Connect
3 month TYMLOS findings
After 3 months on TYMLOS, I have my first check-in of blood tests back. I suspect they are not good news. I welcome any thoughts. From May - August, P1NP went from 82 to 84 and in Aug, CTx was 298. There is no baseline CTx from May, 2024, but in May 2023 it was 144. I am crushed. I think the P1NP was supposed to have risen significantly. I do everything "right" - special PT 2/wk for bone health plus 10,000 steps a day, good health, vegan diet, ideal weight, and all other blood work is excellent. I do not know why I am not responding to TYMLOS better. 4 Reclast infusions in past kept my DEXA stable and the hope was TYMLOS would increase bone in my spine ( T-3) to get me out of OP. I have read Great Bones and just about everything I can to learn about other options. I have a good Endo in a Boston Teaching Hospital so I am sure I will have a constructive conversation, but I'd welcome anyone here to let me know their experiences, what can be blocking TYMLOS effectiveness and if the barely increase in P1NP is as bad as I think. Thanks, everyone - this is all so mind-bending.
Like
Helpful
HugInterested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.
Connect
@peter9526 - this sounds like a tough moment for you and also that you are in good hands with an Endo who is thorough and has put you on TYMLOS. Most people have terrific results, most notably in the spine, on TYMLOS. TYMLOS does drain your D, so you may want to ask to have that checked every 3-6 months to be sure it stays high. Mine dropped from 50 to 29 after only one month on TMPLOS. I upped my D and it went back up to 50 in a few months. The best source of calcium is food not pills, so try to find foods that will give the calcium you need. 2-3 glasses/day of unsweetened calcium fortified almond milk, is my go to. Not all almond milk has added calcium, so be sure to check the label. Depending upon your abilities once the fractures heal, you could ask if for a referral to a PT who specializes in OP to begin an exercise program, strengthening your back and other muscles in the right ways, improving balance, and most importantly, enjoying movement and an active life. Great Bones is a wonderful encyclopedia for this journey but it is also intensely detailed and can be overwhelming. Ideally, it will give you great information with which to ask your health care team questions and to engage in thoughtful care plan. You did not mention your DEXA scores, but hopefully in one year you will see great improvement from the TYMLOS. Keep us posted!
-
Like -
Helpful -
Hug
1 Reactionhi peter9526,
the usual causes of osteoporosis in young men are use of medications and endocrine disorders.
In your situation, I would want testing until somehing is found, or everything is ruled out. Parathyroid and Adrenal would be my first targets of investigation
Can you tell us what testing has been done for parathyroid disorder.
Are there other symptoms or discomforts that you've experience along your live so far -- disestive, or energy levels.
Testosterone levels can be a factor.
You are on the very best medication and that gives me confidence in your endocrinologist.
Welcome to Mayo Connect.