Hello,
I am new to this forum. Looking for answers on how to handle my osteoporosis without taking the drugs. I had a DEXA yesterday and my scores have gotten worse despite a strict diet and exercise plan. Looking for someone in Seattle, WA area that does REMS testing. My DEXA scores were T score -4.2 and hip T sore -2.8. Advice?
Is -4.2 your spine t-score? There's a HUGE difference between that and your hip score, suggesting one or both could be wrong. Do you have arthritis in your hips (can make bone density look better than it is) or curvature of the spine (can make the spinal reading inaccurate)? Can you think of any other reasons why your spine score might be so much worse, for example do you use a wheelchair?
I do have scoliosis from childhood. Not terrible but noticeable.
No other reason to figure out why spine T score was -4.2
That could be enough to give a false spine reading, because it could make it very difficult to align the spine correctly.
you give me hope!
wow- I have scholiosis since childhood too - my Numbers are worse than Bonesinseattle, mine are -4.7 in spine and -3.4 left hip and -3.1 right hip
If you check out my bio there is a link to my DEXA results (3 yrs, 2019, 2021, and 2022) and more importantly links to helpful info, especially for those who are newly diagnosed. One link is to a list of tests for “secondary” causes of osteoporosis which you should have or at least discuss w/ your doctor—if your bone loss is due to Celiac disease or parathyroid gland issues etc, osteoporosis meds will NOT “fix” your bones, you would need to address the underlying issue 1st. Note, Mira and Jayson Calton don’t buy into the theory of there being a primary or age related osteoporosis—their belief is, if osteoporosis was just due to age or getting older, then eventually everyone would get it. Everyone does not get osteoporosis.
Another of the links under my bio is to a bone turnover marker (BTM) test pdf that was given out a during a BTM webinar I attended. There is some overlap between these tests and the link to the secondary causes of osteoporosis tests. You need to have BTM bloodwork done BEFORE taking any osteoporosis meds to see what is causing your bone loss and to give you an accurate baseline for comparison if you do decide to take osteoporosis meds. Many osteoporosis drugs including all bisphosphonates work by slowing osteoclasts (bone resorption or breakdown) if you BTMs don’t show high levels of bone turnover, bisphosphonates might not work for you. Make sure you discuss this w/ your doctor.
Also, before taking any osteoporosis-meds, go to your dentist, having a complete oral exam and discuss taking osteoporosis-meds w/ your dentist.
Also, if you aren’t currently, you might consider hormone replacement therapy. Many women are able to slow bone loss or increase bone density with HRT. It’s worth discussing w/ your doctor.
When I started researching how I could improve my bones on study I found in the BJM stated (paraphrasing) the biggest difference between who fractures and who doesn’t isn’t who has osteoporosis but who falls.
Probably the best things anyone can do to prevent fractures is to work on balance and create a clutter free living space to prevent falling. As we age, regular eye exams and hearing tests are important. If you can’t see or hear properly, you are more likely to take a spill.
Since you are in Seattle, you might was to look up Echolight, the company that manufactures REM scanners. From what I’ve read REM scanners give more in-depth info about quality than Hologic and GE Lunar DEXA scanners do.
If you can’t find an REM scanner near you, you might look for an imaging center that offers DEXA w/ TBS (trabecular bone score) capabilities. TBS will give you a better indication of bone quality. To find a DEXA w/ TBS go to medimapsgroup.com/find-cent... and submit the form. They got back to me within 30 minutes.
Also, you may consider looking into OsteoStrong and the Marodyne LiV (low intensity vibration) platform. Note, I do not use either of these. If there were an OsteoStrong w/i 2 hours of my home, I would join their program. Unfortunately, the closest is 4.5 hours away. If you search “Marodyne LiV Margaret Martin Dr. Ruben” you should find video interviews of Martin interviewing Ruben. The research behind the Marodyne LiV platform was funded by NASA and when I asked my endocrinologist what he thought about using LIV to treat bone loss, he said it looked very promising. WBV (whole body vibration) is NOT the same as LIV and should be avoided. The Marodyne LiV platform is pricey and because it doesn’t have FDA approval, it’s not covered by insurance. The price is the only reason I have not purchased one yet but I may get one in the future, $3000 for the Marodyne LIV platform is a lot less expensive, and less painful, than hip and spinal fractures 
Thank you for all your information!
