Recently Diagnosed - Which next steps are crucial?

[Osteoequestrian]

I am newly diagnosed after a recent BMD test. First BMD in Dec 2018 had T scores:

Lumbar Spine -0.1

Left Femoral Neck -1.8

Right Femoral Neck -1.3

Left & Right Total Hip -1.6

Forearm Not given

Second BMD Aug 2022 had T scores:

Lumbar Spine -0.5

Left Femoral Neck -2.1

Right Femoral Neck Not in my report

Left & Right Total Hip Not in my report

Forearm -2.5

Based on these results they have now classified me as osteoporosis instead of the osteopenia of 4 years ago. After the test in 2018 I started D3 and calcium supplements, but apparently that wasn’t enough. I’ve already changed to a different calcium supplement, and also added vitamin K2.

What questions should I be asking my primary care physician when I meet with him Sept 1st to create a medical management plan for my situation? What other kinds of tests should I ask for before we start trying heavier prescription meds?

A bit of background for me…63 post menopausal woman. Mother had osteoporosis and osteoarthritis. My FRAX score seems to indicate about a 30% chance in next ten years. I ride horses weekly, and don’t want to end that form of exercise in my life.

Thanks for any suggestions you might have as I begin this journey. Up until last week, I thought this was my mom’s disease. It saddens me that it is now mine as well.

[NY2GANANA]

Research all options, get a second opinion from a specialist in the field, don’t rush into anything before making an informed decision. My scores are -3 in both hips and spine, I added vitamin D3 with K2 and magnesium to the multi vitamin, calcium, and zinc I was already taking. I am 62, post menopausal for 20 years and take synthroid for hypothyroidism. I have opted to not take any drugs for my osteoporosis. Also in my research I read about the importance of having a healthy digestive system and limiting alcohol and caffeine. Also trying to get weight bearing and balance exercises added to my daily routine. Good luck in your search and decision. I pray for all of us to get the information we need to make a decision.

This article was informative.

betterbones.com/bone-drugs/...

[Osteoequestrian in reply to NY2GANANA]

Thanks so much! I’ve done quite a bit of research in the last few weeks. At my appointment on Thursday, my doctor suggested Fosamax 3 times, and I graciously turned him down three times. I asked him about how we find the cause of my osteoporosis score, and he said without a pause or a blink, “that’s easy…you are post menopausal.” 🤦🏼‍♀️ I had a whole list of questions based on the reading I’d done, but came out with very few helpful answers. We did agree to reduce my dosage of my cholesterol meds, so that was a small win. I sense that I’m in this on my own, with the help of great support groups like this and a lot of time doing my own research.

[Met00]

Unless you've had a fragility fracture (one with little or no impact, for example falling from standing height), I don't see how those scores equate to osteoporosis. Yes, your forearm score is -2.5, which is JUST on the edge of osteoporosis, but given that there's a wide margin of error in DEXA scanning, your other scores are still within the osteopenia range and the forearm is difficult to scan accurately, I can't see how that puts you at such high risk of fracture. Are there other factors that increase your fracture risk, apart from family history, for example do you smoke, do you take medications for another condition that can affect bone strength? I would definitely ask for Vitamin D, calcium and parathyroid levels to be checked in the same blood draw, and to do blood tests for thyroid and coeliac and a full blood count. I would also want to know how you've ended up with such a high fracture risk with such good t-scores. My most recent scores (scanned age 64) were -2.8 neck of femur, -2.5 total hip, -2.3 spine, yet my fracture risk (from FRAX) was only 8.4% for major osteoporotic fracture and 1.8% for hip fracture.

[Osteoequestrian in reply to Met00]

The doctor only had a 10% fracture risk in his notes…I guess I got the 30% from one of the fracture risk assessment websites I’d found. In my younger days I had been on both birth control pills and also inhaled asthma meds for way too many years. I’ve never smoked. My weight is great for my body size. We did agree to drop my cholesterol meds dosage in half, so that was a relief. The only test he would agree to was a vitamin D test…and that was almost double of what it was 7 years ago, yet still in the normal range. I had a CBC done last week for another medical procedure, and all those values looked great. I asked the doctor about getting tested for celiac, since my mom had it. But he told me that it wouldn’t be done unless I start exhibiting symptoms, which I don’t have…except for the osteopenia/osteoporosis. I’m grateful that the chiropractor I recently started working with has a tremendous background in nutrition…I have a feeling that she will be my new “go to” person to help find more answers. Thanks for taking the time to reply! 💕

[FearFracture]

Go to my bio, there you will find 2 links. One is to a list of tests that you should review and possibly have done. The other is a pdf on bone turnover markers—you should also have your bone turnover markers tested/checked. My endocrinologist failed me and didn’t run any of those tests prior to pushing osteo-meds. Knowing what I know now, I don’t recommend taking any osteo-meds until you have those tests run.

Also Click if you want to watch a replay of a bone turnover seminar that goes with the pdf link in my bio, go to

food4healthybones.com/bone-...

This is a "password protected" page with clear instructions how to listen to the replay. And this replay option will only be available until 6 pm ET Friday 8-26-22

[yogalibrarian]

Interesting.

1. I'm surprised that you would be classified as osteoporosis based on your forearm score when your hip and spine scores don't indicate osteoporosis. Many centers don't even collect forearm data.

2. It appears that these scans were done at different facilities on different machines. Is that true? If that is true, Did the facility in 2022 have access to the 2018 reports and use them for positioning and calibration? Scans on different machines are difficult to compare.

3. If you have a FRAX of 30%, what other fracture risk factors do you have? Assuming you are of average height and weight and don't have other risk factors, I'd estimate your 10-year risk as closer to 10%

4. However, having other risk factors could easily drive your risk into a much higher category. Some of the major factors are long-term use of steroids, rheumatoid arthritis, diabetes, previous fracture, a parent with a hip fracture. There are others as well.

5. Yes, you definitely need a bone health plan -- but we all need one. Your fracture risk drives what is in that plan. Everyone needs a healthy diet (with adequate calcium and vitamin D), a good (weight-bearing) exercise program, and minimizing an unhealthy lifestyle (smoking/vaping,, high alcohol consumption). But you may need to go beyond just that basics to improve bone health and minimize fractures. What that plan includes depends on where you risk is coming from.

6. There are several documents on the American Bone Health website that can help you prepare for your appointment and determine what questions to ask.

americanbonehealth.org/down...

7. Your doctor may want to do additional lab tests. Those will depend on what s/he determines are the factors that are driving the risk.

8. If your risk really is 30%, and your doctor is considering an osteoporosis medication, then a specialist provider with expertise in osteoporosis-- such as an endocrinologist or rheumatologist.

9. Your spine T-scores look good. I wonder if that is related to the good stresses put on the spine by horseback riding. But riding can increase your risk of a fracture from a fall. I had an exercise student a few years ago who was reconsidering riding because her fracture risk was already high. (She did decide to stop riding after a friend was seriously injured in a riding fall.)

Good luck with your appointment.