I have this rating of my lower lumbar-- -3.8
I understand this puts me in the osteoporosis category, but I'm wondering how bad it can get? I mean, what is the WORST T-score possible?
My fracture risk is calculated at 16 percent higher than for other women my age.
I don’t know how to compare severity, but that does seem like a terribly low score. My spine is -2.9 for comparison. Your score would definitely call for treatment with medication. I don’t think a lifestyle change would help at this point. Medication, exercise, the correct supplements, good diet.
Got it. For the record, I have NO PROBLEM taking the meds as advised (alendronate)...I am just looking for the bottom of the scale, really. I mean, if I'm at -3.8...what is the negative-ist number possible? (<That is horrible grammar, by the way.)
My lumbar spine was -3.9 in 2019 and -3.7 in 2021. I have the same question you have and have seen posts w/ lumbar t-scores at -5.0 and -4.8, so I guess you and I can be “happy” that our numbers are as bad as they could be.
I took alendronate for approximately 1.5 yrs and quit taking it the week of my 2nd DEXA scan in July 2021 because I was experiencing digestive tract issue. 1.5 yrs on alendronate did very little to help my BMD; however, my numbers did not go lower which is technically a “win”.
After a 4 month bisphosphonate holiday, I had my 1st zoledronic acid infusion in November 2021. Since then, I have made many changes to my diet, supplements and exercise routine.
Now, I’m trying to find the answer to this question (my doctor and pharmacist weren’t able to give me an answer), since bisphosphonates work by inhibiting osteoclasts (the breakdown of bone), if my next DEXA shows an improvement in BMD (t-scores) will that mean that my diet, supplement and exercising are causing the increase?
I'm asking the same question? How low is low? My spine is -3.4 and doctor pushing Fosamax very hard now. I'm 68 and trying now to improve diet, exercise program, strength training. Doctor says none of this will make any difference. That said, all those factors help maintain health, bone health and posture to avoid falls and fractures. My concern is the constant use of meds, off and on cycles of Fosamax until that no longer seems to work and then on to another med that has even more side effects. No one seems to answer my question of: does the fake fosamax bone get broken down and removed like normal old bone does? If not, it seems like the drugs throw off the normal bone cycle of making new bone and removing old bone. We know the fake bone isn't a strong and may fracture more easily than real bone. If that's true and the fake bone isn't removed, it seems over time one is more prone to fracture due to weakened bones. My mom took fosamax off and on for a decade in her 70's, fractured in her 80's several times and at 90 has a hump. I watched her do what doctors usually do to treat osteoporosis and I'm concerned her fake bones haven't done much for her. I feel lost and alone as to what to do.
I know exactly how you feel. I can’t get my head round the idea that stopping the body’s normal process of replacing old bone with new bone (even if the new bone isn’t being built up as quickly as it does in younger people) can possibly be the right thing to do.
As I understand it some of the various osteoporosis drugs such as bisphosphonates prevent the old bone from being removed which must mean that it isn’t possible for new bone to take its place.I had an elderly aunt who took bisphosphonates religiously - and she did it all exactly as she was told - she was a very determined lady but I watched her carry on crumbling for years.
I keep thinking that in years to come people will say ‘OMG I can’t believe that’s how they treated osteoporosis’.
Go to BetterBones.com and look up Cindi’s story. She was able to increase her BMD w/o drugs. Also, checkout Osteostrong.me. If there were an Osteostrong.me w/i a 2 hour drive of my home, I would sign up for their program.
Glad to see osteostrong mentioned! I have been going since May..I love it and hope it makes a difference for me.
Are you taking osteo-meds or skipping meds and just doing OsteoStrong?
Also please share your DEXA scores after your one yr OsteoStrong anniversary. I had one zoledronic acid infusion in November 2021 before discovering OsteoStrong and I’m waiting until my November 2022 DEXA scan before deciding what to do next.
My endocrinologist’s plan is for me to have a 2nd infusion this November. My current plan is to NOT get another zoledronic acid infusion. I’m waiting for my next DEXA to decide what to do next because I would like to know if the zoledronic acid “helped” my bones at all. I was never keen on meds and my endocrinologist kind of pushed me into them.
