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Julie R.
Ludington, MI
Member Since: 06/17/06
[Latest Posts]

Many of you know that I've been struggling with my Vitamin D levels from about nine months out.     When a recent Dexascan came back as showing me to be osteopenic, my ob-gyn decided the best course of action was to send me to an endocrinologist.   I saw him a month ago, and he gave me the pretty encouraging news that he figured most of this was reversible and correctable.   He ordered a bunch of lab tests and told me he'd personally take a look at the Dexa and the lab results and give me a call.      He called yesterday to inform me that my results were "striking."   I do not have osteopenia, I have full-blown osteoporosis in my hips.    My 24-hour urine clearance indicated that I am excreting zero calcium, and that I have hyperoxaluria - excessive oxalate in the urine.  He told me that can not just lead to kidney stone formation, but kidney failure as well.   Also, two months after increasing my dry D from 50 k IU to 100 k iu, my D levels went from a 24 to a 25, and my PTH levels have not gone down at all.     This is the part that has me so disappointed - I really thought I had this matter taken care of.

Now for the confusing part.    He told me he wants me to increase my calcium from 2,400 mg to 5,000 mg, or more, and that I should take it with my meals to increase my absorption.   That means I'm taking 1,950 mg with my meals.....and this doesn't make sense after reading that one only absorbs 500 mg at a time.   My thoughts are that I'm going to take less, every time I eat, as I eat all the time anyway.   I am concerned about getting constipated with that much calcium, but he said to add magnesium.  So.....mag oxide or citrate??    He also told me he wanted to up my D to 150,000 k iu a day, and would call in a prescription.   I told him the prescription kind was packed in oil, and he seemed unconcerned.   I explained my situation to the pharmacist, and she reiterated what I knew - that if you only absorb 20% of fats, you're only going to absorb 20% of the D.    I was hoping to get the D by prescription because of the expense....I'd be able to get it for $5 if I had a script for it.    I am going to be retested in one month and again in two months.    He also told me that at this time it could be dangerous for me to begin on any of the osteoporosis drugs like Boniva.

I think that I need to find an endocrinologist that specializes more in vitamin and mineral deficiencies.   I know that there is one down in Detroit that is a vitamin D deficiency specialist.   I'm very worried about this.   At 47, I am far too young to have osteoporosis and I'm really concerned about the long-term ramifications.    If anybody has faced a similar situation, please help me out here!
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

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Kennedy12
Chicago, IL
Duodenal Switch (12/11/00)
Member Since: 10/28/00
[Latest Posts]

Julie,

I don't have any advise, just a big (((((hug))))) for you. I'm so sorry to hear this. I think your plan to see a endo that specializes in vitamin issues is a good plan. I hope someone will be by that can offer some advise based on personal experience!!

Jillian
Phase 1 Plastic Surgery Completed 9/9/09 with Dr. Siamak Agha.
        
         

 
 
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newlife4nina
Duodenal Switch (10/15/08)
Member Since: 05/18/08
[Latest Posts]

get in touch with vitalady ASAP! i believe she has personal experience with osteo issues - best of luck...

Nina ~~   BMI was 52, now 26.8. From size 26/28 to 8-10 pants and 2xl/24 shirt to xs/sm shirts. SW/CW/surgeanGW/mynew GW 322/159/180/154     I Heart MY DS!!

        
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MarciaJ
near London, Canada
Duodenal Switch (09/28/07)
Member Since: 06/07/07
[Latest Posts]

I think your instincts around finding an endochrinologist who specializes in vitamin deficiencies is definitely on target.  It is very scarey to feel like you're just being "experimented" on or that someone is figuring things out with you rather than based upon knowledge with other patients.  I think being in contact with VitaLady is good advice too. 

I just had my baseline Bone Mineral Density scans yesterday (follow up on my arm, because at my pre-test I was too big for the machine) and my hip/spine baseline.  I can't stress how important it is to have these tests done regularly.  (For all of those in Ontario, you need to have your PCP outline that you have a "malabsorption syndrome" to get through the new rules around not having annual screening without meeting certain criteria - PM if you have any questions)

*big hug*

Marcia

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deactivated member

I did a quick search on PubMed and found this article:

Cleve Clin J Med. 2008 May;75(5):333-4, 336, 338 passim. Links
 

Perioperative management of bariatric surgery patients: focus on metabolic bone disease.

Williams SE, Cooper K, Richmond B, Schauer P.

Center for Nutrition and Metabolic Medicine, Greene Memorial Hospital Advanced Medical Group, Xenia, OH 45385, USA. swilliams@greenehealth.org

Chronic vitamin D deficiency, inadequate calcium intake, and secondary hyperparathyroidism are common in obese individuals, placing them at risk for low bone mass and metabolic bone disease. After bariatric surgery, they are at even higher risk, owing to malabsorption and decreased oral intake. Meticulous preoperative screening, judicious use of vitamin and mineral supplements, addressing modifiable risk factors, and monitoring the absorption of key nutrients postoperatively are essential in preventing metabolic bone disease in bariatric surgery patients.


