Osteoporosis

[Begonia]

Thank you @missy. I'm in a sequence of shiftwork but will read these early next week.

It's hard to think that where I'm at, might have been prevented. I stuck my head in the sand 4 years ago, did what I was told and have lost valuable time.
Fool me once...

Thank you. It's a little overwhelming going into this deep dive into osteoporosis.

 

[missy]

Interesting. Dr Miller has been at Colo. center for bone research, Panorama, and Miller bone center. I saw him a few times at the Colo. Center. I have no doubt that he knows his field very well, and I really liked him, but he was hesitant to refer me for parathyroid surgery. He referenced a bad experience with a woman dying on the operating table....

And I have found (while waiting to get an appointment with a new endocrinologist after Panorama closed their bone center) that a bone marker test - C-Telopeptide - can be ordered on your own through Walk in Labs. I was getting desperate and just about to do all the tests and Dexa scan on my own, without insurance - I need to find out how my bones are doing a little more than a year after my surgery.

Dr Miller is the top in the field. I cannot comment on your specific case but I am quite sure he sends people for HPT surgery if they have primary HPT. And it is very very rare for anyone to die during that surgery. If you have a skilled surgeon you should be just fine. My DH had that surgery and they also had to remove his thyroid. It is not an uncommon surgery and in fact HPT is more common than most realize. It is sadly misdiagnosed often. A skilled surgeon is always key

 

[missy]

Thank you @missy. I'm in a sequence of shiftwork but will read these early next week.

It's hard to think that where I'm at, might have been prevented. I stuck my head in the sand 4 years ago, did what I was told and have lost valuable time.
Fool me once...

Thank you. It's a little overwhelming going into this deep dive into osteoporosis.

Yes I was where you are almost 4 years ago. It is overwhelming but try breaking it up into one day at a time and when that is overwhelming one hour at a time. You are going to have to read all you can to educate yourself so you can advocate well for yourself because unfortunately most physicians are not knowledgeable when it comes to the facts about BHRT and OP. But take it one day at a time and you will get there. Hang in there. And when you are ready I can link you to the BHRT group if you want more info

 

[missy]

Thanks @missy for all the links/info. It's going to take me a while to get through it all but plan on taking my time.

You've definitely done your research....there is a lot there and I appreciate you passing on what you've been able to learn.

It is my pleasure tyty. I do not want any other woman to go through this. It is totally preventable but unfortunately mainstream medicine is woefully behind and finding a knowledgeable op and BHRT physician is like looking for a needle in a haystack. But you are doing it right. Learn all you can so you can advocate well for yourself. I am here to help just tag me when you have further questions and if you want to join the BHRT FB group let me know

 

[Demon]

Dr Miller is the top in the field. I cannot comment on your specific case but I am quite sure he sends people for HPT surgery if they have primary HPT. And it is very very rare for anyone to die during that surgery. If you have a skilled surgeon you should be just fine. My DH had that surgery and they also had to remove his thyroid. It is not an uncommon surgery and in fact HPT is more common than most realize. It is sadly misdiagnosed often. A skilled surgeon is always key

It may have been because my PTH and calcium weren't way out of normal that he wanted to watch it for a while, just like everyone else did. And then he left the CO. bone center and hadn't yet joined up with Panorama. Then just as I was going to schedule an appt. with Panorama, he left there and was self-pay for a bit. I did finally have the surgery, and really my symptoms were plain as day when you visit parathyroid.com

 

[missy]

It may have been because my PTH and calcium weren't way out of normal that he wanted to watch it for a while, just like everyone else did. And then he left the CO. bone center and hadn't yet joined up with Panorama. Then just as I was going to schedule an appt. with Panorama, he left there and was self-pay for a bit. I did finally have the surgery, and really my symptoms were plain as day when you visit parathyroid.com

Unfortunately many are in this same situation. It’s very under diagnosed. I personally was the one who diagnosed my dh. The endocrinologist kept insisting no he didn’t have hpt. Well he had it and I fought tooth and nail to get him the right treatment. Which was surgery of course. Glad you finally had yours and that it was successful. As with all things in medicine and healthcare one needs to become an expert on their health issues and must advocate to get the best treatment and care

 

[Ann]

Hi @tyty333 here’s a thread I wrote for one of my groups. Perhaps you’ll find it helpful. @Begonia this is from the group I recommended to you fyi

“
Osteoporosis thread

For anyone who is interested in osteoporosis and hormones I hope this thread can be helpful. It is important (as with all things) to educate ourselves and become our own advocates. No one cares about us and our health more than we do. And just like the BHRT field the osteoporosis field has many differing opinions and it can be difficult to navigate so I am hoping this thread can be a resource for those who need it.

Every year the best physicians and other health professionals in the osteoporosis field meet at the Santa Fe symposium and discuss all the latest updates in the OP field. It is informative and excellent.

I am sharing a link that includes all the previous years. Take your time and watch each webinar at your own pace. They are worth watching if you or a loved one is dealing with this or interested in learning about OP so you can do the best you can in preventing osteoporosis.

Santa Fe Bone Symposium – Osteoporosis Foundation of New Mexico

www.ofnm.org

Another worthwhile presentation to watch by Dr Susan Ott. There is so much to learn and the best way to do so is little by little at your own pace. Do your research and your due diligence so you can be your best advocate. Always research and always question any and all treatments so you can be confident you are choosing what is best for you.

[

Dr Ott is a huge proponent of E2 for bone health.

