Osteoporosis and Petite Women

Posted by njhornung @normahorn, May 16, 2023

The form I completed before going to an osteoporosis clinic asked if I weigh less than 127 pounds. That magic figure supposedly puts one at greater risk. The Endocrinologist I saw commented on how petite I am and asked if I have always been petite. While for a few years my weight was a little higher I am now back to around 100 lbs. Can't get back to my 21" waist, though.

Searching the literature, it seems that being petite is associated with higher T scores and not just post menopausal
Supposedly DEXA takes this into account when height and weight are entered into the software. However, one could be short and have heavy bones or be small boned. The old weight charts at doctor's offices used to take that into consideration. Does anyone have knowledge that DEXA truly adjusts for structure and the high scores are not an artifact of the technique? There is less bone for the xrays to penetrate which could be interpreted as the bone being less dense. Does density determine quality?

I am at the point of not pursuing treatment until I get a better handle on what my risk truly is. My only fractures were a clean break to an ankle when I slipped on ice and a finger playing touch football. Both were many years ago.

Any insight to offer?

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@ans

You are soooo right!!!! Thought I was golden when I fell off my chair realizing there were 3 places in my close geographic area. Only then to be sooo disappointed to find one place said , yes we have that but we don’t use it. - that was at a drs office so I moved onto a large creditable hospital that was also listed. I had to eventually get connected to the imaging lab to inquire as those on the general phone knew nothing of this at all. When I spoke to a person that actually does imaging there , her respond was again we do have that (the TBS) but our drs have made the decision not to use it. I couldn’t believe my ears. I asked why and she couldn’t tell me the answer. I asked her to please ask the question and to call me back. I’ve never heard from her. Then one last lab to try. This one further , but still easily doable. An hour away.
I had a phone number and tried for half a day to get to the correct people. Such a run around I finally gave up. Then a few weeks ago I decided to drive to the address so I could find someone to talk to directly. I got there and asked if they did the DEXA WITH THE TBS. She had no idea. Waited for the lab worker in between pts. I asked her , of which she said , “I don’t know”…. I’m thinking is this possible???? Then she said , “you know yesterday I did a DEXA and the read out was different. Let me go check”
She came back to say yes the extra read out was a TBS. She explained as a lab person you just run the test as you’re told and that’s it. Crazy!!!! Anyway, she was excellent… I explained I had a DEXA scheduled in 3 weeks and would like to cancel that one and have one with the TBS. She set up an apppointment with me on the spot and last week I had it. Gave me the read out and an extra copy for when I meet with Dr McCormick in August. The lab worker did in conversation tell me that they have the most up to date machine to do DEXA’s in the whole area. Glad I persisted!!! However, as I also found out , I could have called that phone forever and never got them as it’s hooked up through the hospital somehow and calls are not put through to the lab at all. SO just know you may need to SPEND TIME to really make this happen!!!

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I’m glad you were persistent. Have you had the DEXA w/ TBS yet? If, yes, what were your results?

I had a DEXA w/ TBS in December 2022 and I have yet to find anyone who can answer my questions. I’ve called GE twice with DEXA questions 🤣 and I’ve been considering reaching out to Hologic (my DEXA w/ TBS was done on a Hologic scanner) and asking if someone that understands their equipment could help me. 😂

It shouldn’t be this hard.

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@fearfracture

I’m glad you were persistent. Have you had the DEXA w/ TBS yet? If, yes, what were your results?

I had a DEXA w/ TBS in December 2022 and I have yet to find anyone who can answer my questions. I’ve called GE twice with DEXA questions 🤣 and I’ve been considering reaching out to Hologic (my DEXA w/ TBS was done on a Hologic scanner) and asking if someone that understands their equipment could help me. 😂

It shouldn’t be this hard.

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What are your questions ??I looked at my report though don’t have it with me at the moment, I’m at camp. Mine was done on the same type scanner.