I keep asking this question but no one, including my endocrinologist, knows the answer: Since bisphosphonates inhibit osteoclasts (the breakdown of bone) but do not promote osteoblasts (the building of new bone), if after taking bisphosphonates one’s BMD improves, does that mean that all the other measures the person has taken to increase his/her bone density (exercise, weights, supplements, dietary changes etc) are the reason for the increase in BMD?
Anyways, this November I will reassess and decide on my next move. The closest osteostrong is 250ish miles too far to be a day trip, but there is a chance that in the feature I would consider somehow making it working (I have relatives in a city w/ an osteostrong so I might be able to work out an arrangement where I stay with them on and off).
No meds... had a hip replacement Feb 2022 and started once a week at Osteostrong in may...they tell me give it 6-12 months, so I hope mine will be better than the last dexa 2 years ago.
I’m rooting for you.
When I was 1st diagnosed with osteoporosis, I asked my endocrinologist, who I was already seeing because I also have Hashimoto’s thyroiditis, if there were a natural way to reverse my bone loss. He tossed out the standard take calcium, vitamin D3, walk & lift light weights—all of which I was already doing and all of which we all know isn’t nearly enough to prevent osteoporosis so these measures certainly aren’t enough to reverse osteoporosis—and he pushed the osteo-meds, saying my bones were “horrible” and I needed to do something immediately.
Approximately 2.5 years later, after 1.5 yrs on Alendronate and 1 zoledronic acid infusion, I discovered OsteoStrong on my own and decided to ask my endo if he’d ever heard of it. He had not, but when I explained that they use Osteogenic loading to help build bone, my endocrinologist said that he had looked into purchasing osteogenic loading equipment for his practice and it’s very expensive. I’m sharing this because, obviously, he thinks that osteogenic loading can help build bone (otherwise why would he even consider purchasing the equipment). So keep going and keep us posted.
I am with you on this one. At 66, with -3.2 in spine, I’ve obviously ignored the push over the years to go on these drugs. Now the endocrinologist encourages me to take the new bone-building drugs first, Forteo or Tymlos, and after that a maintenance drug like Reclast or Prolia. I really like this doctor; at least she listens to and understands my hesitancy, but she drew an extensive drug tree for me on paper, that was a “plan” for the rest of my life. Two years on this, three years on that, maybe a holiday, back on this for two years, etc. She got me up to age 85. It was depressing. That said…..I don’t want to be smug about not having fractured anything. That can change in an instant. I remain open-minded but skeptical and curious. I will read everything, talk to anyone, and then make a decision for another 6 months or a year. Right now, I’m amping up the diet, lifting weights, working on balance. It might not matter for density, but it will for strength and fall prevention. Next year, we will see.
I'm doing exactly what you are and waiting until I hit age 70 to make a final decision. The map of drugs was laid out for me as well. This never ending on and off drugs is depressing and unsettling in light of what others tell me who followed this routine. It literally is never ending until death. I am now in physical therapy to determine an appropriate weight lifting program to strengthen my bones and not harm my spine, already met with a nutritionist to see if I need to add anything to my diet (starting on eggshell powder for calcium along with adding some dairy into my diet, also being educated on proper posture and body mechanics to maintain my spine and avoid falling/fracturing. I plan to research all the meds over the next 2 years but not happy with what is the "usual" mix out there. It's obvious, this being primarily a "woman's" disease that so little research and new and safer drugs and trials are not available but this may change as more men are also dealing with osteoporosis.
The t-score is a statistical expression (standard deviation) of another measurement. If you understand statics that may all make sense. But stats was not one of may favorite courses.
Bone density is measured in grams per centimeter squared (gm/cm2) but expressed as a t-score (standard deviation). Theoretically, the "long tail" of a statistical curve could go out to infinity.
In reality (in humans) that will not happen. But I have never seen anything in the scientific literature that does give an endpoint.
Fracture is is calculated based on a number of variables, including age. Bone desnity is only one of them. White women, for eample, "age" into the moderate fracture zone at about age 65 (if all other factors are "normal").
You haven't mentioned your height and weight. People who are shorter and slighter may have t-score calculations that appear lower than they actually are because of the challenges of expressing a 3-dimensional object (bones) as a 2-dimensional number. It's important to work with a specialist who understands all the variables.
