Can't find a specialist - Severe case, what now?

Where do you live? If you live near or in NYC, suggest you consult at HSS (Hospital for Special Surgery). There are a few wonderful women endocrinologists to consult with and a dept specializing in bone diseases like osteoporosis. It might even be worth consulting at HSS even if you do not live near.

@sstopalian Thank you for your reply!! We are not near NYC, but I'll look up HSS.

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!!

@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.

M, my L-4 was at -4.1 in Feb 2024, it's now a -1.8. The exercise, nutrition changes and drugs can really work! She is so young, her youth is a beneficial factor!

@boneoptimist Some serious changes in the industry need to happen pronto to stop hurting OP patients' best chance of making maximum gains. Current insurance company protocol suppresses anabolics' effectiveness....making the course of treatment less effective for the most severe OP patients. No bueno.

Hi @boneoptimist ☺️
It's very nice to meet you and congratulations on your excellent results!
May I ask you which drugs you used and for how long?
Many thanks!

@boneoptimist Thank you for sharing your success, and I'm very happy to hear you're improving!!

Would you be willing to share more about your regime? You mentioned exercise, nutrition, and drugs. (I know this is highly individual, but we've been getting some insight on what has worked for others.)

I hope your health and strength only continues on the incline. We'd love to hear any updates you have.

@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.

@174hz Glad to see there is an viable explanation that explains her OP. Like me, health providers should have caught the sky high risk of heading into severe osteoporosis early in the game.

Afraid I have zero experience or knowledge in the hormone replacement world, as that was not an option for me. Without having that knowledge, I would think she still needs to thoroughly question/pursue the Tymlos, followed by Evenity path.....possibly in conjunction with hormone replacement.

So very sorry for your journey. Prayers and best wishes moving forward. 🙏🫂🙏