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@ans

You are soooo right!!!! Thought I was golden when I fell off my chair realizing there were 3 places in my close geographic area. Only then to be sooo disappointed to find one place said , yes we have that but we don’t use it. - that was at a drs office so I moved onto a large creditable hospital that was also listed. I had to eventually get connected to the imaging lab to inquire as those on the general phone knew nothing of this at all. When I spoke to a person that actually does imaging there , her respond was again we do have that (the TBS) but our drs have made the decision not to use it. I couldn’t believe my ears. I asked why and she couldn’t tell me the answer. I asked her to please ask the question and to call me back. I’ve never heard from her. Then one last lab to try. This one further , but still easily doable. An hour away.
I had a phone number and tried for half a day to get to the correct people. Such a run around I finally gave up. Then a few weeks ago I decided to drive to the address so I could find someone to talk to directly. I got there and asked if they did the DEXA WITH THE TBS. She had no idea. Waited for the lab worker in between pts. I asked her , of which she said , “I don’t know”…. I’m thinking is this possible???? Then she said , “you know yesterday I did a DEXA and the read out was different. Let me go check”
She came back to say yes the extra read out was a TBS. She explained as a lab person you just run the test as you’re told and that’s it. Crazy!!!! Anyway, she was excellent… I explained I had a DEXA scheduled in 3 weeks and would like to cancel that one and have one with the TBS. She set up an apppointment with me on the spot and last week I had it. Gave me the read out and an extra copy for when I meet with Dr McCormick in August. The lab worker did in conversation tell me that they have the most up to date machine to do DEXA’s in the whole area. Glad I persisted!!! However, as I also found out , I could have called that phone forever and never got them as it’s hooked up through the hospital somehow and calls are not put through to the lab at all. SO just know you may need to SPEND TIME to really make this happen!!!

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Thanks for the info.! Please let us know the name of hospital where you had this done. ☺️ thanks! Kaia

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@riverpark

Thanks for the info.! Please let us know the name of hospital where you had this done. ☺️ thanks! Kaia

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The lab is named :
Valatie Image, PC
It is affiliated with Columbia Memorial Hospital , but is not in the hospital, it’s in the Valatie Medical Arts Building
Address:
1301 River St.
Valatie, NY

This is their phone number , but you’ll remember I never got through to them by way of the phone.
518-758-7786

Don’t know where you’re from , but it’s generally in the greater Capital District of upstate NY. Near Albany NY

Hope that helps!!!

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@ans

The lab is named :
Valatie Image, PC
It is affiliated with Columbia Memorial Hospital , but is not in the hospital, it’s in the Valatie Medical Arts Building
Address:
1301 River St.
Valatie, NY

This is their phone number , but you’ll remember I never got through to them by way of the phone.
518-758-7786

Don’t know where you’re from , but it’s generally in the greater Capital District of upstate NY. Near Albany NY

Hope that helps!!!

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Thanks so much! I’m in Sacramento, CA, and am going to contact my endocrinologist about the test…I hope she is receptive.
You give me hope!

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@riverpark

Thanks so much! I’m in Sacramento, CA, and am going to contact my endocrinologist about the test…I hope she is receptive.
You give me hope!

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Riverpark.
I am in Roseville. May I ask who you see for an endocrinologist. I am having a hard time finding a local doc.
I will pm you as well

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@candy209

Riverpark.
I am in Roseville. May I ask who you see for an endocrinologist. I am having a hard time finding a local doc.
I will pm you as well

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I see an endocrinologist at Kaiser here in Sacramento.

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I decided not to take ProLiant and chose to take Norwegian Cod Liver oil capsuls wich I have taken faithful for 4 yrs. My recent dexa scan showed no more deterioration to this point. I based this treatment on a fact that during ww11 in England the Gov't decided to provide this oil for all young children to prevent them from getting rickets in the legs ,[a weakening of leg bones]. It appears to be helping me thank goodness.

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@riverpark

I see an endocrinologist at Kaiser here in Sacramento.

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Thank you.

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@ans

What are your questions ??I looked at my report though don’t have it with me at the moment, I’m at camp. Mine was done on the same type scanner.

