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Can't find a specialist - Severe case, what now?
Osteoporosis & Bone Health | Last Active: Sep 12 8:53pm | Replies (26)Comment receiving replies
I am not medically trained, but if you're struggling to get in to see a specialist, I would continue to research and become as knowledgeable in this area as possible. The order of medications is actually going to be upfront more important than the physical therapy part of this. PT alone will not help protect your daughter. If T-scores are as severe as you have indicated, medication is a crucial step.
Being this young, has the cause actually been determined yet as to what caused the severe osteoporosis, such as a surgery, radiation, etc. If not and while you're working closely with your pcp, he may want to go ahead and run the baseline panel of bloodwork and 24-hr urine test needed for managing osteoporosis and obtsining baselines before treatment, including ruling out multiple myeloma (if no other reason is known for the osteoporosis at this young age).
I am guesssing that your eventual specialist (or pinch-hitting PCP) will ideally will want this order of meds: Tymlos for 2 yrs, followed by Evenity for 1 yr, followed by Reclast. Whichever doctor you end up dealing with will need to be prepared to fight insurance denials, but they can be won upon appeal. Best wishes and good luck!!
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@cathyf31 Thank you very much for your honest and thorough reply!!
Thank you so much for your honest and thorough reply — we really appreciate it.
Please forgive me if I miss a few points, but I’ll try to keep this concise and relevant:
We’re fairly confident that the underlying issue is functional hypothalamic amenorrhea. She never developed a regular menstrual cycle — she only remembers two periods starting at age 16 — and this followed a restrictive eating disorder at age 12. She recovered by 14 and maintained a stable weight afterward, but her cycles never normalized, even at her heaviest.
Recent lab work has shown TSH, T3, and T3 levels suggestive of subclinical hyperthyroidism, which we're looking into. She has an upcoming ultrasound and a referral with an endocrinologist (pending scheduling).
Since then, her diet hasn’t been concerning (aside from maybe inadequate protein and fat ratios), but she has always been extremely active. We suspect that long‑term high activity only deepened the FHA. Her first stress fracture happened in late 2017, which sidelined her from running and kickboxing.
To your knowledge, could BHRT — specifically regulating her chronically low estrogen — offer at least some protective support for her bones, even if it doesn’t reverse the damage?
We’re very wary of medications because our understanding is that once she starts, she’ll need to continue them indefinitely, switching from one to another for life. If that’s not accurate, please correct me. The potential side effects also feel overwhelming.
I regret to say this, but we’re not confident her PCP or local doctors have the expertise for a case like this. Years ago, her first OB/GYN recommended birth control pills, and more recently her PCP mentioned bisphosphonates — which, as you explained, isn’t the right starting point for someone her age and history. And we haven't found much research (articles, videos, podcasts, etc.) covering young women her age with this condition.
If ANYONE knows of any research with similar cases, please please send them our way!!
I’m sorry for the lengthy comment. Thank you again for your insight — we know you can’t diagnose, but your guidance is helping us understand the landscape and ask better questions.
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@cathyf31 , In my non-medical opinion, you nailed the order! The insurance companies might not like it, but if those are out of order, they will not work as well.