Julie R.

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I have received many PM's inquiring about how my visit with an endocrinologist from Northwestern University went on Friday.  This is very long, but I am posting this to all so that perhaps others might find my experience helpful.
Let me first preface this post by stating that there has been some comment and speculation that, because I have persistent deficiencies, and because my body weight is low (which it is not for my height) I have in some way been noncompliant, have "body dysmorphia issues" or that I have an eating disorder.  THIS IS IN NO WAY TRUE.   I have been compliant, proactive and involved in my DS experience from the get-go.    I am one of the two percent or so that experience persistent deficiencies despite careful and extensive supplementation.  I eat a healthy, wonderful, varied, full diet.   My BMI is well within the appropriate range for my height, even taking loose skin and other factors into consideration.  I am short in stature and small-boned.  I wear a size 2 because of that, not because I had a certain size in mind and felt that I needed, at all costs,  to reach it.   These issues have been raised to me both in PM's and within other posts, and I find these assertions insulting and offensive.   After I hit an ideal BMI, I called it quits.  My body decided otherwise and settled in at 120-125.  At my exam, fully clothed, I weight 125.9.   I just wanted to get that out there.   The DS is not always a perfect experience for everybody, and although we all want to "pay it forward" and put this surgery in the best light possible (and I have NO REGRETS at all about having my DS!) sometimes problems can arise.    Like I said, I'm a rare bird here, but it can happen.  
Three years ago, pre-ops were not routinely screened for D, so I have no way of knowing whether or not I was deficient going into this.   At one my one-year check-up, my D was low, and I was prescribed a higher dose of D than what I was taking.   I complied and went up to, I think at that time, 10,000 iu a day.   This, of course, was not sufficient, and my D continued to plummet.   By my 18-month check-up, my calcium was at the very low end of normal, and my surgeon realized that perhaps I needed a PTH done.  Duh.  This was high.    I decided on my own to go on 50,000 iu a day and to get a DEXA scan, which came back that I had osteopenia in my spine and osteoporosis in my hips.   Again, independently, I decided to go to an endocrinologist.   At this time, I was also seeing a hematologist for my iron deficiency issues.   Calcium and iron compete with each other, and often, if one is taking calcium, the iron suffers, or vice versa.   I was taking 2400 mg of calcium a day.   The endo ran a 24-hour urine oxalate and calcium test, and it showed that I was not absorbing calcium.   At that time, my serum calcium was low.  Warning here:   when serum calcium levels are low, the damage has already been done.  Do NOT let anyone let you believe otherwise.    That's why it's SO important to look for that D/PTH ratio.    He put me on increasing doses of D and calcium.   At my last set of labs, three weeks ago, despite taking 200,000 a day of dry D and 7,000 mg of calcium a day, my 24-hour urine STILL showed calcium absorption TOO LOW TO QUANTITATE.  My D had dropped from 33 to 29, and my PTH had gone down one whole point from 104 to 103.  
My surgeon at this point offered a revision.  He is a great surgeon, but not an experienced revision surgeon and I really wanted to see about finding the best revision surgeon possible.   I wanted to also make sure I'd left no stone unturned in regard to seeing what I could do with supplementation before having to resort to that.  I am full of adhesions and because I am still within the desired body fat range, I really am not interested in gaining weight and that's the risk with of a revision.      NOTE:  that DOES NOT mean I have body dysmorphia issues.   I would hazard a guess that there are very few three-years-out DS'ers that would feel any differently about the prospect of gaining weight.   If my health crucially depends on it, then I am prepared to have some weight gain.   If I can treat this in other ways, I certainly will.  

After a great deal of research online, I found an endo doc at Northwestern University in Chicago that had coauthorred several papers on malabsorption of micronutrients in post bariatric surgery patients.   My hematologist knew him well and offered to connect us.    He was a very careful thoughtful man, was fascinated by my history and spent 90 minutes with me.   I brought copies of studies and all of my stats and he looked them over minutely.   He admitted that I was pushing the outer ranges of his expertise in regard to calcium absorption,  and he wants to confer with the head of Northwestern's Bone and Mineral Center to further help.  These were the suggestions he made for now:
1)  There does not appear to be a need for an immediate revision at this point, unless he sees some really awful DEXA results, but the fact that I am asymptomatic at this time is good (no bone or muscle pain, good energy, etc.)  or if my D plummets further. 
2)  He was shocked that no one had offered me D injections.   He felt that because this bypasses my gut, this would immediately raise my D, lower my PTH and hopefully then trigger calcium absorption.   If I can get my D and PTH stabilized, I can then go on one of the biophosphates to help with bone loss. 
3)  He also felt that because my weight was stable, that pancreatic enzymes were not indicated until I try the injectable D.    He also suggested that I take all my calcium with dairy.   He stated that there are studies out there that indicate that this facilitates absorption.  
4)  Here's the sad one folks.   He feels that my super low cholesterol (88) indicates that I am absorbing very very little fat, if any, and that my high fat diet is just pushing nutrients right through my body and pulling all of my fat solubles, along with the calcium, right along with it.   My understanding is that calcium binds with fat for absorption.  I might have this wrong, but I think that no fat hanging around means no calcium absorption.   I love my fat - I love my bacon and popcorn with butter.   He suggested I find a healthy balance - still enjoy my nuts, still enjoy full-fat, but that perhaps I should stick with lower fat protein sources to increase my absorption, and to not use fat so liberally. 
5)  My protein is low (5.2) and my albumin is at the lowest range of normal, but he did not feel that I was in a severe protein malnutrition situation that required an immediate revision.   My protein was in the high 5's even pre-op.   He said he'd like to see me continue to push the higher end range of protein, and to try to get it in lower fat sources so that I'd absorb it better and hopefully get that number up again.   I've been shooting for five eggs a day and he agreed that that was a great source of protein, as well as the whey shakes.   He wants me to push for over 150 grams of protein a day.  

I am hoping that his consultation with other doctors will provide us with some more insight into other forms of calcium and their co-factors.  He also mentioned a physician at the University of Chicago who is known worldwide for his calcium metabolism knowledge and that we might want to consider turning to him.  He said I still might end up needing a revision, but that let's try these first.  He said I had a case of "extremely recalcitrant Vitamin D malabsorption."

So, all in all, I came away from this meeting fairly satisfied, but still with lots of questions unanswered.  I felt, however, that my objectives were met in that if he didn't have all of the answers, then that he knew people who did, and to this end, I am hopeful that I'll get the best information possible before deciding what to do in regard to my bone health.