Sharing my Dexa results :)

Posted by teb @teb, Mar 8 1:19pm

Just wanted to update my dexa results as several people were interested in knowing the outcome of my journey. Here's a recap of my history and the results:

*Diagnosed at 57 with a T-score of -2.8
*Refused meds, determined to increase density naturally. Two years of a 100% dedicated effort through exercise (hiking, dancing, weights), diet (tracking nutrition to hit all markers and 8 prunes a day!) led to an epic fail with lost density to a T-score of -3.2
*Accepted that I needed to go on meds. Chose Forteo as the most "natural" approach since it is parathyroid hormone and targets the spine which is where I had my loss. T-score after 1 year, -2.8. T-score at 2 years, -2.9! (get your bone markers everyone! my doctor obviously did not order and I was not as informed back then)
*Had to make a decision on a follow up med to maintain the Forteo gains. I ultimately chose HRT, again as my most "natural" option. I was 62 at the time and this was not an option that doctors approved of. Luckily, my endocrinologist was well versed in treating Transgender people and was knowledgeable about hormones. He first wanted to put me on Prolia but I argued that with multiple autoimmune conditions, I did not think it was a good idea to mess with my immune system. He had never thought about that but agreed wholeheartedly and also agreed that HRT would be a good option for me. I started at a dose of .025 transdermal estradiol and 100 mg micronized progesterone.
*I am soon to be 69. T-scores remained somewhat stable for the past 6-7 years
*My most recent dexa showed the following changes. This is a new dexa scanner for me so there might be some deviation but with all of my recent moves, I've probably had 4-6 different scanners.

L1-L4 2023 -2.9 to 2025 -2.5
Left Hip -.8 to -.7
Total Femoral Neck 2023 -2.0, 2025 -1.8
Left FM 2025 -1.8 (no left score in 2023, 2018 -2.1)
Right Femoral Neck 2025 -2.2 (no right score in 2023, 2018 was-2.3)
Right Hip 2025 -1.2 (no right hip in 2023, 2018 was -1.5)
I must check back in my test results as I know the right hip was done, I just don't have in my current notes. Anyway, you can see the trend. Hope it isn't too confusing!

I'm elated at these results. There may be some standard deviation due to different calibrations of different machines but then...which one is right? I'll take this one! In addition, some of this increase could be due to arthritic changes but there is no way to tell definitively.

Here's what I did in addition to HRT:
3 cardio dance classes weekly
1 Tap class a week (great stomping!)
4 mile hike on hills/wk
Daily walking of 3 miles when not in class or hiking
Core and stretch 20 minutes a day
Weight training 2-3 x week (higher weights than I've ever lifted in my life)
Diet - all whole foods, nuts, seeds, eggs, fish, meat, tons of veggies, fruit, gluten and dairy free. I munch on chicken bones when I eat chicken and have canned salmon with bones. I incorporate ground eggshells into my nut and seed crackers which I consume daily.
Tracking nutrition on Cronometer - I input my daily diet to see how my nutrition stacks up and supplement where I fall short. I maybe supplement with 300 mg calcium a day, sometimes up to 500 mg in divided doses but only when necessary. I supplement with Vitamin D daily and my level is 72.
No more daily prunes, only when I feel like it!

My diet has always been very healthy, organic, whole foods and I've tracked my nutrition for many years. The eggshell calcium is new. I would say the major change is more veggies but I attribute most of the positive change is due to weight training. I recently increased my HRT dose (too recent to have impacted these results) because in more recent years, individual vertebrae were starting to diminish even though my total score remained the same at 2-9 which my doctor could not explain. I'm not sure that increase in HRT dose was actually necessary and may consider lowering the dose.

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

Hi, teb, Do you mind if I ask what your individual lumbar scores were before and after two years on Forteo.
Thanks for the update on scores and for the diet and exercise revelations. I'll be watching for your increased HRT results with interest.

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@gently

Hi, teb, Do you mind if I ask what your individual lumbar scores were before and after two years on Forteo.
Thanks for the update on scores and for the diet and exercise revelations. I'll be watching for your increased HRT results with interest.

