Dexa newb

[bearmom]

Liz, if this is not the right forum for a dexa question, please move it to wherever.


For newer peeps here, it is best to get a baseline dexa prior to your DS if at all possible.


I finally had my second DEXA. My first, which I had to really fight for was in 2011, 3 years after my DS. So now some levels to compare.

So, they sent the results and said "all is wonderful" on the phone, but I don't read the report that way. It says;

"FINDINGS: Bone mineral density in the lumbar spine between L1 and L3 corresponds to a young adult T-score of 0.9 (1.116 g/cm2, Z-score equals 1.7). Rate of change -7.9%.

Bone mineral density within the left radius corresponds to a young adult with a T-score of -0.7 (0.544 g/cm2, Z-score equals 0.1) Rate of change -2.2%"

They say I'm normal according to WHO criteria and there is no increased fracture risk compared to age matched controls, but what I'm looking at is the rate of change, which looks like a lot for someone that takes craploads of calcium all day long. I take even more than the average DSer due to kidney stone issues that predated my DS, so 6000iu a day of calcium is my base to combat that.

I need to read more about this, but are there any DEXA smartipants that know what the acceptable rate of loss is? It looks to me like I started with sturdy bones, but that will be changing if I don't level out the rate of loss.

 

[aaa]

You're right, it's great to have a Dexa Bone Density scan, preop, as you then have a great basis for comparison, postop.

Have you met with an osteo. specialist/endocrinologist to go over the results yet? Also, did you go to the same place? It's always a good idea so the readings are consistent.

Along with the scan, have you had your bloods done (which show bone turnover)? These are equally important and sometimes more important than the scan itself.

 

[bearmom]

It was actually the endo that I got the scan through, as my insurance didn't want to cover them prior to turning 50, and then still didn't want to. It was not the same place as in 2011, so I took the earlier results in so they could be added to the system and compared. The endo just see's the base reading and says I'm great. I think that's only due to previously sturdy bones, and am concerned about the declining %. I'm glad that I still have decent bone mass, but just really want to keep it that way.

My labs were mostly fine, with the same issues that I keep adjusting which are stubborn low vitamin d, and PTH still higher than I'd like. I'm up to 250k of vitamin D daily. I've already added many of the other things that assist calcium(more magnesium, strontium, silica), but haven't changed the calcium itself yet. Since I take all calcium with foods for kidney stones, I'm sure most of it binds to other things and gets pooped out (which is sort of the point for calcium oxalate stones and fat malabsorbers) and am wondering if I should add a night dose of mcha or something with out a lot in the stomach.

 

[Spiky Bugger]

Liz, if this is not the right forum for a dexa question, please move it to wherever.


For newer peeps here, it is best to get a baseline dexa prior to your DS if at all possible.


I finally had my second DEXA. My first, which I had to really fight for was in 2011, 3 years after my DS. So now some levels to compare.

So, they sent the results and said "all is wonderful" on the phone, but I don't read the report that way. It says;

"FINDINGS: Bone mineral density in the lumbar spine between L1 and L3 corresponds to a young adult T-score of 0.9 (1.116 g/cm2, Z-score equals 1.7). Rate of change -7.9%.

Bone mineral density within the left radius corresponds to a young adult with a T-score of -0.7 (0.544 g/cm2, Z-score equals 0.1) Rate of change -2.2%"

They say I'm normal according to WHO criteria and there is no increased fracture risk compared to age matched controls, but what I'm looking at is the rate of change, which looks like a lot for someone that takes craploads of calcium all day long. I take even more than the average DSer due to kidney stone issues that predated my DS, so 6000iu a day of calcium is my base to combat that.

I need to read more about this, but are there any DEXA smartipants that know what the acceptable rate of loss is? It looks to me like I started with sturdy bones, but that will be changing if I don't level out the rate of loss.

But...you are also five years older, right? It is good to monitor all this stuff, but keep in mind that we are compared to 26-year-olds.

 

[bearmom]

But...you are also five years older, right? It is good to monitor all this stuff, but keep in mind that we are compared to 26-year-olds.

I thought just the T score compared to a 26 yo, but the Z score was peers? Yes, 5 years older, so maybe a decline of 7.8% over that span isn't as big of a deal.

This endo is sort of "meh" about things that freak me out, like a vitamin d level of 6 (not currently, but when I first met her), so maybe I'm being paranoid about the dexa numbers.

 

[swimbikerun]

I disagree. I think that it should be followed more. All they are doing is comparing you to others, but those others probably don't have the surgery you do. That's where physicians need to take these things into context.

I am in a very dangerously high risk for bone issues. I've been monitored and will be every year whether I'm 50 or not. That is *prudent* and common sense smart based on my risk factors. That is what the doctor should look at.

 

[DSRIGGS]

You're right, it's great to have a Dexa Bone Density scan, preop, as you then have a great basis for comparison, postop.

Have you met with an osteo. specialist/endocrinologist to go over the results yet? Also, did you go to the same place? It's always a good idea so the readings are consistent.

Along with the scan, have you had your bloods done (which show bone turnover)? These are equally important and sometimes more important than the scan itself.

Hi Hon... Which test blood test measures bone turnover? I am a guy so I think that I have a bigger cushion when it comes bone health as it is my understanding that men have stronger/better bone health than ladies... But obviously as a DSr I want to stay on top of the sheets as well. My shins feel fragile to me but that could just be in my head.

 

[southernlady]

You do realize there are uncontrollable risk factors that simply can not be changed?

While our malabsorption is a factor, age, sex, genetics can NOT be changed.

Most of us only find out about a lousy D and (probably high PTH) as a result of having the DS. And pre-op damage can be done as well by having that three legged stool of calcium/D/PTH out of whack. I know I was tested for D in 2007 but it wasn't until 2011 that anyone tested my PTH. I was probably making a mess of my bones for DECADES.

Take a deep breath and keep a close eye on your own health. IF you can get a bone scan yearly do so but most insurance companies (Esp Medicare) say every 2 years "unless medically necessary" and just having osteoporosis AND the DS doesn't seem to override that mandate with many doctors.

 

[aaa]

I disagree. I think that it should be followed more. All they are doing is comparing you to others, but those others probably don't have the surgery you do. That's where physicians need to take these things into context.

I am in a very dangerously high risk for bone issues. I've been monitored and will be every year whether I'm 50 or not. That is *prudent* and common sense smart based on my risk factors. That is what the doctor should look at.

I agree. I wasn't 50 when I had my first Dexa. Once I had the DS my surgical team and DS nutrit. said I had to get it done.

 

[aaa]

Hi Hon... Which test blood test measures bone turnover? I am a guy so I think that I have a bigger cushion when it comes bone health as it is my understanding that men have stronger/better bone health than ladies... But obviously as a DSr I want to stay on top of the sheets as well. My shins feel fragile to me but that could just be in my head.

I believe it's these 2 tests (sorry for the caps, however, I pulled them right from the .pdf Rx). These are the ones my osteo. specialist was quite happy with regarding my bone turnover. It seemed to confirm the Reclast Infusions were helping and that along with even more calcium (she recommended) have let me go rib fracture free since 3/15, thankfully. So far, so good.):

1. COL. I C-TELOPEP CTX;
2. ALKALINE PHOSPHATASE-BONE SPECIFIC.