SW: 268
GW: 135
CW: 125

Ms Understood
on 11/15/08 6:27 am - NM
Hugs Julie. I am so sorry you are going through this. I hope that vitalady can get you some help.
PattyL
on 11/15/08 6:34 am
Hey Julie!  Sorry you are having problems.  First of all, the 500mg thing is another urban WLS myth.  It just keeps on getting repeated and gaining steam till people believe it and accept it as fact.  Here's how it actually works.  Everyone has X number of calcium receptors in their small gut.  Once all of these have their own molecule of calcium, the rest goes out the poop chute.  How much you can absorb at one time depends on how many receptors you have left.  I don't think any of us know what we've got down there.

Cystic Fibrosis patients have fat malabsorbtion similar to ours.  You may want to mention this to your Endo.  This may help him/her understand fat based D is a waste.  ADEKs were originally developed for CF patients.

Next, start researching calcium apatite.  It is more useful to us than calcium citrate.  Problem is it's very hard to find in the US.  I have been unable to find a reliable source and I've looked off and on for quite a while.  If you can find some, please let me know.
marilyn A.
on 11/15/08 7:30 am - willoughby, OH
DS on 03/17/94
Calcium apatite is available from Metagenics---i think they are in chicago.
Justin
on 11/16/08 3:35 pm - CLEVELAND, OH
Jule, so sorry you're going through this.

In addition to being available from Metagenics (see, their website here) this product, which is calcium from cow bones, is also available from Now Foods online here.  You could also use their store locator to find a store near you.

I chose to stick with Citracal. But, if you're interested it trying this product, I have an unopened bottle of the NOW product I could post to you.
Blogging my Journey... Click to View
             
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marilyn A.
on 11/15/08 7:27 am - willoughby, OH
DS on 03/17/94
Hi Julie,
     I am dealing with some of the same issues. I saw a rheumatologist----she was not much help. She suggested the yearly infusion RECLAST, but was uncertain if we would absorb it. I am a little reluctant to try this as I'm not sure about possible side effects. I've managed to get my vit. d up to 100 with Vitalady's dry d---50,000 a day. Parathyroid is back down and finally got ferritin where it should be. I have also started taking strontium every day....Michelle also carries this. Next step is going to be trying to find an endo who is knowledgeble about wls.  to see what their thought are on Boniva, etc...I'm in northern ohio---so maybe I can let you know if i am able to find someone. 
        Also Metagenics carries the calcium apatite.
Marilyn in ohio
ds i*****
235/140
Julie R.
on 11/15/08 8:11 am - Ludington, MI
Thanks, Marilyn.    What is the strontium for?    My endo said that drugs like Boniva can actually be harmful at this point.    I did get my ferritin down through iron infusions.   In doing some research, I did just discover that iron infusions are preferable for folks dealing with calcium deficiencies, because of the hindrance of absorption between one and the other.    I'll definitely look into the calclium apatite.  Thanks!
Julie R - Ludington, Michigan
Duodenal Switch 08/09/06 - Dr. Paul Kemmeter, Grand Rapids, Michigan
HW: 282 - 5'4"
SW: 268
GW: 135
CW: 125

larra
on 11/15/08 7:37 am - bay area, CA
Julie, I agree with the suggestions already provided, but would also recommend keeping your DS surgeon in the loop. It is very unusual for a compliant DS patient to have this sort of problem, but it does happen. Some (again very few) DS'ers need revisions to lengthen the common channel to improve absorption. I'm not saying you're at that point, but it is a potential option for you. So keep your surgeno informed and see what advice he has to offer.

Larra
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