Mild osteoporosis DEXA scores: what would you do?

Posted by prettyflower @prettyflower, Jan 8, 2024

I posted this question earlier, which was about mild vs. severe DEXA scores. Replies seemed to veer off pretty quickly, lol, so I'm starting again. My last DEXA in May 2023 was a -2.7 spine, and during a surprisingly quick appointment a new doctor (an endo) said to go with Prolia. Background: I had been on Fosamax for over 4 years based on a -2.5 score. I had an initial slight improvement then it dropped to the -2.7. After reading quite a bit on this forum and elsewhere, I don't think my scores warrant Prolia. In fact, I've decided not to go on any medication until May of this year, when I will pursue another DEXA on a TBS-equipped machine. I will consider it my new baseline. My last two DEXAS were on different machines. What are your thoughts about scores, and when it becomes really necessary to treat with meds? Would anyone else here approach it as I am, by waiting a year for another DEXA with TBS?

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Profile picture for prettyflower @prettyflower

Same here with the hypothyroidism (Hashimoto's). My first addressing of osteoporosis (-2.5) was by my primary care doctor, and the Rx was for Fosamax. I wouldn't expect her to know about the bone markers, but I imagine she should/could have known about the relationship between low thyroid and bisphosphonates treatment. What bothers me is that the endocrinologist she referred me to later should have been aware of BOTH of these things instead of zeroing straight in on Prolia and citing insurance as the probable reason for that path. I hesitate to go back to her at all, but on the other hand I feel I haven't given her the full opportunity to bring things around. I was not as knowledgeable then as I am now. As far as the DEXA, I have new insurance now and am told they will cover it in my age group (over 50) in full as long as the doctor supports it. Good direction on the DEXA comparison, thanks!

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Can you explain what you mean by "the relationship between low thyroid and bisphosphonates treatment"? I have thyroid issues and osteoporosis and my endo is recommending Reclast.

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I am leary of Prolia even though doctors suggest taking it.

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I was told to discontinue post menopause hormone therapy( after hysterectomy) because of maternal family history of heart attacks

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Profile picture for teb @teb

I agree with @ans that good integrative docs are hard to find and very expensive. Even the ones that are not great will charge you around $650 for the first appt. I've had many integrative docs over the years and most have had a similar approach. They put you through a battery of expensive blood, stool, mold, food sensitivity, heavy metal and toxin tests. I think some of these tests are valid but I'm not sure we all need all of them so if you do pursue this route, start small and targeted with your testing. The validity of food sensitivity tests have been called into question. A better and cheaper approach is to do an elimination diet of a single food of category like gluten or dairy for 4 days to a week and see how you feel. Then reintroduce for a couple of days and see how you feel. Almost all integrative docs will tell you to eliminate gluten if you have any type of inflammatory issue. Secondarily, they will advise you to eliminate dairy. In my case, after doing much research on my own, I eliminated those two things in my diet and my alopecia went into remission. So, it is helpful to figure out if any foods are causing malabsorption issues or inflammation.

Most integrative docs are not experts in osteoporosis so I think you're best bet is an appt with Dr McCormick. The fact that your bone density was stable after meds and then dropped might be a good thing to explore with him. He is knowledgeable enough to have a perspective on what tests to do to potentially determine a root cause, and recommend which medication might be best for you and at what point in time. And he's half the cost of an integrative doc.

My most recent appt with an integrative doc was with Felice Gersh who is an MD specializing in menopause, with extensive experience prescribing hormones. Since I've been on HRT for 5 years, I thought it would be a good idea to speak with someone knowledgeable to discuss dose and long term use. She charged $650 for the initial appt and $350 for the second appt (1/2 hour). I felt those two appts provided a valuable perspective and I agreed that a dose adjustment might be helpful. Of course, she tried to hook me in to becoming a regular patient with ongoing follow up as many of them do but I didn't feel it was necessary other than a check-in every few years perhaps. And commonly, she tried to sell me lots of supplements so I had to exercise discretion.

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I have dealt with food sensitivities for more than 40 years. There are legitimate tests for lactose intolerance and celiac disease, but your best bet on anything else is an elimination diet. Just because you have inflammation does not mean you have to stop eating gluten. I would read what Dr. Andrew Weil has to say. Some of the tests you mention are not credible.

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Profile picture for prettyflower @prettyflower

@busyyaya Yes, I have recently learned that myself, and I did originally intend to go back to the previous machine. But when I found out my hospital system has a TBS-equipped DEXA machine in another location, I thought that would be a good new start. No idea whether my insurance carrier will cover it after only a year, but I will be finding that out. Thank you so much for replying!

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@prettyflower, I just had the exact same experience for the exact same reason. The problem is that my first scan (no TBS) was on a GE Lunar machine and the recent scan was on a Hologic machine. I'm glad I got the TBS, but my understanding is that I can't begin to compare the scores b/c of the different machine types. I don't understand it - aren't the bone density numbers the bone density numbers?? If I'd had the Hologic scan first, I'd feel pretty darn good about the scores.

I called the GE Lunar facility and I can pay out of pocket for another scan to go apples to apples. The out of pocket cost, including the radiologist interpretation, is $386.

I'm curious - would you do? All comments welcome.

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Profile picture for gently @gently

prettyflower,
some describe severe osteoporosis as established osteoporosis. So, you've had osteopenia and now your T score is -2.5 or lower you are considered to have established ( or severe) osteoporosis. The scale seek doesn't exist, so we veer off.
Other describe four stages. On this scale -2.5 T score with a fracture would be considered stage 4. You' would be at stage 3 until (luck forfend) you fracture.
Being small boned can exaggerate your bone loss on DXA. And DXA doesn't measure at bone quality. Still, you don't want to fracture and be stage 4 especially in the spine. You never recover the height of the vertebra after spinal fractures, in spite of the best efforts of kyphyplasty.
I think:
You have a good plan for May.
No skydiving, motorcycles, heavy lifting-- especially while bending or twisting.
And I'd say that nothing warrants or justifies the use of Prolia.
I fully recommend the use of Forteo or Tymlos.

The replies containing the deepest regret are those who delayed treatment until after fracture and those who took Prolia.

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@gently I have a "funny not funny" story. I saw Paul Miller, M.D. in CO, an internationally recognized physician specializing in metabolic bone disease. He is widely considered a leading authority on bone biology, prevention and treatment of metabolic bone disorders, including osteoporosis, and has recently retired. He was old school and my first visit with him lasted 90 minutes!

He was there when they were deciding on scores for a legit OP diagnosis. He said some MDs wanted the number to be -2.0 and some wanted the numbe to be -3.0 so they compromised at -2.5 so it's not exactly scientific.

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