Osteoporosis

[Begonia]

Hi all,

I know PS is a place with a lot of knowledge about all sorts of things, and I'm hoping some of you can weigh in on this.

I've got osteoporosis. I don't remember my... is it t-score? I'll be visiting the doctor soon and will ask. I've been on Allendronate for 4 years now. My latest bone scan shows increased osteoporosis. The doc sent a message so I'll ask more about what that means. Her message said continue with Allendronate. I'd hoped to go off of it, the side effects are unpleasant.

Can anyone weigh in on what our discussion should look like? I want to know what my numbers were when I started vs now. Is there any stabilization at all? How much has the osteo increased? Are there any other meds I can try?

I don't drink or smoke. Eat very healthy, exercise and incorporate weight-bearing exercise as often as my chronic back injury allows. These latest test results were hugely disappointing!
Sigh.

 

[Daisys and Diamonds]

sorry to hear this Begonia
it really is time for something nice to happen for you

 

[Ann]

I have severe Osteoporosis Horrible DEXA scores -5, which is off the chart, bad. I was diagnosed 2 years ago after my internist insisted I get a DEXA scan. I did and then saw a local Dr who specializes in Osteoporosis treatment. He looked at my scan images and said this was done incorrectly, you were not positioned properly on the table. I had another scan using the hospital DEXA machine and it was worse. Note here - it is very important to get the scan at a place that trains their techs yearly and they know what they are doing. And use the same machine yearly. I was put on Forteo for 24 mos. It's a nightly injection, easy. I had no gains from that but at least I stayed stable. You have to transition to another drug immediately - I am now getting a monthly injection of Evenity. My suggestion is to educate yourself about this. I've read horror stories of Dr's prescribing these drugs and not testing their patient for underlying causes and doing all the proper blood work before prescribing any Osteo drug. Proper diet and exercise can help but can't cure it. I hope this is allowed but there is a great forum on Facebook, Osteoporosis Education and Support. Join and ask all the questions you have! There is also a great book that will help you - Great Bones - Taking Control of your Osteoporosis - Dr Keith McCormick. Amazon has it.

 

[Begonia]

sorry to hear this Begonia
it really is time for something nice to happen for you

Thanks Daisy. Love you girl.

 

[Begonia]

I have severe Osteoporosis Horrible DEXA scores -5, which is off the chart, bad. I was diagnosed 2 years ago after my internist insisted I get a DEXA scan. I did and then saw a local Dr who specializes in Osteoporosis treatment. He looked at my scan images and said this was done incorrectly, you were not positioned properly on the table. I had another scan using the hospital DEXA machine and it was worse. Note here - it is very important to get the scan at a place that trains their techs yearly and they know what they are doing. And use the same machine yearly. I was put on Forteo for 24 mos. It's a nightly injection, easy. I had no gains from that but at least I stayed stable. You have to transition to another drug immediately - I am now getting a monthly injection of Evenity. My suggestion is to educate yourself about this. I've read horror stories of Dr's prescribing these drugs and not testing their patient for underlying causes and doing all the proper blood work before prescribing any Osteo drug. Proper diet and exercise can help but can't cure it. I hope this is allowed but there is a great forum on Facebook, Osteoporosis Education and Support. Join and ask all the questions you have! There is also a great book that will help you - Great Bones - Taking Control of your Osteoporosis - Dr Keith McCormick. Amazon has it.

Okay. I'm on it. Hugely confused at this point but on it. Thank you for the advice!

 

[Daisys and Diamonds]

Thanks Daisy. Love you girl.

this will have to be gentle guys

 

[Daisys and Diamonds]

Okay. I'm on it. Hugely confused at this point but on it. Thank you fir the advice!

do you go on the thread of @missy's
the now ive really done it thread ?

 

[Begonia]

do you go on the thread of @missy's
the now ive really done it thread ?

No, never. I'll go look soon. Not sure what it's about. I'll go check it out.

 

[Daisys and Diamonds]

No, never. I'll go look soon. Not sure what it's about. I'll go check it out.

i think @missy has bones issues
actually i think Queen Camila might have it, her mother did

anyway all the ladies are very friendly and nice
you all ready know all of them
i just couldnt keep up
but someone on there will be able to give you great advice

 

[Begonia]

i think @missy has bones issues
actually i think Queen Camila might have it, her mother did

anyway all the ladies are very friendly and nice
you all ready know all of them
i just couldnt keep up
but someone on there will be able to give you great advice

Okay!! I'll head over there once I get home. Drove youngest son to an exam. Raining cats and dogs and dark dark dark. You're heading into summer yes? We're heading into winter. Uggh.

