Is Osteoporosis reversible in post menopausal women?

Posted by leeosteo @leeosteo, Jan 28, 2023

I'm relatively new to this support group. I'm post menopausal with osteoporosis. I've been reading various group discussions here and doing a little bit of research via Mayo Clinic, Bone Health & Osteroporosis Foundation (BHOF), WebMd, and Drugs.com.

My simple question is: Can osteoporosis be reversed in post menopausal women (with no secondary medical issues) through diet and exercise?

In reading through this groups discussion on meds it seems the meds only buy you time.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

@fearfracture

I hope your fractures have healed and I can understand how you would disagree with my comment "Are you fracturing or have you had any fragility fractures? If you aren’t fracturing, there is no life-or-death situation." But that was directed to one person, a person who already has an osteoporosis diagnosis, meaning she is aware of her condition, and who seems to be taking action to prevent fractures.

In your case, it sounds like you had not yet been diagnosed w/ osteoporosis, meaning when you fractured. Am I correct? Did you 1st discover you had bone loss when you fractured?

It wasn’t until approximately 2.5 yrs after my diagnosis and after discussing my osteoporosis with 2 different doctors that I learned what my t-scores actually meant. In 2019, my lumbar spine t-score was -3.9. Both my PCP and my endocrinologist discussed my BMD with me and never explained anything. In the fall of 2021, I had an appt with a random teledoc dr. and he explained that every standard deviation was 10%.

From July 2019 through November 2021, I made zero adjustments to my physical activities. When I was diagnosed, I was in the middle of moving—lifting boxes, moving furniture. Additionally, in the fall of 2021, prior to my teledoc appt. I spent a good deal of time digging up well established bushes—root ball and all. It was grueling work. I was bending over and jumping up and down on a shovel spade. Fortunately, I had no issues.

As soon as that teledoc dr. explained that my lumbar spine BMD was approximately 39% less than the average 30 y.o., I spent a good deal of time researching how to move to protect my bones.

Two basic things ppl with osteoporosis should avoid are forward flexion of the spine and twisting of the spine. I used to bend over and touch my forehead to my knees and place my palms on the floor—I don’t do that anymore.

I practiced doing hip hinges while holding a yard stick to my back to keep it in line and I watched videos about how to do everyday tasks when you have osteoporosis: laundry, getting in and out of the car, the dishes, etc.

The thing about osteoporosis is doctors take DEXA scan results and act like T-scores mean the same thing for everyone and the truth is they don’t.

I frequently read posts from ppl whose t-scores are better than mine but they are fracturing. Fragility fractures are a bigger indication of bone quality issues than DEXA scan results.

One DEXA scan tells us very little about our bones. It can’t even show bone loss. It only shows approximate areal density of one’s bones at one point in time. Without more info, there is no way to know what that really means. I would bet a million bucks that my t-scores, even between the ages of 25-30, were never 0, meaning I believe my bones were probably always below the mean.

I’m not against taking osteoporosis meds when necessary but I am against taking any medications without a good idea that what you are taking is right for your condition.

Bisphosphonates don’t work for everyone, and I have seen some info that seems to suggest that taking bisphosphonates before anabolics reduces the effectiveness of the anabolics. Additionally, since it seems that it’s not a good idea to take any osteoporosis meds for too long and since other osteoporosis meds need to be followed by bisphosphonates, it seems that taking a little time to make sure there are no other issues that need to be addressed (parathyroid, thyroid, Celiac, T2D, etc) and finding the best solution is better than just taking an osteoporosis med just because that is the only “answer” most doctors can come up with.

In my case, I also have hypothyroidism. It was diagnosed in 2017 and if doctors did their jobs, it would have been caught decades before—there is even a chance I could have prevented it.

I started taking levothyroxine in 2017 and because my endocrinologist failed to do proper testing before prescribing osteoporosis meds, I’m now left wondering if my bones had started to improve on their “own” once I had the hypothyroidism diagnosis and started treating it. My own experience is just another example of why proper testing is critical before just starting meds.