I would email Dr. Williams, explain your situation and ask for a referral to an endocrinologist near you whom he thinks is sufficiently informed to treat your medical needs.

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Julie R.
Ludington, MI
Member Since: 06/17/06
[Latest Posts]

Thank you, Diana, for finding this.     I will compose an email to him tomorrow evening.
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

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S. B.
Canada
Duodenal Switch (01/24/07)
Member Since: 10/26/06
[Latest Posts]

Hi Julie,
I am so sorry to hear that. I really don't have much advice to offer.

It sounds like your Dr. is recommending calcium and vitamin D (megadoses). (DUH - I know. I'm just processing it "outloud") The challenge is to get them in. Your idea of taking calcium every time you eat is a good one. 1000 mg 5 times a day would do it. 500 mg 10 times just seems unmanageable. Vitamin D - do they prescribe the dry version, and in the higher dosage you need?

I can see why he would say no osteoporosis drugs - they break down the bones and then rebuild them. Your hip bones are probably too fragile right now. Do you have any activity restrictions? Weight bearing exercises are good, but you don't want to be taking any tumbles.

What about the oxalates and kidneys? Did he have any recommendations? Other than recommending fluids, I don't know enough about this to offer any suggestions.

Sorry I can't be of much help.
SherryB

    
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1MoreChance
AL
Duodenal Switch (07/16/08)
Member Since: 07/24/07
[Latest Posts]

Oh Julie, I'm so sorry to hear you are having these problems.  I hope you can get the help you need.  It is scary to know that most of our doctors don't really know how to treat us with our bodies working differently than what they have learned to work with.  Have you discussed this with the doc. that did your surgery?  Will he/she talk to your endo. to help with how they should treat you? 
I too, think you are on the right track finding these specialist doctors.  Maybe Vitalady can help you out.  I hope she posts her expertiese here so I can save it in my files for future reference (just in case).  Please keep us posted.  (((HUGS)))

Ronnie HW~205/SW~191/CW~119/GW~120-115

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Guate Wife
Grand Rapids, MI
Duodenal Switch (12/13/07)
Member Since: 02/05/08
[Latest Posts]


Hey Julie,

Well, this post just had me gulp down some calcium!
This sucks!  I'm glad that you are on top of it though, and not just 'taking orders'.  Your instincts are correct -- he is not caring for you properly.  I would definitely follow Diana's suggestion, and get in touch with the lead author of that study.  And, he is just in OH, and this really would be worth the road trip of he were to suggest that seeing you would be the best course of treatment.  We can't be messing with fragile bones in the Winter Wonderland!

The price of all our supplements can certainly add up, but keep in mind that the extra D will only be about 25 cents a day -- you are worth that!  I don't like that the doc didn't listen to you when you said you wouldn't absorb the oil based D -- he isn't worth seeing again.

       ~ I am the proud wife of a Guatemalan, but most people call me Kimberley
Highest Known Weight  =  370#  /  59.7 bmi  @  5'6"

Current Weight  =  168#  /  26.4 bmi  :  fluctuates 5# either way  @  5'7"  /  more than 90% EWL
Normal BMI (24.9)  =  159#:  would have to compromise my muscle mass to get here without plastics, so this is not a goal.


I   my DS.    Don't go into WLS without knowing ALL of your options:  DSFacts.com

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Julie R.
Ludington, MI
Member Since: 06/17/06
[Latest Posts]

Yeah, he's in the MMPC group, and although a nice fella, and knowledgeable that the DS is a more malabsorptive procedure, seems to be more geared to dealing with diabetes patients than post WLS ones with metabolic bone disease!   I just noticed that the Cleveland Clinic has a Center for Metabolic Bone Disease, and I'm going to see if perhaps U of M has one as well.
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

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Jupiter6
Near Media, Pa- South of Philly, NJ
Member Since: 11/16/03
[Latest Posts]

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

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Julie R.
Ludington, MI
Member Since: 06/17/06
[Latest Posts]

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

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Ms Understood
NM
Duodenal Switch (09/23/08)
Member Since: 09/17/02
[Latest Posts]

Hugs Julie. I am so sorry you are going through this. I hope that vitalady can get you some help.
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PattyL
Duodenal Switch (08/14/03)
Member Since: 07/11/03
[Latest Posts]

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.
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marilyn A.
willoughby, OH
Duodenal Switch (03/17/94)
Member Since: 09/28/05
[Latest Posts]

Calcium apatite is available from Metagenics---i think they are in chicago.
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Justin
CLEVELAND, OH
Duodenal Switch (05/20/08)
Member Since: 02/18/08
[Latest Posts]

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
             
Get the FACTS about the Duodenal Switch at www.DSFACTS.com
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marilyn A.
willoughby, OH
Duodenal Switch (03/17/94)
Member Since: 09/28/05
[Latest Posts]

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
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Julie R.
Ludington, MI
Member Since: 06/17/06
[Latest Posts]

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

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larra
bay area, CA
Member Since: 01/07/05
[Latest Posts]

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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