← Return to Struggling with making an osteoporosis treatment decision

Discussion
Comment receiving replies
@leeosteo

Thinwhitewoman, I love your call name! I also live in CT and am struggling to find the right doctor to help me. My PCP has referred me to an endocrinologist, however, my appt is August! I wonder if the Yale Bone Center is backlogged also.

Do you find the Yale Bone Center group beneficial? How did they determine to put you on Tymlos? Did they do bone biomarker tests prior to putting you on meds? May I ask your T scores?

Since you've stopped Tymlos are you stopping osteo meds altogether? Who is a Bone Fit certified PT... a physical therapist?

Jump to this post


Replies to "Thinwhitewoman, I love your call name! I also live in CT and am struggling to find..."

So glad you got the joke. When I was first diagnosed, I asked why and they said "because you're a thin white woman." I'm still looking for them to find the cause because that will lead to a real solution.
I denied meds for 5 years and my internist almost fired me as a patient. She was very scared that I'd have a hip fracture. I don't blame her for being concerned. Aren't we all?
So I have walked in your shoes. I was referred to Yale when the internist I was going to said that I had to take a water pill in order to take Tymlos and something in me said "full stop." Not another drug. I think it took 3-6 months to get an appointment with him. So Dr. Bergwitz was very patient with me. I don't think they're used to patients doing their own research and pushing back. Once he understood why I didn't want to take yet another drug, he ordered another battery of labs ($$$) and said I didn't need the water pill. I was leaching calcium because I was taking too much. After he halved my daily supplements, my labs were normal. Vindicated!
Arriving at Tymlos was not easy. I felt it was the least worst as he said the black label warning about osteosarcoma was coming off. I felt it had been on the market long enough to ID any big, bad side effects and prove it was effective. My issue is mostly the spine and that's where Tymlos is supposed to be really good at adding bone mass. I have only had DEXA scans and they continue to worsen. I'm sorry I had to stop and am still uncertain as to why I'm feeling so fatigued and suffer loss of appetite. Some on here have reported those side effects and they are listed on the Mayo site too. Hopefully my internist has some ideas and can run some tests on Wed. If we don't find anything else that looks like it's causing my symptoms, I'm going to turn back into that bad patient that refuses meds. I will not do nothing because I know this is serious.
My sister went to a Kripalu workshop on non-prescription medication solutions to OP and one of them was specific exercises and stretches as taught by a Bone Fit certified physical therapist. I wonder if anyone on here has been? My sister also recommended I walk with a weighted vest since weighted movement is supposed to help build bone. Supplements are also recommended, but we really need to do our our research to know what's right for our bodies given other meds and supplements we're taking. Hope this helps.