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I agree completely that doctors tend to go with the most recent medicines for answers without doing any further testing. I've had to do tons of research and I don't like the side effects that can come with prolia, not to mention the fact that it's for a lifetime and if you get off of it you have to go directly on another medicine to keep from fracturing. If I had been made aware that during the first 5 years of menopause is when women tend to lose most of their bone mass I would have made a better effort to exercise more and get more calcium in my diet. I was put on Boniva after my first year when I had been diagnosed with osteopenia. Had no idea about anything other than this medicine would take care of it. My PCP finally told me that after 5 years I needed to get off of it. Did that weaken my bone mass? I don't know and they don't either because my last DEXA scan was after I had a fracture (from trauma). I'm just doing a huge eye roll though because NOW they want me to take huge amounts of calcium and vitamin D. A little late I think.

REPLY

So I had a very disappointing but not surprising appointment with an endocrinologist. I was referred to Ruth Horowitz, but she is no longer taking new patients so I got another doctor. I took all my test results and copious notes from Keith McCormick's book with me. I had been very impressed with Dr. Horowitz when she spoke at a webinar conference recently on osteoporosis and felt that she was pretty up to date with the latest findings. Unfortunately, the doctor I saw didn't appear to be up to date. While she was nice enough, she was rather dismissive of most of the tests recommended by McCormick and didn't even know what an Echo Light Scan was. She said she would advise a bisphosphonate, but didn't even mention HRT, which according to a talk I just saw on this issue, is probably the right choice for me at 55. Here's a link to this if anyone is interested.

https://gbmc.webex.com/recordingservice/sites/gbmc/recording/e6111214853f103bbf7e005056811e38/playback

I was hoping to get another DXA scan with the vertebral fracture assessments and TBS score, but again she says I don't even need another one until September (which would be a year from my last one). So, I am due to see my gynecologist within the next month and will ask about low dose transdermal HRT to start, with the idea of ramping up to the standard dose if I don't have too many side effects from it (I tend to be extremely sensitive to any new drug, so I start slow and low). I also have a yearly physical scheduled with my PCP in early April and will ask if he will order the tests McCormick recommends whether or not they are covered by insurance. Lastly, my husband recently went to have extensive allergy testing done due to constant post nasal drip, which I also suffer from, and he says they tested for all kinds of things including foods, etc., and insurance paid for it. So, I am going to make an appointment with them and see if I can get tested for gluten sensitivity, lactose intolerance, etc.

Once I have all the results from everything that insurance will pay for, I then plan on making copies of everything and sending them to Dr. McCormick as instructed on his website, for his assessment and pay out of pocket $350 for his recommendations as to what additional tests I should still get. I am willing to pay out of pocket if necessary but figure I can try all these various routes and still have much more complete information by the end of April or May of this year. I'd welcome any and all thoughts on my plan and will update on this site as time goes by.

For now, I am not on any bone medications. I have upgraded most of my supplements to the Wellena brand, which I hope will be of even higher quality than what I've been taking, which is Vitamin Shoppe. Again, I am willing to pay for supplements that are really helping me, but they are expensive, and it would be nice to have someone to consult with who can tell me exactly how much of a given thing I need to take and in what form. Most doctors provide little to any guidance on this.

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@windyshores

@contentandwell as I have written, I am in the same situation with kidneys. I forget if I told you that my doc is going to start with 1/4 dose Reclast and either do it more frequently or if I tolerate it, do more at the same time. Hydration, premeds, and slow infusion.
I also have serious GERD (GFR 49-53.)
Please let me know what you end up doing!

I have 2 1/2 months left on Tymlos. Did you do 18 months or two years?

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Hi, @windyshores My endocrinologist wants to start with a half dose, slow infusion. I think the slow infusion is not related to it being a half dose, I think that's simply because it causes fewer side effects than a faster infusion, but I could be wrong about that. I thought she was checking with my transplant team but apparently she expected me to do that. When I finally realized that I sent them a message but haven't heard back yet. I stopped Tymlos a little over a month ago so I really want to get moving on something that will preserve my gains.

