Looking for info

Posted by amyinnc @amyinnc, Jul 10 2:53pm

I am 51, have been diagnosed with severe osteoporosis and have been on Tymlos for a month now. After reading some discussions I'm realizing I haven't been taking this as seriously as I should. My primary diagnosed me; should I have a different doctor to handle this? I have terrible back pain but a doctor at the pain clinic said osteoporosis doesn't cause pain, thoughts? My dexa scan was -3.7, how often is normal to recheck? I'm afraid to exercise for fear I'll fracture something, suggestions? Any help/feedback would be greatly appreciated.

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

Hi. I’m 52, also recently diagnosed with a minimum T score of -2.9. My PCP immediately referred me to an endocrinologist, and everything I’ve read online suggests this is the way to go. I’m still working my way through initial appointments. Most endocrinologists I’ve found who seem to specialize in osteoporosis are booked out for several months.

Also, search for this discussion: “Newbie confused by doctor options to choose, including Keith McCormick”. Many helpful comments have been posted there.

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Thanks so much! Good luck on your journey

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@amyinnie,
you are on the best medication for your condition. Cheers to you PCP. It is so easy to get started on the wrong one.
You may already have a fracture and need an MRI to rule fracture out. And to discover the cause of your low back pain. Neither dexa nor x-ray are sufficient. You might ask the PCP for an MRI with and without contrast.
You'd want an endocrinologist to understand if you have a secondary cause for osteoporosis. Both you and @newenglandtransplant are a bit young to have osteoporosis. A secondary cause might indicate the need for additional treatment or a change in medication. Endocrinologists are the best informed test for secondary cause.
best wishes

Osteoporosis has been called the "silent" disease because you have it without symptoms until you fracture. To say osteoporosis isn't painful is a disconect between cause and effect that you can apply to any disease.

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@amyinnc and @newenglandtransplant there is a big difference between -2.9 and -3.7. Some people at the -2.9 level are still doing holistic approaches.

I fractured at -3.7 (spine) from an unwise and somewhat extreme movement. @amininnc Tymlos brought my spine back 20% to borderline at -25. It is a good drug and helps to heal fractures and microfractures, if that is relevant.

Osteoporosis does not cause pain unless you have fractured but there are many other possible causes of your pain. I hope you get help for it!

For now avoid bending, twisting, lifting or carrying too much weight. Tai chi helped me as did a PT who taught me how to move safely.

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I was diagnosed at 54 yo. They finally determined, after a lot of whining on my part as to why and a number of different tests, that I had Celiac disease. I'm what is considered silent in that I have never had any gastrointestinal problems. Since you are so young I would at least have your doc check for Celiac; it is a simple blood test.

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@ann707

I was diagnosed at 54 yo. They finally determined, after a lot of whining on my part as to why and a number of different tests, that I had Celiac disease. I'm what is considered silent in that I have never had any gastrointestinal problems. Since you are so young I would at least have your doc check for Celiac; it is a simple blood test.

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I am actually scheduled for an endoscopy and colonoscopy (my first w/ a mom who passed from colon cancer). Definitely have something going on and am hoping for the best. My doc just doubled my omeprazole from 40 to 80 a day and I'm also taking a med that coats my stomach. I will definitely mention the Celiac to my doc and do some research, thanks for the feedback

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@windyshores

@amyinnc and @newenglandtransplant there is a big difference between -2.9 and -3.7. Some people at the -2.9 level are still doing holistic approaches.

I fractured at -3.7 (spine) from an unwise and somewhat extreme movement. @amininnc Tymlos brought my spine back 20% to borderline at -25. It is a good drug and helps to heal fractures and microfractures, if that is relevant.

Osteoporosis does not cause pain unless you have fractured but there are many other possible causes of your pain. I hope you get help for it!

For now avoid bending, twisting, lifting or carrying too much weight. Tai chi helped me as did a PT who taught me how to move safely.

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So happy to hear your results with Tymlos; I hadn't hears of anyone taking it or what results were. I also think PT would be a good move, I have no idea what I'm doing and would prefer to be proactive. Thanks for the tips and the feedback!

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@amyinnc

I am actually scheduled for an endoscopy and colonoscopy (my first w/ a mom who passed from colon cancer). Definitely have something going on and am hoping for the best. My doc just doubled my omeprazole from 40 to 80 a day and I'm also taking a med that coats my stomach. I will definitely mention the Celiac to my doc and do some research, thanks for the feedback

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I 'm not sure what the endoscopy is for but as long as they are looking around you can have them do a biospy for celiac. That is assuming they had a positive celiac marker result.

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Endoscopy examines the upper part of the digestive tract. While a general endoscopy would not be examining for celiacs, villous atrophy might be evident. ann707 your reply is so helpful because the endoscopisist would be better prepared if a biopsy were requested for celiacs disease since that erosion is a microscopic finding.

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@gently

Endoscopy examines the upper part of the digestive tract. While a general endoscopy would not be examining for celiacs, villous atrophy might be evident. ann707 your reply is so helpful because the endoscopisist would be better prepared if a biopsy were requested for celiacs disease since that erosion is a microscopic finding.

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If I recall they sample several spots to look to see how the villi look. In the case of celiac the villi are stunted so they can't properly absorb nutrients. Since the body has many functions, think heart for one, for calcium it takes it from the bones. Not too good for your bones but it does keep the rest of you functioning.

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