1. < Osteoporosis & Bone Health

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.

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sallyj2 | @sallyj2 | Dec 29, 2023
In reply to @zingsong "Thank you so much Windyshores for your reassuring comments. Yes, tested my PTH and it is..." + (show)
@zingsong

Thank you so much Windyshores for your reassuring comments. Yes, tested my PTH and it is normal. My OB/Gyn doc said no point in checking estrogen levels b/c we already know they will be low since I am (finally) in menopause. Re: HRT, she said if someone is already on it for post-menopausal reasons, then they will keep the patient on it. But they would never initiate HRT to another osteoporosis drug for dual therapy. That doesn't really make sense to me as the mechanisms should be additive instead of opposing. But I will bring that question to my Endo appt. I will look into all the resources you've listed. Thanks!

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My numbers are where yours are after a 20% improvement last year adding magnesium, lots of pt, etc. Then, I lifted my 60 pound dog in a dead lift from the ground. Three attempts, I fractured. I am now on hormones and still considering tymlos strongly. My endocrinologist first said no in the hormones concurrently, but finally agreed that I needed them for other things. I am tapering up estrogen, testosterone, and progesterone. So, yes, you can break at those levels and need to be careful. I was told never to bend forward or to twist, or to lift greater than 20 pounds. Not unreasonable to have another dexa, but then try to stick with same machine for future dexa scans. Good luck! Super hard decisions! I told my dr. If bone drugs give me side effects sufficient that I can’t exercise, that I’m done. There is no point. Read the absolute risk reductions and dexa improvements. Relative risk is just that, relative, and can be pretty meaningless.

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Nanny23 | @nanny23 | Dec 30, 2023
In reply to @zingsong "Thank you so much Windyshores for your reassuring comments. Yes, tested my PTH and it is..." + (show)
@zingsong

Thank you so much Windyshores for your reassuring comments. Yes, tested my PTH and it is normal. My OB/Gyn doc said no point in checking estrogen levels b/c we already know they will be low since I am (finally) in menopause. Re: HRT, she said if someone is already on it for post-menopausal reasons, then they will keep the patient on it. But they would never initiate HRT to another osteoporosis drug for dual therapy. That doesn't really make sense to me as the mechanisms should be additive instead of opposing. But I will bring that question to my Endo appt. I will look into all the resources you've listed. Thanks!

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Be very careful with HRT. Especially if breast cancer runs in your family. Or ovarian or uterine cancer. It feeds the cancer if it is estrogen positive. Which mine was.

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1 reply
tetris | @tetris | Dec 31, 2023

@zingsong:
1. @windyshores's info is spot on. I second re: getting "Great Bones" through Amazon or your library. It was published this year. @gravity3's recommendation re: OsteoBoston YouTube channel is great too!
2. Yes, errors can happen with DXA scans. "Great Bones" discusses them in detail, as does Lani Simpson's older "Dr. Lani's No-Nonsense Bone Health Guide".
3. That's great you've had several tests to try to root out the underlying cause of your osteoporosis. That's so important. "Great Bones" discusses that in detail too.
4. I empathize with your deer-in-headlights feeling. You are doing great things right now to help ease that feeling, e.g., data and info collection and research, finding this forum, advocating for yourself. It sounds like you have a good PCP too.
5. You do not need to make any immediate decisions re: medications. If your endocrinologist recommends any, please ask them when you must make a decision. (In my case, my PCP said 3-6 months.) Continue your information gathering to become more informed about the endocrinologist's recommendations, including cost, insurance coverage, and financial assistance.
Best wishes, and remember: you got this!