I did 23 months on Tymlos. Part of my reason was that if I wrapped around to a 24th month I would have a very large deductible to meet and my doctor did not feel it would make enough difference to do that extra month. Also, although I had no side effects for a long time I developed very achy leg muscles and joints after being on Tymlos for a while - it took more than a year for that to develop.
JK

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@contentandwell

Hi, @windyshores My endocrinologist wants to start with a half dose, slow infusion. I think the slow infusion is not related to it being a half dose, I think that's simply because it causes fewer side effects than a faster infusion, but I could be wrong about that. I thought she was checking with my transplant team but apparently she expected me to do that. When I finally realized that I sent them a message but haven't heard back yet. I stopped Tymlos a little over a month ago so I really want to get moving on something that will preserve my gains.

I did 23 months on Tymlos. Part of my reason was that if I wrapped around to a 24th month I would have a very large deductible to meet and my doctor did not feel it would make enough difference to do that extra month. Also, although I had no side effects for a long time I developed very achy leg muscles and joints after being on Tymlos for a while - it took more than a year for that to develop.
JK

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My doc is having me do only 18 months and that is what patient assistance pays for. Hmmmm. I will do 1/4 dose also with slow infusion. Yes, the slow infusion is supposed to help with immediate side effects.

Interesting that you have muscle and joint pain after a year. I just went to the orthopedist this morning for that reason!

You are ahead of me....I look forward to hearing what happens!

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@kirstenlheld

So I had a very disappointing but not surprising appointment with an endocrinologist. I was referred to Ruth Horowitz, but she is no longer taking new patients so I got another doctor. I took all my test results and copious notes from Keith McCormick's book with me. I had been very impressed with Dr. Horowitz when she spoke at a webinar conference recently on osteoporosis and felt that she was pretty up to date with the latest findings. Unfortunately, the doctor I saw didn't appear to be up to date. While she was nice enough, she was rather dismissive of most of the tests recommended by McCormick and didn't even know what an Echo Light Scan was. She said she would advise a bisphosphonate, but didn't even mention HRT, which according to a talk I just saw on this issue, is probably the right choice for me at 55. Here's a link to this if anyone is interested.

https://gbmc.webex.com/recordingservice/sites/gbmc/recording/e6111214853f103bbf7e005056811e38/playback

I was hoping to get another DXA scan with the vertebral fracture assessments and TBS score, but again she says I don't even need another one until September (which would be a year from my last one). So, I am due to see my gynecologist within the next month and will ask about low dose transdermal HRT to start, with the idea of ramping up to the standard dose if I don't have too many side effects from it (I tend to be extremely sensitive to any new drug, so I start slow and low). I also have a yearly physical scheduled with my PCP in early April and will ask if he will order the tests McCormick recommends whether or not they are covered by insurance. Lastly, my husband recently went to have extensive allergy testing done due to constant post nasal drip, which I also suffer from, and he says they tested for all kinds of things including foods, etc., and insurance paid for it. So, I am going to make an appointment with them and see if I can get tested for gluten sensitivity, lactose intolerance, etc.

Once I have all the results from everything that insurance will pay for, I then plan on making copies of everything and sending them to Dr. McCormick as instructed on his website, for his assessment and pay out of pocket $350 for his recommendations as to what additional tests I should still get. I am willing to pay out of pocket if necessary but figure I can try all these various routes and still have much more complete information by the end of April or May of this year. I'd welcome any and all thoughts on my plan and will update on this site as time goes by.

For now, I am not on any bone medications. I have upgraded most of my supplements to the Wellena brand, which I hope will be of even higher quality than what I've been taking, which is Vitamin Shoppe. Again, I am willing to pay for supplements that are really helping me, but they are expensive, and it would be nice to have someone to consult with who can tell me exactly how much of a given thing I need to take and in what form. Most doctors provide little to any guidance on this.

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I am not a medical person. However, I believe I had purchased something years ago over the counter about HRT. I remember that it had precautions to it and I believe that it may do something to people's hearts in the negative. Please check with your doctor before getting anything.

I had a Burst Compression Lumbar I Fracture which was extremely painful. I have a few things that the spine surgeon can fix but he could not do surgery due to Osteoporosis which I wasn't aware that I even had. I am on Evenity shots now. I have had no heart issues so my physician felt that I was a good candidate for this drug. I know what you mean about drugs causing problems but I wish I had never slipped and fell to get my injury. It has destroyed my life.