 

[Daisys and Diamonds]

Okay!! I'll head over there once I get home. Drove youngest son to an exam. Raining cats and dogs and dark dark dark. You're heading into summer yes? We're heading into winter. Uggh.

i dont know how you guys do it ? (winter)
but you lot are made of tough stuff
just remember that !

beautiful warm day here today after a week of rain
weeds growing like crazy and tomatoes still not planted
the washing is as stiff as a board from the line
.....snow forcast down south for the weekend (farmers cant catch a break) so maybe you'll get some nicer wheather as a trade off

 

[Begonia]

i dont know how you guys do it ? (winter)
but you lot are made of tough stuff
just remember that !

beautiful warm day here today after a week of rain
weeds growing like crazy and tomatoes still not planted
the washing is as stiff as a board from the line
.....snow forcast down south for the weekend (farmers cant catch a break) so maybe you'll get some nicer wheather as a trade off

From what little I know of your fair country, it looks and sounds beautiful!!
The weather is wonderful too, I reckon.
I'll head over and help with those tomatoes

We're in the Hawaii of Canada, but it's still Northern so winters are dark, damp and chill. I can handle the chill but the short days are tough mentally, November being my least favorite month.

 

[Daisys and Diamonds]

From what little I know of your fair country, it looks and sounds beautiful!!
The weather is wonderful too, I reckon.
I'll head over and help with those tomatoes

We're in the Hawaii of Canada, but it's still Northern so winters are dark, damp and chill. I can handle the chill but the short days are tough mentally, November being my least favorite month.

it will be December before you know it
its actually just starting to get uncomfertaly warm tonight, we keep getting cold snaps then return to normal temperstures so dont get a chance to aclimatise
wanganui is actually the 4th most tenperate climate in the world
dont ask me who the top three are
its funny (to us) to think of north being colder

 

[missy]

i think @missy has bones issues
actually i think Queen Camila might have it, her mother did

anyway all the ladies are very friendly and nice
you all ready know all of them
i just couldnt keep up
but someone on there will be able to give you great advice

Hi Nikki, so I successfully reversed my OP with BHRT and my spine now has normal bone density

@Begonia ...if your sex hormones are low (estradiol, testosterone and progesterone) and that is the cause of your OP you too can improve your bone health. Just an FYI

 

[missy]

Hi all,

I know PS is a place with a lot of knowledge about all sorts of things, and I'm hoping some of you can weigh in on this.

I've got osteoporosis. I don't remember my... is it t-score? I'll be visiting the doctor soon and will ask. I've been on Allendronate for 4 years now. My latest bone scan shows increased osteoporosis. The doc sent a message so I'll ask more about what that means. Her message said continue with Allendronate. I'd hoped to go off of it, the side effects are unpleasant.

Can anyone weigh in on what our discussion should look like? I want to know what my numbers were when I started vs now. Is there any stabilization at all? How much has the osteo increased? Are there any other meds I can try?

I don't drink or smoke. Eat very healthy, exercise and incorporate weight-bearing exercise as often as my chronic back injury allows. These latest test results were hugely disappointing!
Sigh.

OP is a complex issue and I cannot explain it the way I would like to in a thread. But as succinctly as possible...you must find your cause(s) and address them to improve your bone health. For most women it is lack of the sex hormones. However there are other causes that could contribute greatly. A few...celiac disease, malnutrition, hyperparathyroidism, hyperthyroidism, certain bone diseases, etc. Rule out all possible causes and address your specific causes. As I wrote above menopause is a big cause...loss of estradiol and progesterone and testosterone. Good luck Begonia and if you have any questions I would be happy to try to answer them for you

 

[missy]

@Begonia

BHRT

Just exploring this topic and I know nothing about it. Are there any PSers who are taking bio identical hormone replacement therapy who are willing to share info with me? I am way past the beginning of menopause (6-7 years post) and not sure if it is too late and not sure this would even be a...

www.pricescope.com

 

[Begonia]

Hi Nikki, so I successfully reversed my OP with BHRT and my spine now has normal bone density

@Begonia ...if your sex hormones are low (estradiol, testosterone and progesterone) and that is the cause of your OP you too can improve your bone health. Just an FYI

I'm so afraid of cancer. Does it raise the risk? My Mom, brother, grandma, her sister all had cancer and it killed them.

 

[Begonia]

@Begonia

BHRT

Just exploring this topic and I know nothing about it. Are there any PSers who are taking bio identical hormone replacement therapy who are willing to share info with me? I am way past the beginning of menopause (6-7 years post) and not sure if it is too late and not sure this would even be a...

www.pricescope.com

I'll read this. I remember this now...

 

[missy]

I'm so afraid of cancer. Does it raise the risk? My Mom, brother, grandma, her sister all had cancer and it killed them.

No. Bio identical hormones do not cause cancer. Do you have a loupe troop account? I want to link you to an excellent fb group on bhrt.

