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.

@teb

@lynn59, it looks like you are working your diet very consciously!

I've been calculating my nutrition for several years now so at this point, I kind of have a feel for whether or not I've achieved my nutritional daily goals. I still like to calculate it sometimes to check in (hey, it's fun!) but I just don't need to as much as in the past. I use the website cronometer.com. It's really terrific as it has the nutritional content of whole foods as well as many of the packaged foods you might buy. In addition, if you have a particular daily meal or recipe that you repeat regularly, you can create a "recipe" for that and it will calculate your nutrition for that meal or recipe. Then you just have to click on that recipe item to add all of the ingredient components at one time. Your daily diary is retained long term so you can track your changes and see your progress if you care to.

I don't consume dairy (or gluten) due to autoimmune issues so it's a little more challenging getting my calcium requirements. I start every day with a heaping serving of sauteed collard greens along with 2 eggs, homemade nut and seed crackers, sauerkraut and some avocado. The collards alone give me a full serving of calcium and along with the crackers, etc, I get almost 400 mg. The rest of the day, I eat lots of dark leafy greens, broccoli or broccolini, canned salmon with bones or sardines (when I can stomach them), almonds, figs, oranges, carrots, etc. I take a spoonful of Eden black sesame paste like a supplement when I need to. Two tablespoons has 35% of your daily dietary calcium need (along with protein, iron and good fats). I often add a Tblsp of blackstrap molasses to a cocoa drink concoction I make. One Tblsp has about 145 mg of calcium along with iron. I drink nettles and peppermint teas daily which are also calcium and mineral rich. If I do need a calcium supplement, I try to take it in smaller doses throughout the day.

One area you might consider is replacing your skim milk with whole milk or better yet, yogurt, kefir or a well-aged gouda (has one of the highest amounts of vitamin k in cheese). There is mounting evidence that whole fat dairy offers benefits over skim, fermented full fat dairy being the best (but who knows, nutrition "evidence" is constantly evolving!).

A study published in the British Medical Journal determined that "Higher intake of whole fat (but not low fat) dairy was associated with a lower prevalence of Metabolic Syndrome and most of its component factors, and with a lower incidence of hypertension and diabetes."
Quite compelling!
https://drc.bmj.com/content/8/1/e000826

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@teb Do you know what your daily protein consumption is? This is a hard area for me. I count on dairy to fulfill a lot of that.

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@cpd54

@teb Do you know what your daily protein consumption is? This is a hard area for me. I count on dairy to fulfill a lot of that.

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it's usually between 60 and 90 grams. I strive for the latter.

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@teb

@lynn59, it looks like you are working your diet very consciously!

I've been calculating my nutrition for several years now so at this point, I kind of have a feel for whether or not I've achieved my nutritional daily goals. I still like to calculate it sometimes to check in (hey, it's fun!) but I just don't need to as much as in the past. I use the website cronometer.com. It's really terrific as it has the nutritional content of whole foods as well as many of the packaged foods you might buy. In addition, if you have a particular daily meal or recipe that you repeat regularly, you can create a "recipe" for that and it will calculate your nutrition for that meal or recipe. Then you just have to click on that recipe item to add all of the ingredient components at one time. Your daily diary is retained long term so you can track your changes and see your progress if you care to.

I don't consume dairy (or gluten) due to autoimmune issues so it's a little more challenging getting my calcium requirements. I start every day with a heaping serving of sauteed collard greens along with 2 eggs, homemade nut and seed crackers, sauerkraut and some avocado. The collards alone give me a full serving of calcium and along with the crackers, etc, I get almost 400 mg. The rest of the day, I eat lots of dark leafy greens, broccoli or broccolini, canned salmon with bones or sardines (when I can stomach them), almonds, figs, oranges, carrots, etc. I take a spoonful of Eden black sesame paste like a supplement when I need to. Two tablespoons has 35% of your daily dietary calcium need (along with protein, iron and good fats). I often add a Tblsp of blackstrap molasses to a cocoa drink concoction I make. One Tblsp has about 145 mg of calcium along with iron. I drink nettles and peppermint teas daily which are also calcium and mineral rich. If I do need a calcium supplement, I try to take it in smaller doses throughout the day.