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@fearfracture

It sounds like you have your full DEXA report but it doesn’t sound like there is a trabecular bone score. From what I’ve read, even if your imaging center has TBS capabilities (most imaging facilities do not), your doctor would have had to specifically requested a DEXA w/ TBS.
Additionally, there is a report for TBS that clearly states a TBS for total lumbar spine and for L1 through L4 individually.

The nutrients thing is a bit overwhelming. It’s great that you eat nutritious foods. Mira and Jayson Calton (Rebuild your Bones) pretty much say everyone is vitamin/mineral deficient because it’s impossible to meet the RDAs on a diet that doesn’t involve consuming a ton of calories. I tried talking to a dietitian in December 2021 but honestly, she wasn’t much help.

Your doctor(s) should be willing to work with you and order the BTM tests for you. If your endocrinologist refuses ask your PCP or OB/GYN or go to a telehealth doctor.

I haven’t made up my mind about HRT quite yet but if I take that route, I will post about my experience/results.

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Fearfracture, have you every had an NTX bone marker test? I've had two (2020 - 24nmol & 2023 22 nmol). Both are below the range (26-124 nmol). I don't quite understand this number. If I read this correctly my bone is not breaking down quickly, yet my doctor wants to put me on Prolia. I've asked my PCP to see an endrocrinologist because he can't explain this. I'm ok with meds if needed, however, I want to ensure I'm taking the right med for the right reason).

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@leeosteo

Fearfracture, have you every had an NTX bone marker test? I've had two (2020 - 24nmol & 2023 22 nmol). Both are below the range (26-124 nmol). I don't quite understand this number. If I read this correctly my bone is not breaking down quickly, yet my doctor wants to put me on Prolia. I've asked my PCP to see an endrocrinologist because he can't explain this. I'm ok with meds if needed, however, I want to ensure I'm taking the right med for the right reason).

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I wish I could help but I’m looking for help with my BTMs results also. I had my BTMs tested for the 1st time in November 2022. My endocrinologist failed to order BTM tests prior to starting me on bisphosphonates so I don’t have true BTMs baseline numbers. The BTM labs that I had done in November 2022, were done exactly 1 year after my 1st and, so far, only zoledronic acid infusion, which was rec’d in November 2021.

The results of my Fasting BTM tests are

C-Telopeptide, Serum, 179 pg/mL

Reference Range:
Premenopausal women: 34 - 635
Postmenopausal women: 34 - 1037

---------

Osteocalcin, Serum, 8.8 ng/mL

Reference Range:
Premenopausal women: 4.9 - 30.9
Postmenopausal women: 9.4 - 47.4

---------

N-Telopeptide, Serum, 15.7 nmol BCE/L

Reference Interval: 6.2 - 19.0

---------

Propeptide Type 1 Collagen, 20 ug/L

Reference Range:
Premenopausal women: 19 - 83
Postmenopausal women: 16 - 96

———————

The only comment my endocrinologist made, when I asked him to review my BTM lab results, was that my Osteocalcin was low and that you want it to be higher.

When I left his office I looked up osteocalcin to see how I could improve it. Note, my endocrinologist wrote an order for me to have another zoledronic acid infusion in November 2022–I chose not to have it. When I looked up osteocalcin, the info I found says that bisphosphonates lower osteocalcin. Why, if my endocrinologist thinks my osteocalcin is too low, is he prescribing another zoledronic acid infusion? Additionally, he has been treating my hypothyroidism since 2018. Hypothyroidism also reduces osteocalcin. Shouldn’t an endocrinologist know this?

So, as I said, I’m pretty much in the same position you are in, in other words, stuck with a doctor who’s not up to snuff.

I’m considering calling the manufacturer of zoledronic acid again. Yes, I have called them before with other questions.

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@fearfracture

I wish I could help but I’m looking for help with my BTMs results also. I had my BTMs tested for the 1st time in November 2022. My endocrinologist failed to order BTM tests prior to starting me on bisphosphonates so I don’t have true BTMs baseline numbers. The BTM labs that I had done in November 2022, were done exactly 1 year after my 1st and, so far, only zoledronic acid infusion, which was rec’d in November 2021.