I have been trying to connect to Echolight. Nothing yet. Did watch video on Marodyne - looks promising!
Thanks & take care!
You too!
Here is the contact info for the lady at Echolight, who responded to my January 2022 email inquiry.
Victoria Baldwin RT(R), RDMS, RVTClinical Sales SpecialistEcholight Medical LLCvbaldwin@echolightmedical.comecholightmedical.com
I have an osteo strong place near me but I thought there are many risks of fractures and jaw damage
I just replied to your other response, given your lumbar spine t-score, -4.7, you would definitely want to talk w/ your doctor 1st.
hi BonesinSeattle! I have been on pred for three years and am on 1 mg today for PMR. I had osteoporosis and was able to move back to osteopenia by taking Calcium , B2 and K3 and I asked my doc to put me on estradiol a hormone which I take every third day. I also walk, play pickle ball and golf. I hope that works for you.
Thank you!
The crucial question is your fracture risk. And your bone density is just one component of that. (And fractures happen at all bone densities -- not just those in the osteoporosis range.
In addition to bone density, age, race, gender, menopause, medical conditions, medications, fracture history, family history, lifestyle factors, and a list of other factors, go into the calculation of your fracture risk.
Even with no other risk factors, a white woman in the US crosses from low risk to moderate risk at around age 65, and from moderate risk to high risk at about age 80. The other factors, such as bone density, can raise (or lower) the risk.
Remember, osteoporosis is a chronic medical condition, that can be managed, but cannot be "cured." Even if you are able to move your bone density out of the osteoporosis range, you still have a chronic medical condition requiring management (and possibly medication). For example: even if you are able to decrease your blood pressure with medications and other strategies, you still have high BP
How much you can influence your bone density with non-pharma treatments will really depend on your starting point and how much effort you put in. AND how much is realistic.
What might work at age 45 may not be enough at 70. What works early in menopause may not be enough later in postmenopause. How much you can change at -2.5 is different at -4.2.
Except in drug company commercials, no one goes skipping across a meadow saying give me medications. People who take medications for any condition do so because the medications are better than the alternative.
Figure out your risk using one of the available fracture risk calculators and make a plan. (The American Bone Health calculator also provides a planning tool.)
The best summary of a "plan" that I have read was in BoneTalk a couple of years ago:
bonetalk.org/articles/its-w...
YogaLibrarian, I have a question about who should take bisphosphonates. If someone has osteoporosis but all of their bone turnover blood marker tests are in the normal range, are bisphosphonates the right option?
My understanding is that the thinking has changed about bisphosphonates. My gynecologist immediately suggested them for my spine (-3.3) but my rheumatologist (much more up to date on research) started me on an anabolic to build bone, to be followed by a bisphosphonate at beginning of Year 3. NB my spine TBS was quite low and prior to going on any medication I fractured! I should have paid more attention to TBS than Frax!
thanks for your advice. What is TBS and is anabolic a steroid?
TRABECULAR BONE SCORE (TBS) is a software add-on to DEXA that uses DEXA spine info to determine microarchitecture. The idea is to give you a more nuanced view of fracture risk. Here is a website to help you find a Dexa + TBS test center in your area: medimapsgroup.com/find-cent...
I use an anabolic medication called Tymlos, a synthetic version of a parathyroid hormone protein that is supposed to stimulate bone formation. The new thinking is to do this first and then use the bisphosphonate, which slows bone reabsorption, to keep the gains.
Hi, new to this website and trying to figure out this whole low bone density and osteoporosis stuff. Recently had a spinal compression fracture (have a -3.5 score). Recently saw bone doctor and he is recommending either Tymlos, Forteo or Evenity. He was favoring Evenity but just discovered insurance will not pay for it. This will be followed up by Prolia for 3 years and a Maintenace drug such as Evista after that. Any reason you picked Tymlos. Thank you
Be aware that depending where spinal compression fractures are, they can skew DEXAs and make BMD appear higher than it actually is.