 

[Begonia]

Hi Nikki, so I successfully reversed my OP with BHRT and my spine now has normal bone density

@Begonia ...if your sex hormones are low (estradiol, testosterone and progesterone) and that is the cause of your OP you too can improve your bone health. Just an FYI

Does it raise your cancer risk? I have so many immediate family members who have died from cancer, and I have dense breast tissue. I'm a bloody AA, so how that's even possible... just being a bit dry, I get that's not how it works.

 

[Begonia]

OP is a complex issue and I cannot explain it the way I would like to in a thread. But as succinctly as possible...you must find your cause(s) and address them to improve your bone health. For most women it is lack of the sex hormones. However there are other causes that could contribute greatly. A few...celiac disease, malnutrition, hyperparathyroidism, hyperthyroidism, certain bone diseases, etc. Rule out all possible causes and address your specific causes. As I wrote above menopause is a big cause...loss of estradiol and progesterone and testosterone. Good luck Begonia and if you have any questions I would be happy to try to answer them for you

I hope I can convince my doctor to dig more deeply. They're so resistant with me (in my experience) in our health care system. Sure, it's free, but they only run the most rudimentary tests. I'll try to read up more so I can present a good argument. If I can convince her to run more, and it is sex hormones (I went into menopause a 41, doc didn't order bone density exam until 50), and I elect not to take hormones... ?

 

[missy]

Does it raise your cancer risk? I have so many immediate family members who have died from cancer, and I have dense breast tissue. I'm a bloody AA, so how that's even possible... just being a bit dry, I get that's not how it works.

Hi Begonia, I answered you above. Here it is again

No. Bio identical hormones do not cause cancer. Do you have a loupe troop account? I want to link you to an excellent fb group on bhrt. You want to learn all you can to make the best decision for you

 

[Begonia]

Hi Begonia, I answered you above. Here it is again

No. Bio identical hormones do not cause cancer. Do you have a loupe troop account? I want to link you to an excellent fb group on bhrt. You want to learn all you can to make the best decision for you

Thank you! I posted it, didn't see it and posted again. Then it appeared LOL.
I may have a Loupetroop account. I'll check once I get home! Thank you @missy.

 

[tyty333]

Hi Nikki, so I successfully reversed my OP with BHRT and my spine now has normal bone density

@Begonia ...if your sex hormones are low (estradiol, testosterone and progesterone) and that is the cause of your OP you too can improve your bone health. Just an FYI

Hey @missy Do they check for these (highlighted above) during the regular bloodwork screening or is this something that
usually has to be asked for? Just wondering if you know. Of course, I just did my checkup/bloodwork last month so probably
no reason to ask for more bloodwork unless there is some problem. I'm currently taking Boniva.

 

[missy]

Hey @missy Do they check for these (highlighted above) during the regular bloodwork screening or is this something that
usually has to be asked for? Just wondering if you know. Of course, I just did my checkup/bloodwork last month so probably
no reason to ask for more bloodwork unless there is some problem. I'm currently taking Boniva.

Unfortunately no, unless your healthcare professional is knowledgeable about this area. Most are not. Are you post menopausal? If you are your sex hormone levels will be low. And low sex hormones are the most common reason for OP. If you are not post definitely get them tested. And optimal is more than being in range. For bone health we need estradiol levels of 50-60 pg/ml at minimum. Free testosterone we want to see top of lab range and we want a robust Progesterone level starting at 1/10 in ng/ml to e2 in pg/ml and then adjust from there according to signs and symptoms

 

[Daisys and Diamonds]

Hi Nikki, so I successfully reversed my OP with BHRT and my spine now has normal bone density

@Begonia ...if your sex hormones are low (estradiol, testosterone and progesterone) and that is the cause of your OP you too can improve your bone health. Just an FYI

that is wonderful to hear MIssy

 

[tyty333]

Unfortunately no, unless your healthcare professional is knowledgeable about this area. Most are not. Are you post menopausal? If you are your sex hormone levels will be low. And low sex hormones are the most common reason for OP. If you are not post definitely get them tested. And optimal is more than being in range. For bone health we need estradiol levels of 50-60 pg/ml at minimum. Free testosterone we want to see top of lab range and we want a robust Progesterone level starting at 1/10 in ng/ml to e2 in pg/ml and then adjust from there according to signs and symptoms

Thanks @missy ! Yes, post menopausal...I'm sure my sex hormones are low. My last hip Dexa scan came back as -2.3 down from -2.0
two years ago. My Lumbar spine actually went to -2.4 from -2.6 two years ago. Makes me wonder if it was done correctly. Like I said,
I am on Boniva. Was hoping to just maintain. I'm going to ask my Doc to check my sex hormones at my next physical or sooner if I
have to go in for something. I'm going to print your post so I have a reference for those hormones.

I walk 2 miles daily and do a little bit of resistance exercise. I think I'm going to buy some of those big rubberbands/exercise bands
and see if I like using them. Does anyone use those and have any recommendations of what to buy/what not to buy?

 

[missy]

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”

 

[Demon]

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.

 

[tyty333]

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.