Don't worry too much about the lowest possible t-score number. Focus instead on fracture risk and how to created a bone health plan that includes lifestyle, diet, exercise, and medications to minimize your risk.
Yes, that's been my approach since diagnosed 10 years ago for osteoporosis at 58. I am in very good shape, take no meds, but am small bones and weight 122. I know this makes me more of a risk factor. My main concern is to not fracture and that's been my emphasis all along and also making my house fall free. I have fallen hiking and on icy patches in the past 5 years and never fractured or broken a bone in my life. I also don't understand why our bones are being compared to a healthy 25 year old male. Why would our bones not be impacted by aging like everything else in our body? No doctor answers that for me.
The t-score compares women’s bones to 25-30 y.o. females not males.
I can relate to all of you. My lumbar spine t score is also in the negative 3s.... and of course my doctor has been wanting to get me on Prolia but he has not given me a plan for after when I wouldn't be able to take Prolia anymore.... so far I have opted to not take anything because of all the side effects... I am otherwise a healthy 58 y/o woman and hoping for the best.... I also follow a healthy lifestyle and will continue to stay active for as long as I can without having to take meds that may or may not help. I also feel alone with all my questions and most of the time, doctors take these things so lightly and get even bothered by our hesitancy. I wish you all the best and let's continue supporting each other. Blessings to all!
My hips and spine are in the -3. I am 62 and have an appt with a specialist at the Mayo Clinic in a few weeks. I am curious to see what he says but I am against taking any drugs. I added vitamin k2 and magnesium to my vitamins and calcium that I was already taking and doing some exercise and of course praying about it. I refuse to be frightened into taking drugs that I would have to take forever that may do more harm than good. I am going to ask this doctor what he would take if it were him in this situation or suggest a family member to take just to hear the response but we all need to decide what we feel is best for us. This bone density is like my loss of hearing, it is a part of growing older and it didn’t happen overnight and it won’t go away overnight either. I always go home to think about and research these suggestions before making a decision. Besides I truly believe the doctors get a kick back from big pharma for pushing their drugs on us without caring how these drugs really might affect us. I am not going to focus on what might happen but will deal with one day at a time. Think positive thoughts = better state of mind, body and soul.
Would be interested to hear the outcome of your Mayo Clinic appointment!
I went to the mayo clinic doctor today and was surprised that he understands that I am not a fan of medication. He told me what was out there for treatments, Forteo, Fosomax, reclast, etc but then I mentioned that my primary doctor suggested Prolia and he said he would not recommend that for me, he might if i was older (I am 62) but not bow. He mentioned weight bering exercise, yoga, tai chi etc. and when I asked about a weighted vest or ankle weights when walking he said that was a good idea. I asked about hormone replacement therapy and mentioned bio identical treatments but he didn’t comment on the bio identical but did say that HRT might be good but I would have to consider any risks. He had no proof about the vibration machines do any good but said its best to exercise myself. He did mention a website with information I may be interested in, NOF.ORG
I also went to a nurse practitioner yesterday that goes a more natural route when addressing health issues and she mentioned HRT bio identical pellets, BioTE, they would do bloodwork first to determine your hormone levels, mine were taken in November and are so low they are almost nonexistent, then they enter the numbers into the program and it calculates they amount of HRT you need, she starts low and increases if needed after a 6 week check of bloodwork. This unfortunately is not covered by insurance so I would have to pay out of pocket ($350 per session, these are placed underneath the skin in the hip/buttocks region, once every 3 months) she also mentioned that I need to get my vitamin D up to 10,000 ITU’S, (mayo doc said my d level looked fine) this will help the calcium go to the bone and vitamin K2 is also another to take, she does sell a vit D with K2 at her office, which I will try when I finish my current K2. She stated that using the BioTE does not have any bad side effects, but will help with bone, memory and others and if you decide to stop taking it, there will not be any issues other than your levels will go back to what they were before treatments. Also she stated that there are studies showing that it can raise your bone density level up but you may need to wait 2 years to see results. But as I was standing at the check out window, at the nurse practitioner office she looked at me and said “think about and pray about it before you make your decision”. That floored me because I have been praying about it and asking God to show me the best option.
Please let us know the follow up to your Mayo Clinic visit.
