My endocrinologist called-I'm so disappointed and confused

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,

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

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

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

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. [email protected]

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.

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

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

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)))

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.

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.