New to osteoporosis and overwhelmed

Posted by zingsong @zingsong, Dec 28, 2023

Hello, I am new to this forum. I was diagnosed with osteoporosis 2 weeks ago. Lumbar spine T-score -2.9; Left Total Hip T-score -3.2; Left Femoral Neck T-score -3.3. I am 58, female, technically met the criteria for menopause just this year (August 2023), 5'6", 125 lbs. I exercise regularly (mostly hiking and walking, some Pilates Reformers, bands, exercises from PT to strengthen my knees and butt), eat healthy (Ca level 9.4, Vit D level 25), get plenty of sun. Mom is 83 and still in osteopenia. She had a compression fracture at 78 when putting a 55 lb suitcase onto a scale. One maternal aunt broke her hip at 60 when she was transferring a pot of stew. She had leukemia and died at 65. Additional risk factors include small (wrist) bones and Asian. All preliminary blood tests to rule out other causes came back neg (TSH, PTH, some autoimmune markers, etc.). When I requested a bone density scan my primary doc at first said I'm not 65 and I'd just reached menopause, but after I shared my family history concerns she approved. So the T-scores really came as a huge shock. Had my first appt with my primary doc last week. After 5 questions, she decided to refer me to an endocrinologist who is also a bone specialist. I will be seeing her in 10 days. I'm trying to educated myself on osteoporosis and there is so much (conflicting) information out there I feel really overwhelmed. I am so glad to have stumbled across this forum and find the discussions very interesting and informational. At this moment, I have hundreds of questions but I would like to start with a few.
1. How common is someone with my profile getting the kind of T-scores I got? My primary doc said "not uncommon". My OB/GYN said "it's pretty rare" based on her patient panel. During the holiday get-togethers I saw many female friends and relatives who are much older +/- have been in menopause much much longer +/- very sedentary and they are not at my level of osteoporosis. What are your observations in your life circles?
2. Is it reasonable to request a repeat of the Dexa Scan before I embark on a life long journey of drug therapy? Anyone with flawed Dexa Scan results?
3. I'm told my T-scores are bad, but I'm having a hard time understanding how bad and what that translates into in real life. The only thing I could find was T-scores less than -2.5 you have osteoporosis. My daughter just got married in July. Does that mean I shouldn't bend over and pick up my future grandkids once they reach 10 lbs? 20lbs? 30lbs? Should I not pick up a 20 lb watermelon from the pit at Costco? Should I switch out all my cast iron pots and pans? I get the sense that I need to be mindful of my activities from now on to prevent fractures but how careful is careful enough? Thank you for any input.

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

jozer | @jozer | Feb 6 9:08am

In reply to @gravity3 "@jozer I sometimes wonder if how the sequencing of drugs can be part of the issue..." + (show)

@gravity3 I also wonder. I have learned that perhaps I should have been on an anabolic first then reclast. Not what my doctor chose. Fosamax followed by reclast. He said no prolia as you are never off it. All docs have their way of treating, like having creative differences!

gently | @gently | Feb 6 9:38am

jozer, your post illustrates the need for the bone markers that many of our practitioners are refusing to order.
Bone markers reliable tell you within two months of using an osteoporosis medication whether it is effective for you.
The dollar expense, the side effects, and the time wasted with a year on an ineffective medication make the expense of the markers necessary for out health.

gravity3 | @gravity3 | Feb 6 9:55am

In reply to @jozer "@gravity3 I also wonder. I have learned that perhaps I should have been on an anabolic..." + (show)

@jozer

I appreciate your remarks. I would encourage everyone to do their own research and be prepared to ask our doctors about the rationale for the choices they are offering.
I wish I had known years ago about bisphosphonates and anabolics. Everyone including doctors are on a steep learning curve. And I think everyone is aware now that women's health and women's health research funding
has not been a priority.

mcchesney | @kathleen1314 | Feb 6 12:10pm

In reply to @jozer "Another interesting situation. I know the space program evaluates among other things bone health in people..." + (show)

@jozer
Rems provider search:
https://us.echolightmedical.com/find-a-provider/
TBS provider search:
https://www.medimaps.ai/find-centers-with-tbs/
This is how I located a facility for my TBS; REMS was just too far away for me, but I would prefer the REMS.