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@gently, I'll have to find my old reports. Some years, they did not provide the individual lumbar scores. I didn't get them this year either and I've asked my doctor if they can be provided. I'm so surprised (and perturbed) that each dexa scan is so different. I specifically went to this Hoag provider because they were the only one that I could find that scanned both hips and my hips are each very different so important info. I missed getting a TBS score by only a few weeks as they will be providing that very shortly. Wish I had know beforehand as I'm not sure it can be provided retroactively but I have asked since it's from the same equipment, they just haven't figured out the TBS program yet.

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teb, don't struggle back through records for those lumbar numbers. I wondered because often there is a slight loss of bone mineral density with both Tymlos and Forteo. I suspect the loss occurs with canalization, a function of the osteocytes which doesn't reflect a loss of strength, but a loss of mineral density.
But you are doing well in maintaining the density gained. I feel encourage to try heavier weights.
Orange County, then. Good endocrinologist?

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@gently

teb, don't struggle back through records for those lumbar numbers. I wondered because often there is a slight loss of bone mineral density with both Tymlos and Forteo. I suspect the loss occurs with canalization, a function of the osteocytes which doesn't reflect a loss of strength, but a loss of mineral density.
But you are doing well in maintaining the density gained. I feel encourage to try heavier weights.
Orange County, then. Good endocrinologist?

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Are you in Orange County? I don't have a good endocrinologist here. Looking for someone who has an integrative approach but have not been able to find.

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Hi @teb. Thank you for this update. Very comprehensive and helpful. Can you explain what you meant by: "get your bone markers everyone! my doctor obviously did not order and I was not as informed back then)".
What are bone markers? Thank you

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@deborahla

Hi @teb. Thank you for this update. Very comprehensive and helpful. Can you explain what you meant by: "get your bone markers everyone! my doctor obviously did not order and I was not as informed back then)".
What are bone markers? Thank you

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@deborahla, bone markers, meaning particular lab work. Good to have P1NP and CTX in particular which are markers of bone building and bone resorption respectively. They are especially important as you begin taking an anabolic osteoporosis drug to see if the drug is working. Good to get a baseline and then every several months to compare. Had my prior doctor ordered them during my second year of Forteo, I would have suspended taking the medication as it was no longer working and I subsequently lost a small amount the second year. Good to also have a Bone Specific Alkaline Phosphatase as well, another marker of bone formation.

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Thank you for this helpful information. I will talk to my doctor (appt. in April). I have started Evenity (2 doses so far). Deborah

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@deborahla

Thank you for this helpful information. I will talk to my doctor (appt. in April). I have started Evenity (2 doses so far). Deborah

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What has your experience been so far with Evenity?

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I have had 2 injections so far. No side effects. Maybe mild soreness at injection site (arm) for 1 day at most but nothing extreme. So far so good. I was very fearful when I started. But I decided I needed to do something -3.6 T score. I plan to do the 12 and go from there (thinking Reclast now, that may change). I don't want Prolia. (I am 71, long term osteoporosis since menopause). No prior treatment except fosamax 1 year. + fam hx mother and Mat. GM. No cardiac hx.

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@teb

@gently, I'll have to find my old reports. Some years, they did not provide the individual lumbar scores. I didn't get them this year either and I've asked my doctor if they can be provided. I'm so surprised (and perturbed) that each dexa scan is so different. I specifically went to this Hoag provider because they were the only one that I could find that scanned both hips and my hips are each very different so important info. I missed getting a TBS score by only a few weeks as they will be providing that very shortly. Wish I had know beforehand as I'm not sure it can be provided retroactively but I have asked since it's from the same equipment, they just haven't figured out the TBS program yet.

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My understanding is the TBS score is calculated by an add-on bit of computer software for the machine. But no idea if it can be calculated retroactively. Found this on the web:
"A TBS (Trabecular Bone Score) is added to a DEXA scan by using specialized software that analyzes the texture of the bone image taken during the DEXA scan, providing an additional measure of bone quality beyond just bone density, without requiring any extra radiation or scanning time; essentially, the software calculates a score based on the pixel variations in the image, with a higher TBS indicating better bone microarchitecture and a lower TBS indicating poorer bone quality, all while using the same DEXA scan data." I would sure ask the provider and go in person to ask for all the images and information in a printout. I think they have to give this info to you by law, but could be wrong. Never hurts to ask politely.

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