New to Osteoporosis

Posted by hollymarie54 @hollymarie54, Feb 5 3:37pm

Found out recently I have osteoporosis at -2.6 spine. The next lowest number is 1.9 femoral neck. I’m in the process of testing with an endo. to rule out anything that might have caused this to happen “early” (I’m 54). So far she isn't seeing anything. Super grateful for all the posts I’ve read, and not sure what my endo is going to recommend. But I’m looking for thoughts/suggestions on what could make most sense for treatment since I’m currently not severe Osteo. I’m pretty active already, but have upped my nutrition which was needed and started HRTs couple weeks ago. Thank you!

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Hi @hollymarie54 it's great that your endo is checking secondary cause(s) of your bone loss. I think this is one of the keys in management of osteoporosis. HRT could be pretty effective if used early and that your bone loss is due to estrogen loss only.

If I were you, I'd definitely get a baseline bone turnover markers (CTX and P1NP) done. Since you already had 2 weeks worth of dosing, your CTX might be a bit off baseline but P1NP probably wont be affected yet. Monitoring bone markers is a great way to gauge effectiveness of therapy instead of the lengthy waiting on the annual/bi-annual dexa scan, bearing in mind that bone markers may not work for everyone or every situation.

Please keep us posted regarding your progress. Best wishes to you

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Hi @hollymarie54 . I was 63 and also somewhat ahead of the curve when I got the same T scores as you last year. I've taken a similar course of action: checking for causes (none found), testing bone markers (not alarming), learning and being more conscientious about diet (Cronometer App), including upping protein and adding Fortibone collogen; studying and being more diligent with exercise, including increasing amount of weights; starting HRT (which I hope is my magic bullet, and will postpone any further medical intervention...).
I learn so much from the posters on this forum. One important thing being that you have some time. This is a slow process. Keep doing what you're doing and keep learning and advocating for yourself.
The wealth of information and support available here has been enormously helpful to me.
Wishing you the best!

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hello @sonodeka . Thank you for sharing your story. Have you started doing HRT at what age and how did it affect your evolution? Did it help stabilizing it? I am 53 and pretty bad score, -4.8 on my lumbar spine (just found out couple of months ago), but I am very active and at the moment I am not considering taking medication. Thank you for sharing your advises. I am also going to investigate if i can start HRT, now.

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@adian

hello @sonodeka . Thank you for sharing your story. Have you started doing HRT at what age and how did it affect your evolution? Did it help stabilizing it? I am 53 and pretty bad score, -4.8 on my lumbar spine (just found out couple of months ago), but I am very active and at the moment I am not considering taking medication. Thank you for sharing your advises. I am also going to investigate if i can start HRT, now.

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Hi @adian. I started HRT at 63, just 5 months ago, about 10 years post menopause. I am on a low dose generic transdermal estrogen patch, .0375, twice a week, and 100mg progesterone nightly. I won't have another dexa for another 9 months so I don't have any bone feedback. I've also carefully monitored my diet and supplements and increased weightbearing and weightlifting exercise, so if I do stabilize or possibly increase density it will probably be a combination of factors.
All this being said, my starting numbers are low.
Your numbers are much more serious. Although you might benefit from HRT there seems to be more going on than estrogen loss.
It's most important to try to find the causes of your bone loss and address them. Were I you, I would have then taken an anabolic medication like Tymlos to stimulate quality bose growth and help prevent fractures.
I encourage you to search this forum on those subjects: discovering root causes of bone loss, bone marker testing, anabolic drugs, and more. There is so much information and experience here to learn from. Do a lot of reading. Try "Great Bones" by Keith McCormick to learn about bone biology and processes, medications and more.
Keep us posted! Wishing you the best in health!!

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@sonodeka

Hi @adian. I started HRT at 63, just 5 months ago, about 10 years post menopause. I am on a low dose generic transdermal estrogen patch, .0375, twice a week, and 100mg progesterone nightly. I won't have another dexa for another 9 months so I don't have any bone feedback. I've also carefully monitored my diet and supplements and increased weightbearing and weightlifting exercise, so if I do stabilize or possibly increase density it will probably be a combination of factors.
All this being said, my starting numbers are low.
Your numbers are much more serious. Although you might benefit from HRT there seems to be more going on than estrogen loss.
It's most important to try to find the causes of your bone loss and address them. Were I you, I would have then taken an anabolic medication like Tymlos to stimulate quality bose growth and help prevent fractures.
I encourage you to search this forum on those subjects: discovering root causes of bone loss, bone marker testing, anabolic drugs, and more. There is so much information and experience here to learn from. Do a lot of reading. Try "Great Bones" by Keith McCormick to learn about bone biology and processes, medications and more.
Keep us posted! Wishing you the best in health!!