jozer | @jozer | Feb 7 8:18am

Thank you for all your insights; and I DID find a couple of radiology facilities that have TBS (why doesn't my doc send me to one of those?) thanks to Mcchesney for the intel! I will be going there early summer as that is when all my testing happens. I never had bone marker testing until I dug around and found out about CTX, PN1P, etc. Had to ask doc about it; he ordered CTX and NTX after I was on Fosamax for 8 months. Sorry in advance to the men dealing with osteoporosis on this site, but like (in my opinion) any disease that is considered a "women's disease" there is just not enough good treatment out there. Acceptable, some great but all come with possible awful side effects. Gyne (female) has complained to me about that lack of research, coverage of meds, etc. for womens health. Sigh.

redletterday | @sfe431 | Feb 14 2:18pm

My T scores are similar to yours-hips -3.2, spine -2.7. I am 68, weight 122 pounds. Active, flexible , never had a break. I am dismayed when I hear of others much older who have better t-scores than mine since I have considered myself to be a "young grandma." I saw an endocrinologist who after quickly reviewing all the scans and labs ( I have Hashimotos disease and have been on Synthroid for many years) told me that my thyroid/meds had nothing to do with the osteoporosis. That was contrary to everything I have ever read. He gave me a choice of 3 meds without even looking at me and that was that. I am doing the calcium ( mostly from food) and Calcium Glyconate, Vit K2- MK7, 50 mcg, Vit D 1000iu and Magnesium glycate. I go to the gym, walk, do hand weights and am going to purchase a weighted vest for hiking. My older sisters are not doing the medication route and are 80 and 86; one having bad luck on Fosamax so stopped it. My only cookware is cast iron and I don't plan on switching it out ! I will however think twice and check my posture before I swoop down and pick up a grandkid ! I speak to every woman I see at the gym to learn from them. Strength is in numbers ! Good luck ! I wish you the best , whatever route you decide !

mcchesney | @kathleen1314 | Feb 14 3:19pm

In reply to @sfe431 "My T scores are similar to yours-hips -3.2, spine -2.7. I am 68, weight 122 pounds...." + (show)

@sfe431
The concern with thyroid meds is more on the end of too much T4 or too low of a tsh.
Years ago this was a problem because of how doctor's prescribed. It is less of a problem nowdays.

I am assuming that your doctor looked at your levels and made the diagnois that your thyroid meds were not driving your osteoporosis. He is the expert on that problem and will know your medical history best. It really would not take him long to evalute that so don't be concerned that he seemed too quick.

A lack of Sex Hormones from menopause are the main drivers of osteoporosis. This is due mainly to a lack of estrogen. The lack of estrogen during menopause causes osteoporosis primarily by accelerating the rate of bone resorption (breakdown, osteoclasts) while decreasing new bone formation, osteoblasts, leading to an imbalance in bone remodeling. Estrogen normally limits the activity of osteoclasts (cells that break down bone) and supports osteoblasts (cells that build bone); the absence of especially estrogen leads to rapid bone density loss.

It would help to see a bone quality number from TBS or REMS, but with the number which you have now of hips -3.2 it would be appropriate to consider some type of medication. Plus, I am sure that your doctor looked at your bone density numbers of which your Tscores are reflective.

It takes longer to change the hip area for the better so the sooner you begin the better chance of a good outcome.

Even if you just begin BHRT/HRT plus strontium citrate that will have more impact than your current, food and exercise plan. Neither good nutrients or a good exercise plan can change your lack of hormones.
Bone health is a synergistic action. It takes more than good nutrition and good exercise; you also need something to drive the nutrients into the bone or you need to overly stimulate osteoblasts or tap down on osteoclasts. Hormones did that for you for years, but now you are lacking that hormonal engine.

Many women on here are choosing to use BHRT/HRT as a companion treatment to whatever medicine or strontium which they choose. That way they are stimulating the osteoblasts with hormones. Still, this will depend on what type medicine or intervention which you choose and your doctor needs to be alerted.

Meds frequently try to push the body to grow more bone, osteoblasts or stop the body from remaking bone, osteoclasts.

Strontium & Evenity act more directly as dual-action agents, reducing resorption while increasing formation simultaneously. Strontium is unique in that it is both a supplement and yet used at a medical level for osteoporosis.

You have several options. The only thing that you can do wrong is to do nothing. There is absolutely no reason that you should not have a good outcome.