@junonia13 , I just met with my endocrinologist today to talk about what to do about my osteoporosis now that we know that I have Hypophosphatasia (HPP). Here are some things she said:

While they were going to start me on Tymlos (I have the first dose in my refrigerator), they are no longer going to proceed with it because they do not want to give me any bisphosphenates, which you have to do after Tymlos. Because I haven't yet fractured and am very healthy and active, we are going to wait until there's a greater need to take on the added risk of bisphosphenates given my HPP.

She wants me to stop supplementing with Calcium, Magnesium and K2. She wants me to shoot for 800 mg calcium daily through diet only. She said with HPP, the calcium supplements won't be taken up into my bones and she is concerned about where it would go.

She said if I fracture, one thing they could consider is the medication for HPP called Strensiq. It is designed for HPP, but there is some evidence that it can increase bone density.

She also said that for years, she had trouble finding any patients with HPP and in the last year, she has had 10 patients diagnosed with it. She is thinking that the prevalence in the population may be a lot higher than they realized but that they weren't picking up on it. She expects that there will be at least one presentation on the topic at this year's bone (or endocrine?) conference that she said will be in Boston (I didn't get the exact name of the conference.)

Please keep us updated on what you learn! There aren't that many of us, so it would help to learn collectively!