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On my report it shows my TBS results L1 - L4 = 1.287 (partially degraded microarchitecture) so that is the average of all 4 lumbar vertebrae.

Normal microarchitecture > 1.31

Degraded < or = 1.23

Given that my 1.287 is closer to 1.31 than 1.23 I took that as an awesome sign.

On page one of the report, there is an image of my L1 - L4 called TBS Mapping and the colors are green (high TBS), yellow is in the middle, and red (low TBS) so the image of my spine, or TBS Mapping, shows each vertebrae shaded in these colors to show what my trabecular bone looks like. On page two, there is a chart labeled "Detailed Spine Results" and it lists the TBS for each vertebrae.
L1 = 1.278 TBS
L2 = 1.323 TBS
L3 = 1.342 TBS
L4 = 1.205 TBS
L1 - L4 = 1.287 TBS (the average)

Note, I question the L4 TBS number. From what I have seen, generally, L1 has the lowest TBS, then L2, then L3, and L4 has the highest TBS. Not sure if you are familiar with Dr. Lani Simpson, but she talks about how, often, on DEXAs, the area captured is 'off' and that skews the data. I honestly think that might be going on with my L4.

The DEXA report itself shows:
BONE SITE BMD T-score BMD T-score Adjusted*
Spine: -4.0 -4.8
Femoral Neck: -3.3 -3.6
Total Hip: -2.6 -3.0
*Adjusted for ethnicity, gender, and TBS*.

What exactly does that adjusted mean? Does it mean that they thought my spine t-score was -4.0 but with the TBS added in they now think my spine t-score is almost 1 standard deviation worse, which means instead of 40% less bone than the average 30 year old, they think I have 48% less bone than the average 30 y.o. I mean I really just don't buy that one bit.

I am 4'11''. I haven't had any height loss and I am fracture free. I'm 54 and for the majority of my adult life I weighted be 92 - 101 lbs. In 2016, I gained a few lbs and in 2017 was diagnosed with hypothyroidism for which I take levothyroxine daily. Note, even with the extra weight, my BMI was always w/i range, so I have never been classified as overweight. My current weight is pretty stable at 108 lbs. I joined a gym in January 2022, and I go 3 times a week and between my July 2021 DEXA and my December 2022 DEXA, I significantly increased my lean body mass (muscle).

I am more aware of my movements and shoes with good treads are a high priority for me. I practice hip hinges regularly to remind me to bend at my hips and to avoid forward flexion my spine. I have increased the weights that I use at the gym, what I consider to be a significant amount, over the 1.5+ yrs that I have been going. For ex., I started carrying two eight lb weights when I do the farmers carry (one weight in each hand) and I am up to carrying two thirty lb weights, I am up to 130 lbs on the back extension machine, and 265+ lbs on the leg press (265 lbs is around 2.45x my current weight) and periodically, to challenge my muscles, I take the leg press weights to the max the machine will allows which over 400 lbs.

Any insight you have would be appreciated. I would love to know what your TBS numbers were and if they "adjusted" your t-scores up or down.

The technician who did my scan didn't know anything about DEXA scans. Although I had called and confirmed that the imaging center had a DEXA with TBS capabilities prior to scheduling my scan, when I arrived (after driving approximately 5 hours to get there specifically to get a DEXA with TBS) the technician told me they might not be able to provide the TBS to me. I had the scan done anyway with the intention of writing to the board of directors of the hospital (the imaging center was in a hospital) if they didn't provide me with the TBS numbers. Also, while I was talking to the technician, I mentioned something about t-score of 2 or 3, to which she replied, "that's only 1 point, that's not a big difference." HELLO! That's a 10% difference. That's huge. As the technician predicted, the facility didn't send me my TBS scores after I had the scan. They only sent the standard DEXA info. I had to hound them from several months and it wasn't until I threatened to report the hospital for a HIPAA violition (refusing to provide me with my full DEXA w/ TBS and ancillary data) did I received the information they should have been able to print out and hand to me immediately after having preformed the scan.

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