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Help understanding T score results

Posted by calirose @calirose, Nov 5, 2023

Hi, I am 70 years old, and was diagnosed with osteoporosis 2 years ago in lumbar spine. Other areas were OK or osteopenia. My spine T score was - 3.6 which worried my Dr so much she put me on Prolia (off topic but I had no side effects).
Two years later after Prolia and continuing all the diet and exercise recommendations, which I have done for decades, my lumbar spine t score was - 2.5 last week. (Other areas were apprx the same)
But on Fri. Night I got an email from my (new) Dr just saying that my osteoporosis had worsened and I needed to see a specialist. No other info or explanation.
I thought that score was an improvement?
What am I not understanding?
I cannot reach her until Wed. and am really stressing about this.

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calirose | @calirose | Nov 7, 2023

OK Everything is OK! The Doctor called me herself and said there HAD been a mix up which she was unaware of...long story - but I am fine. The spine and all other areas scanned are improved or same - the hip is very slightly worse but still in the area of Osteopenia and the Prolia was not on my chart that she could see - being out of town made it difficult for her to access everything.
Apparently the email was supposed to be longer and say slightly worse not significantly worse - apparently she was trying to dictate to an assistant what to say.

I feel all over much better

I cannot express how amazed I have been with all the kindness and wonderful replies I got. Thank you all for being there
I wish you all the best health possible and the most wonderful holidays - whatever you celebrate - the the weeks to come.

REPLY
suga | @suga | Nov 8, 2023
In reply to @calirose "Thanks for your kindness and info Yes, I had a DEXA two years ago and was..." + (show)
@calirose

Thanks for your kindness and info

Yes, I had a DEXA two years ago and was diagnosed then based on a -3.6 T score of my lumber spine. Other areas were in the low -2 and the Dr I had then felt they were not too concerning. That Dr put me on Prolia for several reasons

Neither test results that were sent to me has any other info than the T score. I was told that DEXA only measures bone density and nothing else so that is good info for me to know.

This DEXA report just had T scores as well - my neck and spine results only (no hip score as before) only and the neck was very slightly worse but still in the osteopenia range and the spine had gone to -2.5. The only other info was that my bone density in my spine had increased by 10. something percent. That is why is was surprised when I got a short email from her claiming I had significantly worsened!

She is supposedly out of town but did answer an email last night, partially - but now she said it was my hip that was worse, not my spine... which was never mentioned before so now I am more confused.
She also said she though I should start Prolia? Which she should know I have been on for two years She prescribed it the last time. So nothing makes sense and my husband says it has turned into a very bad comedy sketch!

So, I think my only choice is to try to see the specialist and get another opinion!

Jump to this post

I think when you mentioned your T scores were on your spine and neck only (not your hip) , it is your hip! DEXA doesn’t actually measure your neck (I think), it’s referring to the neck of your femur bone. Correct me if I am mistaken as I thought the same when I first got my DEXA score!

REPLY
calirose | @calirose | Nov 8, 2023

Yes you are correct...in my anxiety I didn't even realize that! LOL Thanks

When I finally talked to my Dr yest. she realized that was one of the issues we were having in communication - although not all of them And "Femoral" should have given me a clue but it didn't!

However it did start because she read the spine score wrong and told me the spine had gotten worse and then I went over the edge, letting my anxiety disorder take over with it's own little fear fest and it was down hill from there... and she change it to "HIP" but the written results this time used the term femoral neck and last time the report said "hip" so I was all mixed up! Would be nice if they kept the terminology the same.

REPLY
gently | @gently | Nov 8, 2023

Request the referral to the specialist. ASAP. Your new physician may be worried knowing that after Prolia you should be on another osteoporosis medication. She may be looking at trabecular bone scores. Or just the facts about Prolia. You may have escaped the multiple fracture syndrome associated with Prolia.
Whatever she lacks in terms of style, it is preferrable to the ease with which some practitioners wait until it is too late.
It is better to be frightened than unaware.
best wishes

REPLY
calirose | @calirose | Nov 8, 2023

Thank you! yes, despite figuring out that there was a lot of misunderstandings, misreading the test results and miscommunication that led to the whole craziness... I am still going to see the specialist for a second opinion and to be certain that I understand everything correctly.

REPLY
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