Osteoporosis: What tests confirm diagnosis and treatment options?

Posted by leeosteo @leeosteo, Jan 12 1:56pm

I was diagnosed with Osteopenia in 2014 which progressed to Osteoporosis in my spine in 2016 (as result of DEXA tests). I was on Alendronate for almost 5 yrs and have been on a medication holiday since 2019. My 2022 DEXA now shows progression to Osteoporosis in spine and hip. I'm meeting with my PCP next week to discuss next steps. Net, I'm really worried with disease progression and frightened with going back on Osteoporosis meds. I've read that Osteoporosis should not be diagnosed only on DEXA. What has been your experience? Are there other tests that should be considered? Are you using a PCP or other type doctor to walk you through your options?

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

Hi @leeosteo, I've been working with my PCP on bone health/fracture risks but I've also been doing a lot of research and reading for my own satisfaction. Here's a good reference on bone density testing that you might find helpful:

— Patient education: Bone density testing (Beyond the Basics):
https://www.uptodate.com/contents/bone-density-testing-beyond-the-basics

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I understand your concern and fear. This diagnosis is a hard one. Bone loss generally first occurs in the spine, followed by loss in the hip so the progression is natural as we age. Some bloodwork should be ordered to determine if there is a cause other than age/genetics. A PTH test will show whether excessive parathyroid hormone is the cause. I would also suggest testing TSH as if you are hyperthyroid, that can cause osteoporosis. The other test you can consider is a calcium urine test to see if you are excreting too much calcium. And lastly, you might want to test your Vitamin D levels to make sure they are optimal (much debate on what optimal is but they should at least be adequate).
You might consider finding an endocrinologist or rheumatologist to work with. Both of these specialties will have knowledge on managing osteoporosis.

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@teb

I understand your concern and fear. This diagnosis is a hard one. Bone loss generally first occurs in the spine, followed by loss in the hip so the progression is natural as we age. Some bloodwork should be ordered to determine if there is a cause other than age/genetics. A PTH test will show whether excessive parathyroid hormone is the cause. I would also suggest testing TSH as if you are hyperthyroid, that can cause osteoporosis. The other test you can consider is a calcium urine test to see if you are excreting too much calcium. And lastly, you might want to test your Vitamin D levels to make sure they are optimal (much debate on what optimal is but they should at least be adequate).
You might consider finding an endocrinologist or rheumatologist to work with. Both of these specialties will have knowledge on managing osteoporosis.

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Thank you for your comments. They were helpful. Do you know if high calcium in urine also means high calcium in blood test? Or can you have one or the other?

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Good afternoon @leeosteo, you are certainly asking the right questions. I, too, was overwhelmed by the number of medications available to help prevent fractures. My journey has been a difficult and sometimes frightening experience. One of the things I learned from my endocrinologist at Mayo Clinic was the importance of pursuing a FRAX evaluation. This is a test, a fracture risk assessment tool. You can learn more about it on this link.
http://www.frax.shef.ac.uk.
FRAX will give you the 10 year probability of fracture of the hip, and of a major osteoporetic fracture of the clinical spine, forearm, hip and shoulder.

You may want to discuss this option with your PCP. Absolutely, knowledge gives you decision making power. Do you have additional concerns at this point in your exploration of options to protect you from fractures?

May you be safe, free, and protected from inner and outer harm.
Chris

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@leeosteo

Thank you for your comments. They were helpful. Do you know if high calcium in urine also means high calcium in blood test? Or can you have one or the other?

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Good afternoon @leeosteo. Unfortunately, I do not personally know the answer to your question about calcium. I had real digestive difficulty with a daily supplement and ended up with high calcium. So I talked with my PCP and here is what we figured out. She gave me a list of other ways to ensure sufficient calcium. I tried some of the suggested foods and was concerned about the reaction to other medications. I also found the sugar-free plain yogurts to be pretty tasteless. So my current solution is simple: Chobani makes a Zero Sugar "flavored" yogurt with calcium. I then add Fairlife non-fat milk with 30% of the daily dose and recommended fruits. I end up with at least 60% of my daily calcium goal and find the rest in dinner with salmon and high-calcium veggies.

PS: I sneak in iced yogurt bars for a treat in the evenings. Don't tell anyone!!!!!!!

Hope this gives you a headstart. What have you been using?
Chris

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@artscaping

Good afternoon @leeosteo, you are certainly asking the right questions. I, too, was overwhelmed by the number of medications available to help prevent fractures. My journey has been a difficult and sometimes frightening experience. One of the things I learned from my endocrinologist at Mayo Clinic was the importance of pursuing a FRAX evaluation. This is a test, a fracture risk assessment tool. You can learn more about it on this link.
http://www.frax.shef.ac.uk.
FRAX will give you the 10 year probability of fracture of the hip, and of a major osteoporetic fracture of the clinical spine, forearm, hip and shoulder.

You may want to discuss this option with your PCP. Absolutely, knowledge gives you decision making power. Do you have additional concerns at this point in your exploration of options to protect you from fractures?

May you be safe, free, and protected from inner and outer harm.
Chris

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Right now my concerns are 1) why is this happening – and so quickly, 2) can this be reversed with food/diet/exercise and/or meds? Historically, I'm so sensitive to any medication even Advil, Tylenol, Aspirin. I was seriously sick for 24 hrs after each COVID and Flu-Quadrant shots. When I was taking Alendronate I had constant muscle aches. My prior PCP (left practice) had me on Alendronate but really felt Reclast would be better. With Reclast I was scared of a once/yr IV injection and possible reaction. I'm assuming if Reclast is once/yr IV that it must be a high dose.