I know you and I have "chatted" before on this site. I recognize your USERID. Unfortunately, I reply to so many ppl that I'm not sure of everything that we have previously shared so forgive me if I repeat myself.
2017 diagnosed with hypothyroidism - referred to my current endocrinologist. After tweaking dosage, have been taking 75 mcg levothyroxine daily. When I got the osteoporosis diagnosis in 2019, naturally, I saw the same endocrinologsist. I asked about natural remedies and he had no advice on this and he told me my bones were "horrible" and he prescribed alendronate. His reasoning was that bisphosphonates are usually the 1st line of drugs that are used and he didn't feel like there was enough data on the use of anabolics, meaning what happens to ppl 10 years later, etc. He basically said he felt like bisphosphonates were the "safer" option because they have been around longer. At his urging, I took alendronate for 1.5 years and then had 1 zoledronic acid infusion in November 2021. He expected me to have another infusion in November 2022. I have since come to realize that he is a subpar "doctor" and I chose not to follow his advice and I didn't have it the 2nd infusion. Side note, prior to taking the zoledronic acid infusion, I asked my OB/GYN for her opinion on my having a zoledronic acid infusion and her only response was, "Your endocrinologist is the expert."
I took the bisphosphonates at my endocrinologist's advice and from what I have since read, bisphosphonates reduce the effectiveness of anabolics, meaning if I were to switch to Evenity now, it would be less effective because the bisphosphonates are still in my system (they stay in you for 10+ years).
What I am trying to figure out is this (pretend for the moment that the only class of drugs available to treat osteoporosis were bisphosphonates), since bisphosphonates work by slowing bone loss, if someone's bone turnover marker's are in the normal range, should bisphosphonates even be prescribed. To me, it doesn't make any sense to give someone bisphosphonates if her bone turnover isn't high because that's what bisphosphonates are supposed to stop.
The other issue that comes into play for me is that I have hypothyroidism and I am just coming to understand how hypothyroidism effects bones. Hyperthyroidism speeds up bone turnover, hypothyroidism slows down bone formation.
My endocrinologist didn't do any testing before prescribing osteo-meds and I didn't know that there were other tests that he should have run so I have no bone turnover marker (BTM) baseline tests. However, 1 year, to the date, after my 1 zonedronic acid infusion, at my resquest, I had my BTM tested. Here is a link to the results of my BTM tests healthunlocked.com/american...
When my BTM results came in, I asked my endocrinologist to go over them. His only comment was that my osteocalcin was low and that is not good for bone formation. After my appt with him, which of course he rushed through because he doesn't have time for patients who ask questions, I came home and started looking up osteocalcin. The pdf I have on BTM s3.amazonaws.com/Food4Healt... clearly states that bisphosphonates lower osteocalcin and hypothyroidism lowers osteocalcin. Shouldn't the doctor who is treating my hypothyroidism and who is prescribing bisphosphonates to me know this!
I found an imaging center with TBS capabilities and had a DEXA w/ TBS in early December 2022. I did get my TBS results, but for some unknown reason, the imaging centers I deal with have the hardest time providing copies of full DEXA reports, so I am still waiting for that information.
My TBS results are posted at healthunlocked.com/american... Note, the DEXA with TBS was done on a Hologic scanner.
I also had a DEXA on the same GE Lunar scanner used for my previous scans. The result from my 3 GE Lunar DEXAs can be found here healthunlocked.com/boneheal...
Earlier today, I had an appt with an telemedicine doctor, through my insurance, to try to get help understanding my BTM results. Unfortunately, the doctor I met with flat out said she was unfamiliar with the tests so she couldn't really help me with them, but she is giving me a referral to a new endocrinologist so hopefully at some point in the future I will have a doctor who is willing to answer my questions and knows what she is doing.
Apologies, forgot to add, I asked my rheumatologist ( Dr. Stuart Silverman, Los Angeles) 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.
Thank you for posting. If I’m understanding correctly, your rheumatologist is saying that for ppl with BTMs that are not elevated bisphosphonates are not the answer.
I’m really leaning towards HRT at the moment. This is what I’ve been reading today
themenopausecharity.org/202...
and
theros.org.uk/information-a...