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pedsnurse61 | @pedsnurse61 | Dec 31, 2023

First of all welcome to these blogs. You are taking the first step in your journey with Osteoporosis and educating yourself. I feel that Education and support will help guide you during this initial time. Many on this site ( including me) highly recommend the Book " Great Bones". It truly is an excellent resource for you. I know you are scared and worried, this is a normal reaction. When I was diagnosed at age 50 ( 12 years ago) I wish I had this site for any questions/concerns I had. We really do support each other and share our journeys. Some of us have had great improvements with medication and some haven't. Take your time and research medications, supplements, exercise programs. Everyone is unique and what works for one person may not work for another. When you see the Endocrinologist I am sure he is going to order more lab work so be prepared. Before you go for your appointment you might want to read the chapter on specific bone-turnover lab tests and ask the MD to order them. Some MD's will order them, some think it is a waste of time.
Please keep us posted.
Lisa

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sallyj2 | @sallyj2 | Dec 31, 2023
In reply to @nanny23 "Be very careful with HRT. Especially if breast cancer runs in your family. Or ovarian or..." + (show)
@nanny23

Be very careful with HRT. Especially if breast cancer runs in your family. Or ovarian or uterine cancer. It feeds the cancer if it is estrogen positive. Which mine was.

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As with all meds, you have to be careful. My oncologist approved transdermal hrt despite previous cancers and risk factors. And, I have several friends who have had breast cancer who continue to take hrt. Everyone is unique.

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2 replies
windyshores | @windyshores | Dec 31, 2023
In reply to @sallyj2 "As with all meds, you have to be careful. My oncologist approved transdermal hrt despite previous..." + (show)
@sallyj2

As with all meds, you have to be careful. My oncologist approved transdermal hrt despite previous cancers and risk factors. And, I have several friends who have had breast cancer who continue to take hrt. Everyone is unique.

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@salyj22 some breast cancers are hormone driven (I think something like 80%) and some are not. If you have had hormone driven cancer, HRT is a terrible idea. If your cancer is hormone-negative, I don't really know and would ask my doc and research whether metastasis could switch it to hormone positive.

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1 reply
sallyj2 | @sallyj2 | Dec 31, 2023
In reply to @windyshores "@salyj22 some breast cancers are hormone driven (I think something like 80%) and some are not...." + (show)
@windyshores

@salyj22 some breast cancers are hormone driven (I think something like 80%) and some are not. If you have had hormone driven cancer, HRT is a terrible idea. If your cancer is hormone-negative, I don't really know and would ask my doc and research whether metastasis could switch it to hormone positive.

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Yes, everyone is unique. I was told hrt can actually be preventative for some things- bones, cardio, and even some cancers. It totally depends upon the person and what is being treated.

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2 replies
sallyj2 | @sallyj2 | Dec 31, 2023
In reply to @sallyj2 "Yes, everyone is unique. I was told hrt can actually be preventative for some things- bones,..." + (show)
@sallyj2

Yes, everyone is unique. I was told hrt can actually be preventative for some things- bones, cardio, and even some cancers. It totally depends upon the person and what is being treated.

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Also, treatment for migraines and hyoerlipidemia in some women.

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1 reply
windyshores | @windyshores | Dec 31, 2023
In reply to @sallyj2 "Also, treatment for migraines and hyoerlipidemia in some women." + (show)
@sallyj2

Also, treatment for migraines and hyoerlipidemia in some women.

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@sallyj2 I respectfully disagree with this. "And, I have several friends who have had breast cancer who continue to take hrt. Everyone is unique." 80% of cancer survivors are not "unique." Anyone who has had breast cancer needs to get expert advice from an oncologist and most women who have had breast cancer absolutely cannot do HRT.

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1 reply
sallyj2 | @sallyj2 | Dec 31, 2023
In reply to @windyshores "@sallyj2 I respectfully disagree with this. "And, I have several friends who have had breast cancer..." + (show)
@windyshores

@sallyj2 I respectfully disagree with this. "And, I have several friends who have had breast cancer who continue to take hrt. Everyone is unique." 80% of cancer survivors are not "unique." Anyone who has had breast cancer needs to get expert advice from an oncologist and most women who have had breast cancer absolutely cannot do HRT.

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I certainly agree with seeking expert advice. As I mentioned, I have done so, oncologist, breast surgeon, cardiologist, endocrinologist, Obgyn, functional, ophthalmologist, and internal medicine doctors, and as I said, everyone is unique. Hormones are not evil just need caution as does every med.

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