One area you might consider is replacing your skim milk with whole milk or better yet, yogurt, kefir or a well-aged gouda (has one of the highest amounts of vitamin k in cheese). There is mounting evidence that whole fat dairy offers benefits over skim, fermented full fat dairy being the best (but who knows, nutrition "evidence" is constantly evolving!).

A study published in the British Medical Journal determined that "Higher intake of whole fat (but not low fat) dairy was associated with a lower prevalence of Metabolic Syndrome and most of its component factors, and with a lower incidence of hypertension and diabetes."
Quite compelling!
https://drc.bmj.com/content/8/1/e000826

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What a wealth of information you have shared with us. Thank you so very much.

Unfortunately, I find the calculations that you consider 'fun' to be a real pain....and I have the same response to calculating supplements.

Buy you gotta do what you gotta do.....

I read the same recent info about whole fat dairy and am intrigued. Sincerely hope it is true....although I have learned through the years to prefer olive oil to butter and to consume ice cream only in my dreams, there are some full fat important products (like yogurt) that are simply more satisfying.

Your approach is such an inspiration.

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You may want to include discussion of hormone replacement therapy with both your ob/gym and endocrinologist.
Kefir is a great whole milk fermented food and is very easy to make.

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@rjd

What a wealth of information you have shared with us. Thank you so very much.

Unfortunately, I find the calculations that you consider 'fun' to be a real pain....and I have the same response to calculating supplements.

Buy you gotta do what you gotta do.....

I read the same recent info about whole fat dairy and am intrigued. Sincerely hope it is true....although I have learned through the years to prefer olive oil to butter and to consume ice cream only in my dreams, there are some full fat important products (like yogurt) that are simply more satisfying.

Your approach is such an inspiration.

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thank you so much! so nice of you to say. 🙂

Yeah, I'm a bit of a weirdo that way. Nutrition really excites me and finding new ways to continually improve my diet gives me great satisfaction. You might try cronometer and perhaps you too will get excited when those circles complete, indicating you've met your goals :).
(or maybe not. i understand)

Agree with your preference for olive oil. I use it generously along with some ghee which provides great flavor, vitamins A, E and K, but without the milk solids of butter. If you have a craving for ice cream but want a dairy alternative, you might try Cado which has avocado as it's main ingredient. The chocolate flavor is delicious. The other option is O'My which is coconut cream based but overall, pretty clean ingredients. A little bit of either of those options is a satisfying, once-in-awhile treat.

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@teb

thank you so much! so nice of you to say. 🙂

Yeah, I'm a bit of a weirdo that way. Nutrition really excites me and finding new ways to continually improve my diet gives me great satisfaction. You might try cronometer and perhaps you too will get excited when those circles complete, indicating you've met your goals :).
(or maybe not. i understand)

Agree with your preference for olive oil. I use it generously along with some ghee which provides great flavor, vitamins A, E and K, but without the milk solids of butter. If you have a craving for ice cream but want a dairy alternative, you might try Cado which has avocado as it's main ingredient. The chocolate flavor is delicious. The other option is O'My which is coconut cream based but overall, pretty clean ingredients. A little bit of either of those options is a satisfying, once-in-awhile treat.

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Thanx for your encouragement. Like nutrition excites you, I am into tennis.

Much prefer spending time working on my serve and net game as I try to figure out how a 74 year old can remain competitive. Nutrition seems more like a chore in comparison but I appreciate and will consider your suggestions.

Fortunately I enjoy cooking. Do not know how people can meet nutritional needs while eating out as much as it seems most people do nowadays.

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I was diagnosed with osteoporosis at 53 in 2002. I took the recommended prescription at that time, Actonel. There was little improvement. My Dr switched me to Boniva. Further tiny improvement. I was also taking Citrical & vit D. My research made me hesitant to take Fosomax because of possible side effects. In 2019 my research led me to AlgaeCal, a plant based calcium formula which included vit D, K, magnesium, strontium. (A less expensive brand of the same formula is available on Amazon.) Plant based calcium is better absorbed & utilized by the body. AlgaeCal has a helpful community on Facebook. I've now been taking that for 5 years and no other prescriptions. I also have been doing Bone Builders exercises for 9 years. I've had significant improvements in my 2021 & 2023 dexa scans! Now at 75 my spine & left hip are almost into the "normal" range! It seems doctors will always prescribe drug$ before considering a natural approach. I know this may not be the answer for everyone but I'm so glad I tried it.