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@artscaping

Good afternoon @leeosteo. Unfortunately, I do not personally know the answer to your question about calcium. I had real digestive difficulty with a daily supplement and ended up with high calcium. So I talked with my PCP and here is what we figured out. She gave me a list of other ways to ensure sufficient calcium. I tried some of the suggested foods and was concerned about the reaction to other medications. I also found the sugar-free plain yogurts to be pretty tasteless. So my current solution is simple: Chobani makes a Zero Sugar "flavored" yogurt with calcium. I then add Fairlife non-fat milk with 30% of the daily dose and recommended fruits. I end up with at least 60% of my daily calcium goal and find the rest in dinner with salmon and high-calcium veggies.

PS: I sneak in iced yogurt bars for a treat in the evenings. Don't tell anyone!!!!!!!

Hope this gives you a headstart. What have you been using?
Chris

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I've been keeping a food log for a suspected allergy. In this process I realized I was not getting enough calcium through food. I do take a multivitamin in the morning and Caltrate calcium pill with dinner. This still did not get me to my calcium target. My diet is good with whole foods but more acid then alkaline and low calcium. I know it's best to get calcium from food vs supplements. So now I've been adjusting my diet to include more calcium rich and alkaline foods (mostly fruits/veggies). I'll keep taking my multivitamin and calcium supplements and look for further direction from my PCP.

For now, I've added Simply Orange Juice with calcium/vitamin D, Cabot vanilla yoghurt with calcium/vitamin D (BTW, the only yoghurt I've found that includes vitamin D). These may have natural or added sugar so I'll work to find the equivalent with low fat/sugar. Baby steps!

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@leeosteo

Right now my concerns are 1) why is this happening – and so quickly, 2) can this be reversed with food/diet/exercise and/or meds? Historically, I'm so sensitive to any medication even Advil, Tylenol, Aspirin. I was seriously sick for 24 hrs after each COVID and Flu-Quadrant shots. When I was taking Alendronate I had constant muscle aches. My prior PCP (left practice) had me on Alendronate but really felt Reclast would be better. With Reclast I was scared of a once/yr IV injection and possible reaction. I'm assuming if Reclast is once/yr IV that it must be a high dose.

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@leeosteo I am also sensitive to meds and to many foods. I despaired for many years that I could not tolerate any osteoporosis meds, and meanwhile I was on a cancer drug that worsened bones. I ended up with 7 fractures. I even went to an immunologist for desensitization.

I finally went on Tymlos and discovered that the pen has 8 clicks (Forteo is always full dose). I worked with my doctor and started at two clicks. When side effects settled I increased slowly, step by step until I reached 7 clicks. I have been on that for more than a year with few side effects. Those that do occur, tend to disappear. I still cannot do the full dose of 8 clicks!

I will follow with either Evenity or Reclast depending on DEXA in April. My doc understands my sensitivities and is going to try 1/4 dose Reclast to see how I react. I will hydrate before and after, take tylenol, maybe benadryl, and ask for a very slow infusion. I'll let you know how it goes.

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@leeosteo

I've been keeping a food log for a suspected allergy. In this process I realized I was not getting enough calcium through food. I do take a multivitamin in the morning and Caltrate calcium pill with dinner. This still did not get me to my calcium target. My diet is good with whole foods but more acid then alkaline and low calcium. I know it's best to get calcium from food vs supplements. So now I've been adjusting my diet to include more calcium rich and alkaline foods (mostly fruits/veggies). I'll keep taking my multivitamin and calcium supplements and look for further direction from my PCP.

For now, I've added Simply Orange Juice with calcium/vitamin D, Cabot vanilla yoghurt with calcium/vitamin D (BTW, the only yoghurt I've found that includes vitamin D). These may have natural or added sugar so I'll work to find the equivalent with low fat/sugar. Baby steps!

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Re yogurt, check to see if your preferred brand is available in plain or consider making your own plain yogurt with Vitamin D fortified milk. Making yogurt is pretty easy, and you can skip the extra sugar which contributes no valuable nutrients.

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@leeosteo

Right now my concerns are 1) why is this happening – and so quickly, 2) can this be reversed with food/diet/exercise and/or meds? Historically, I'm so sensitive to any medication even Advil, Tylenol, Aspirin. I was seriously sick for 24 hrs after each COVID and Flu-Quadrant shots. When I was taking Alendronate I had constant muscle aches. My prior PCP (left practice) had me on Alendronate but really felt Reclast would be better. With Reclast I was scared of a once/yr IV injection and possible reaction. I'm assuming if Reclast is once/yr IV that it must be a high dose.

Jump to this post

I went from oseopenia to osteoporosis in what seemed like a short time. I was a very active women, walking 4 miles a day and my bone deterioration did not make sense to me. I had a urine test to determine that I had abnormally high calcium amounts in my urine. I saw an endocrinologist who determined that one of my parathyroid glands (we have four) was overactive and needed to be removed. I am two years post surgery and due for another dexa scan and blood work to see improvement in my bone density. Last year my dexa showed a marked improvement. I am on Fosamax weekly and toleranting it well.
I refused to settle for "older people lose bone density" My mother died at age 90 and never had a broken bone or on any medication. Good luck with your decisions and testing.

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