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By what percentage did your T-scores improve after a round of TYMLOS?
Osteoporosis & Bone Health | Last Active: 4 days ago | Replies (52)Comment receiving replies
@roseincalifornia Yes I have an endo, but she may not be thinking "outside of the box". She has been my thyroid dr. for years but not clear about her bone expertise. Tried a so-called metabolic bone expert with Univ. of Miami and was very disappointed. Ordered no new blood or urine testing and suggested a new DEXA in January, this after I emphasized that my spine is too damaged for an accurate DEXA assessment, and I had bi-lateral hip replacements in 2017. Some doctors just don't listen. Maybe it is too soon to expect results from Tymlos, but losing density and trabecular health was not what I expected.
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@willowmena I know when I got my REM scores after 12 months on Tymlos I was very very upset because it showed a loss in bone. I even considered stopping the Tymlos. Fortunately, I waited for my DEXA results which showed a 10%+ increase in my spine. I understand you have an issue where a dexa scan may not be possible. I am just asking u to be very skeptical of the REM scores. You have a great P1NP score which shows there is a lot of activity in your bones. I am not a doctor but from talking to one, and reading a lot of other people's experiences with Tymlos, it is extremely likely that your bone density is increasing, not decreasing. I hope you continue looking for a bone specialist or endocrinologist who treats bone disorders. My endocrinologist moved so I am looking for another one, and just had an appointment with a well known endocrinologist (bone specialist) in LA. She was terrible - abrupt and dismissive. Now I have to look for another one, so I know it is a real headache to find a good doctor, but please don't give up. A lot of them have long waitlists - new patients have to wait 6-12 months - but if u call them every week you might be able to get in on a cancellation. I really wish u the best, and please keep us all updated on your progress. Take care.