LOL—Good times.
On 1/31/23 I had a telehealth appt. The doctor I met w/ said she was unfamiliar w/ BTM labs and couldn’t help me with them. She did, however, write a referral for me to a new endocrinologist. On 2/3/2023, I called the new endocrinologist to see if they had received the referral. They rec’d it but they are no longer accepting new patients. I’ve been focusing on endocrinologists because I also have hypothyroidism but maybe I’ll try to get an appt with a rheumatologist instead to see if I can get better care.
this is the first I hear about anabolic option - who is this for and how do I know if it’s right for me ? My spine score is -4.7 I am age 59
Going just by your t-score, -4.7, yes, but it really depends on your particulars. If you have what is called “primary” osteoporosis, meaning bone loss that is basically said to be caused by menopause and nothing else is going on, then I (note I’m not a doctor) would think given your t-scores that you might benefit from anabolics (ex Evenity).
From what I’ve read, taking anti-resorptives (which includes bisphosphonates) before anabolics, reduces the effectiveness of anabolics.
Are you fracturing? or do you have or have you had any fragility fractures? And have you been fully tested for “secondary” causes of osteoporosis?
I have not been tested for secondary cause yet but I have my first appt with my new encrinologist in March.
I haven’t had any fractures that are caused by my osteoporosis.
I would get envenity but most people want the natural route.
Go to your appt prepared. If you look at my bio, there are several helpful links—specifically a link to a pdf on BTMs (bone turnover markers) and a link to a list of tests for secondary causes of osteoporosis.
Mira and Jayson Calton (caltonnutrition.com/ don’t believe that there is such a thing as “primary” osteoporosis, and frankly, I agree with them. The point that they make is, if osteoporosis were just a natural part of aging, then everyone would end up with it, but not everyone does. I think many doctors buy into the idea of “primary” osteoporosis because it’s an easy way to dismiss a predominantly female issue and do nothing more than to write a prescription for osteo-meds. Note, I’m not against osteo-meds when they are prescribed correctly, after proper testing, and to patients who don’t have other means of improving BMD, etc.
It’s great that you aren’t fracturing. You mentioned that you are 59. I’m assuming you’ve gone through menopause, and if this is correct, how long ago and did you do HRT?
I was 51. I don’t even know if those dexa Numbers are correct . Is that number purely from the dexa machine ?
Or they do an equation with your answers to questions.
I never did HRT. Some women are not small. The big women are big and strong and merry lifting heavy things and prevent osteoporosis . The small women often have not lifted as much weights or heavy things
I am going to a great dr . He’s not an osteoporosis specialist but I hope he does extra testing.
Have any of your doctors explained what t-scores are?
Basically, they are standard deviations from the mean, the mean being the BMD of an average healthy female 30 y.o. A +1 t-score means one’s BMD is 10% above average, which everyone in this forum would kill to have LOL. A t-score of -4.7 means BMD is 47% less than the average hlthy female at “peak” BMD age.
I’m not big either and although I weigh a little more than I used to I’m still well within the healthy weight range for my size. My lumbar spine t-score was -3.9 on my July 2019 DEXA and -3.6 on my December 2022 DEXA.
The problem with DEXAs is that they aren’t true density scans, they measure areal density. This is why I spent approximately 2.5 months trying to find an imaging center w/ DEXA w/ TBS capabilities and driving 5 hours to get to the one I found. TBS give a better indication of bone quality.
The medication question is a really complicated one. There is a lot of specialist knowledge and experience required to formulate the right medication strategy. I'm a retired librarian not a medical professional...🙂. And many of the people who post on this site have strong opinions, but not medical experience or expertise. This site provides a lot in interesting points to consider and possible questions to ask. But those should be used as talking points with you healthcare provider.
I've done a lot of reading about the various medications and treatment options, and it's very complicated. I have a hard time wrapping my head around the nuances.
And when you talk to your healthcare provider, you can and should be asking things like "why is this option the most appropriate for me, why this and not that.." etc.
Good luck.
New to all this and would love to connect with others!
newly diagnosed and anxious
AlgaeCal and Stronium Experience
Near Collapsing Spine
vitamins what’s good to take