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My Sympathy but congratulations for insisting on getting tested. You know that 90% of success is just SHOWING UP and you got that part under control. NOW WHAT TO DO??

While you decide on treatment try Bone Maximizer supplement that my friend swears by. It can't hurt and will give the old skeleton something to chew on right away. https://smile.amazon.com/MRM-Nutrition-Maximizer-antibiotic-Gluten-Free/dp/B07DRTRVCZ?content-id=amzn1.sym.deffa092-2e99-4e9f-b814-0d71c40b24af&psc=1&ref_=pd_bap_d_grid_rp_0_1_t

I had a shock when I got the osteoporosis diagnoses too and tried a bunch of treatments. All had side effects I could not tolerate. THEN I GOT TYMLOS and it is working. Users step up the dose by clicking the self administer pen. Recommended dose is 8 clicks. I started at 1 and am up to 7 and feeling fine. I get another bone scan in a couple of months and will share results.

MEANWHILE, DO NOT PICK UP YOUR GRANDCHILD AFTER 20 POUNDS. Lifting and carrying are the most dangerous moves I find. SO STAY SAFE and KEEP THE FAITH. You got to the doc in time and you'll be fine! PatJoh

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@mspatart

My Sympathy but congratulations for insisting on getting tested. You know that 90% of success is just SHOWING UP and you got that part under control. NOW WHAT TO DO??

While you decide on treatment try Bone Maximizer supplement that my friend swears by. It can't hurt and will give the old skeleton something to chew on right away. https://smile.amazon.com/MRM-Nutrition-Maximizer-antibiotic-Gluten-Free/dp/B07DRTRVCZ?content-id=amzn1.sym.deffa092-2e99-4e9f-b814-0d71c40b24af&psc=1&ref_=pd_bap_d_grid_rp_0_1_t

I had a shock when I got the osteoporosis diagnoses too and tried a bunch of treatments. All had side effects I could not tolerate. THEN I GOT TYMLOS and it is working. Users step up the dose by clicking the self administer pen. Recommended dose is 8 clicks. I started at 1 and am up to 7 and feeling fine. I get another bone scan in a couple of months and will share results.

MEANWHILE, DO NOT PICK UP YOUR GRANDCHILD AFTER 20 POUNDS. Lifting and carrying are the most dangerous moves I find. SO STAY SAFE and KEEP THE FAITH. You got to the doc in time and you'll be fine! PatJoh

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Bone density results, what they mean:
-1.0 or above = Your bone density is considered normal

Between -1 and -2.5 = Your score is a sign of osteopenia, a condition in which bone density is below normal and may lead to osteoporosis

-2.5 or below = Your bone density indicates you have osteoporosis

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@mspatart

Bone density results, what they mean:
-1.0 or above = Your bone density is considered normal

Between -1 and -2.5 = Your score is a sign of osteopenia, a condition in which bone density is below normal and may lead to osteoporosis

-2.5 or below = Your bone density indicates you have osteoporosis

Jump to this post

Dexa Scans:
The best way to measure your bone density progress is to track the percentage change in your BMD from your previous DEXA scan. Your T-score is a useful indicator of how your bones compare to someone with peak bone density.

But unfortunately, there isn’t a standard scoring system for T-score values, so they vary from one clinic to the next. What’s more, T-score percentages can be a little broad, so your T-score may not change, even though your bone density increased!

So the percentage change in your BMD is the best indicator of your progress. Remember, BMD stands for bone mineral density— a measure of the mineral content in a certain volume of your bone. So if you see an increase in your BMD, your bones are getting denser and stronger. A BMD decrease means your bones are becoming more porous and weak.

Because different clinics use slightly different equipment and scoring methods, it’s best to have all your DEXA scans at the same clinic. This way, you’ll be able to track your progress accurately.

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