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Thank you so much for such a comprehensive information. Much appreciated. Good luck to you as well.

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please research the wealth of posting here over time. I'm sure it will overwhelm! I am pretty sure after 30 years of actively dealing with OA that 1) my inflammatory pain came not from OA but Gout, 2) my small body frame contributed, 3) my hereditary situation was a MAJOR factor, 4) as well POST MENOPAUSE 5) and possibly bad habits when I was young. However bones reform over 10 years so I think Menopause and ancestry played the biggest part. Knowing that, I take Allopurinol for gout, Vit. D and B, L-carnitine from a cellular level deficiency, take Bioidentical hormones (can't build muscle and bone without them!) it also helps with bones, take the bone medicine Reclast/Tymlos as prescribed by the endo doctor and exercise. Eat right. My personal path!

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Thank you all! I so appreciate what I’ve learned from all of you.

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@loriesco

please research the wealth of posting here over time. I'm sure it will overwhelm! I am pretty sure after 30 years of actively dealing with OA that 1) my inflammatory pain came not from OA but Gout, 2) my small body frame contributed, 3) my hereditary situation was a MAJOR factor, 4) as well POST MENOPAUSE 5) and possibly bad habits when I was young. However bones reform over 10 years so I think Menopause and ancestry played the biggest part. Knowing that, I take Allopurinol for gout, Vit. D and B, L-carnitine from a cellular level deficiency, take Bioidentical hormones (can't build muscle and bone without them!) it also helps with bones, take the bone medicine Reclast/Tymlos as prescribed by the endo doctor and exercise. Eat right. My personal path!

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@loriesco May I ask how old you are? What your Tscores were when you started treatment and what’s the plan after tymlos for you? Thank you!

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@lurawilson

@loriesco May I ask how old you are? What your Tscores were when you started treatment and what’s the plan after tymlos for you? Thank you!

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@lurawilson my age is 68. I have had DEXA scans every year since 1999. I was only in osteopenia and never diagnosed with osteoporosis in fact in 2023. I was determined by DEXA to be normal. When they opened me up for cervical spine surgery, my bones fell apart in their hands. C5 was paper thin. My surgeon said that DEXA scores are generalized. I have had complete hip and spine replacements so the places that they tested were not indicative of all parts of my body. Now I’m doing the DEXA with the TBS analysis and that is supposed to be better and more consistent from year to year. I’m still not testing as having osteoporosis just osteopenia, but my surgeon made it a .2 weeks ago to put that my bones are demineralized. I can tell you I showed Improvement at the time I started TYMLOS which was one year after the RECLAST infusion. And six months after that, I showed more improvement. This was on the CTX/P1NP test scores. Don’t get too hung up on some of these tests. My endocrinologist explained why the numbers aren’t exact and why he wasn’t so keen on establishing a baseline and testing me a few months later it has to be over the long haul.
The plan after TYMLOS is to go back and do two or three more years of annual RECLAST infusions. And then I am supposedly done. My doctor said for life I’m not so sure but I’ll find out when the time comes. He is a renowned endocrinologist at Ucsd. I hope that helps!

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Welcome. I was diagnosed with osteopenia at age 53. I started HRT at 51 but didn't have my first DEXA until 53. Despite the HRT, a good diet, resistance training, and calcium, Vit D, and Vit K supplements I progressed to osteoporosis by age 57. I also had a tremendous amount of stress in my life at the time which may have contributed.

I was placed on Fosamax at 57 and took it for over five years. I had a T8 compression fracture at age 62 so the bisphosphonate didn't work effectively for me. My spinal T-score was never worse than -1.6.

I'm off the Fosamax and have done 4 months of Tymlos, 3 months off, then 1.5 months of Forteo to build bone. Unfortunately, the Forteo has resulted in joint pain that is so bad I can't exercise. As someone who has exercised regularly for 13 years now (lifting weights, running, cycling, etc.) not being able to exercise is not an option.

I hope your path doesn't follow mine and the HRT and other lifestyle options work for you. I just wanted to chime in to say that sometimes HRT doesn't always work. One recommendation I have is that if your doctor wants you to try Fosamax, make sure they are regularly assessing you and don't leave you on it for two long. Fosamax worked for me for two years then was no longer effective. It also slows down new bone growth when taken for long periods. The recommendation is to take it for between 3 to 5 years but that may be too long for some individuals like me who end up developing brittle bone that fractures easily.

Good luck!

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