A few more links fyi

[

One of the most valuable articles IMO is about sequence of treatment and how critical it is for proper care. Written by another great in the field. Dr Paul Miller

https://millerbonecenter.com/wp-content/uploads/2020/09/Cosman-F-TReatment-Sequence-Matters-JBMR.pdf?fbclid=IwAR3_JNuvSJUY1YHKSCQA5-wGJuJrXe5iHdRUl_5M01iQZlArnsOM-mAQNuw

Bone turnover markers can be a critical monitoring tool. Many physicians still don't understand their use and it can be challenging to get them ordered. However the right physicians will use them to monitor the individual and guide treatment. I find them to be a truly invaluable tool

[https://www.ncbi.nlm.nih.gov/books/...Jc33bpiwhNaxp5V9pNlWsYl0sXzXhbZCmMBjxlZPklkQ)

Estra*diol will help get your bone markers to optimal levels. Before I started my BTMs were super high indicating I was experiencing fast bone loss. And my DXA scans proved it. I started e2 and within months my CTX went to what is considered an optimal level.

Another article about BTMs

https://eje.bioscientifica.com/view/journals/eje/183/1/EJE-19-0970.xml?fbclid=IwAR0YHQ2Q5aVqS16T41aUyDwJkNCAXMXE0lS1m-jNOk7a1HWpl94DrSSG6X4

One more

The use of bone turnover markers for monitoring the treatment of osteoporosis in postmenopausal females undergoing total knee arthroplasty: a prospective randomized study - Journal of Orthopaedic Surgery and Research

Background Osteoporosis (OP) and osteoarthritis (OA) commonly coexist in postmenopausal females. The decrease in bone density and increase in bone resorption in postmenopausal females with OP may consequently affect the surgical outcome of total knee arthroplasty (TKA). However, clinicians often...

josr-online.biomedcentral.com

For anyone considering bio identical HRT treatment for osteoporosis I highly recommend the book "Estrogen Matters". Written by an oncologist and it is a good source of info. I do not agree with everything in the book as he used Premarin but it remains a good resource despite that. Just read it (as all things) with a critical eye

[https://estrogenmatters.com](https://estrogenmatters.com/?fbclid=IwAR2PTXs9cS2KXUxXiFmeFBX-Rmd17161d8y14rvbHtl_IfaWLyi8yWHw16A)

More on estrogen

[https://www.endocrineweb.com/.../es...pobuQBnfs2nzap5jLjFi-CzB5UBa4MaIDybNRu3pSNYA)

Unfortunately there is still a paucity of good research articles about BHRT for women and OP. It is still not considered to be an OP treatment but rather for prevention. However I (and many others) are proof that it does indeed work well for treatment. Unfortunately the WHI study of 2002 caused much damage and after that hormone treatment was no longer recommended to be used for OP. Of course we all know the WHI study was found to be faulty and synthetic progestin was used. We know that bio P is much safer and in fact protective of bones and so much more.

[https://jamanetwork.com/journals/ja...yZbmFu2l0PL4zNdMhIn7gzdAFQPLcDp_prabf1tfAKmM)

[https://journals.lww.com/.../The_20...uVKahRlNl2DBrKbn5uch6FvL_Vtu-5kw6ZqKJZDi-bLo)

I think in a number of years we will see their position change on older women using HRT safely. Unfortunately the medical field moves slowly and changes in outdated thinking takes time.

[https://www.medscape.com/viewarticl...APLGffj8gAdX_OAm4zHbXSbv6RutqujMQ5Xkhs4#vp_1)

It's Time to Rethink Hormone Therapy for Women

A new USC study may change views on the benefits of hormone replacement therapy for womens health.

news.usc.edu

Here is good explanation of BTMs

[https://www.racgp.org.au/afp/2013/m...WnO4f76LTBCM5GKe1qzK333my-eBlmrklSJds5EQp54k)

An important article written by a very bone smart (we call them bone-heads lol-a huge compliment) physician

The Paradox of Osteoporosis Irreversibility | Robert P. Heaney, M.D.

Here is another thread discussing the levels necessary for bone protection. 40-60 pg/ml is the minimum e2 levels we need for bone benefits. I cannot link it for some reason but it is pinned.

[https://pubmed.ncbi.nlm.nih.gov/145...vTOA2aKZ2uHEBIIg_Kpq4vwNUSOHzH764Dl8656d8Sqg)

We have a number of members here who have helped their bone health immensely with BHRT. Judi is one. I am another. My spine was -2.8 as measured by DXA with very poor microarchitecture as measured by TBS. Trabecular Bone Score which gives a quality of bone measurement. Two years after starting BHRT my spine is now considered to be of "normal" density and my microarchitecture has improved immensely. So BHRT not only helps bone density but bone quality. Some of the bone experts believe e2 not only acts to improve bone resorption but also has a small anabolic effect improving bone quality.

Many top bone specialists in the field feel it is not only e2 that is critical for bone health but also P and T to some extent. Just another reason to replace our sex hormones when we stop producing the levels we need.

I am happy for others to share their experiences with BHRT and bone health improvement and to share any research articles you think are helpful. This thread only touches the surface and is by no means complete. But it's a place to start if you are just learning about BHRT and bone health”

Awesome post. I'm very familiar with Dr Miller. He is very good friends with my Endo Dr who also participates in the Santa Fe Bone Symposium. (Dr Steven Petak) You have shared valuable info and I plan on reading asap. I am 68 and my Dr says no to BHRT. I did take it for 6 years in my 50's. Apparently it didn't help my awful bones. At the time, my Dr said take it for only 5 years. Very confusing and conflicting info back then. I am on Evenity now and hope I get some results.

 

[Begonia]

Bloody h*ll. A routine urine sample I submitted has me seeing a urologist, something was picked up. Then my family GP is leaving her practice so I'll be without a doctor. Health care in BC is truly broken.