The results of my Fasting BTM tests are

C-Telopeptide, Serum, 179 pg/mL

Reference Range:
Premenopausal women: 34 - 635
Postmenopausal women: 34 - 1037

---------

Osteocalcin, Serum, 8.8 ng/mL

Reference Range:
Premenopausal women: 4.9 - 30.9
Postmenopausal women: 9.4 - 47.4

---------

N-Telopeptide, Serum, 15.7 nmol BCE/L

Reference Interval: 6.2 - 19.0

---------

Propeptide Type 1 Collagen, 20 ug/L

Reference Range:
Premenopausal women: 19 - 83
Postmenopausal women: 16 - 96

———————

The only comment my endocrinologist made, when I asked him to review my BTM lab results, was that my Osteocalcin was low and that you want it to be higher.

When I left his office I looked up osteocalcin to see how I could improve it. Note, my endocrinologist wrote an order for me to have another zoledronic acid infusion in November 2022–I chose not to have it. When I looked up osteocalcin, the info I found says that bisphosphonates lower osteocalcin. Why, if my endocrinologist thinks my osteocalcin is too low, is he prescribing another zoledronic acid infusion? Additionally, he has been treating my hypothyroidism since 2018. Hypothyroidism also reduces osteocalcin. Shouldn’t an endocrinologist know this?

So, as I said, I’m pretty much in the same position you are in, in other words, stuck with a doctor who’s not up to snuff.

I’m considering calling the manufacturer of zoledronic acid again. Yes, I have called them before with other questions.

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Fearfracture, did you have to twist your dr's arm to get these BTMs? My PCP won't get into these "boutique" tests. I met with him for a second time and we agreed I go see an endocrinologist. I'm really hoping she will help me. It just doesn't make sense to take Prolia when my NTX is below the range. Yet my DXA results have worsened.

I did have a 24 hr calcium urine test in 2020 and it was abnormally high. I'm wondering if I'm 1) not absorbing calcium/other nutrients, 2) the osteoblasts are not working correctly. I don't want to take any meds until these questions are answered.

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@leeosteo

Fearfracture, did you have to twist your dr's arm to get these BTMs? My PCP won't get into these "boutique" tests. I met with him for a second time and we agreed I go see an endocrinologist. I'm really hoping she will help me. It just doesn't make sense to take Prolia when my NTX is below the range. Yet my DXA results have worsened.

I did have a 24 hr calcium urine test in 2020 and it was abnormally high. I'm wondering if I'm 1) not absorbing calcium/other nutrients, 2) the osteoblasts are not working correctly. I don't want to take any meds until these questions are answered.

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No, I didn’t have to twist his arm. If your doctor isn’t willing to do “secondary” testing to make sure you are receiving the correct treatment, the only option is to look for another doctor. Rheumatologists also treat osteoporosis.

Note, I’m being treated for 2 conditions, hypothyroidism and osteoporosis. Hypothyroidism effects bones.

The pathetic part is I can get my endocrinologist to order labs but he is so incompetent that he can’t help interpret the results so I’m left trying to figure things out for myself.

Someone in another osteoporosis group recently posted, “I asked my rheumatologist about "normal" BTMs, which I have, and bisphosphonates. Specifically, my CTX (bone reabsorption marker) was in the 200-something range. He said he wouldn't advise them for me.”

I think my interpretation was correct, meaning my BTMs are not elevated and bisphosphonates therefore are probably not the right option for me. The mind-blowing part is taking bisphosphonates before anabolics reduces the effectiveness of the anabolics so my endocrinologist screwed this up. Highly annoying.

The only thing stopping me from letting him have it is that I don’t want to take any osteo-meds. I’m leaning towards trying HRT. I spent yesterday reading

https://www.themenopausecharity.org/2022/04/19/starting-or-continuing-hrt-many-years-after-your-menopause/

and

https://theros.org.uk/information-and-support/osteoporosis/treatment/hormone-replacement-therapy/
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My CTX and P1NP weren't helpful. I had severe osteoporosis but those tests were in the normal range. They could be used to monitor effectiveness, I was told by Dr. McCormick, but no docs in my experience do that.

High calcium can indicate a problem with parathyroid.

MD's prescribe bisphosphonates first as "front line" before anabolics because that is what insurance dictates, and it has probably become habitual. Despite the studies that anabolics are better taken first. There are ways for us to get around this, including patient assistance programs, and we need to ask our docs for Rx's.

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