I went to the mayo clinic doctor today and was surprised that he understands that I am not a fan of medication. He told me what was out there for treatments, Forteo, Fosomax, reclast, etc but then I mentioned that my primary doctor suggested Prolia and he said he would not recommend that for me, he might if i was older (I am 62) but not bow. He mentioned weight bering exercise, yoga, tai chi etc. and when I asked about a weighted vest or ankle weights when walking he said that was a good idea. I asked about hormone replacement therapy and mentioned bio identical treatments but he didn’t comment on the bio identical but did say that HRT might be good but I would have to consider any risks. He had no proof about the vibration machines do any good but said its best to exercise myself. He did mention a website with information I may be interested in, NOF.ORG
I also went to a nurse practitioner yesterday that goes a more natural route when addressing health issues and she mentioned HRT bio identical pellets, BioTE, they would do bloodwork first to determine your hormone levels, mine were taken in November and are so low they are almost nonexistent, then they enter the numbers into the program and it calculates they amount of HRT you need, she starts low and increases if needed after a 6 week check of bloodwork. This unfortunately is not covered by insurance so I would have to pay out of pocket ($350 per session, these are placed underneath the skin in the hip/buttocks region, once every 3 months) she also mentioned that I need to get my vitamin D up to 10,000 ITU’S, (mayo doc said my d level looked fine) this will help the calcium go to the bone and vitamin K2 is also another to take, she does sell a vit D with K2 at her office, which I will try when I finish my current K2. She stated that using the BioTE does not have any bad side effects, but will help with bone, memory and others and if you decide to stop taking it, there will not be any issues other than your levels will go back to what they were before treatments. Also she stated that there are studies showing that it can raise your bone density level up but you may need to wait 2 years to see results. But as I was standing at the check out window, at the nurse practitioner office she looked at me and said “think about and pray about it before you make your decision”. That floored me because I have been praying about it and asking God to show me the best option.
I'm doing the same. Everything I read says taking the meds reduces the risk of a fracture by 33%; yet, the side effects and long term use of said meds also reduces the quality of the bones and makes it more difficult for the body to actually remove said fake bones and remake new strong bones. In essence, one makes brittle less strong bones that may increase fracture. Even if taking the meds, I have a 60+% of fracturing if I did nothing? Seems counterproductive.
I am 67 and just had a bone density test on a new machine. I have struggled with back issues since 30 and so was not surprised to have a -3.2 score. On the other hand my hips are totally normal, not even an osteopenia rating (I walk and do a lot of lunges, bridges and squats). I can't imagine taking a drug that stops the natural bone cycle, especially when my hips are fine. That said not happy about the spine number. I am so happy about all these sites and information so thanks to everyone who posts. I will be adding more K2 to my daily regimen and looking to see what spine strengthening exercises I might be able to do. I also follow a good diet, but need to work on stress which has been my struggle for a long time and also can contribute to low density. I would like to see better tests that measure bone web strength. Finally my mother had osteoporosis for a long time and I wish I had asked her what score she had. She also fell a lot due to some medications she was taking (not for bone) but never broke anything and she lived to 89. In some ways I wish I didn't even know since these machines are iffy in the reliability and consistency department, might be better for mental health.
You mentioned wanting to look into exercises to support your spine. This is a link to a study by a Mayo Clinic physician showing that back extensions reduce the risk of vertebral fractures.
ekroc.weebly.com/uploads/2/...
You may want to find a specialist physiotherapist to get you started, but not everyone can. There are many books and online resources available. If you haven't come across it, I think Margaret Martin's MelioGuide can be a good resource. She also has specific recommendations for the spine and back muscles.
It sounds like you already do a lot of positive things for yourself, well done. 
I relate to some of your comments, including frustration with testing and treatment options. There have been times I've wished I hadn't found out, but I decided to look at it as an opportunity to do what I can to look after my bones and well-being. You're so right about stress having a negative effect on bones. Margie Bissinger is a US physical therapist/health coach who has a website and podcast on bone health issues as well as mental outlook.
Evenity versus Forteo/Tymlos
Very nervous about taking Reclast
newly diagnosed and anxious
evenity patients, what's your age please? 
Anyone with alendronate side effects?
