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Younger than usual with severe osteoporosis
Looking for others with severe osteoporosis at a "youngish" age, for mutual support. I am 53 with severe osteoporosis---t-scores: lumbar -3.7, and femoral neck -3.2. I had a vertebral compression fracture at age 50, but wasn't given a DEXA scan until 2 years later.
Like so many, I did everything right in my adult life--exercise, healthy diet, supplements. It's at least, in part genetic, and partly because I am very petite and thin. My mother is almost 80, was diagnosed with osteoporosis in her 50s, but even now, without any treatment, her t-scores are not as bad as mine.
In May, I had my first Prolia injection. My insurance denied coverage for Evenity. No other options were given to me. The advice I received was, "Don't worry, take suppliments, keep exercising, and don't fall."
I am hopeful, while being realistic. I'm looking to connect with others who understand.
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@gpt
I just checked and I, a 62 year old man, had a level of 120 nmol/L .
I read this could be low for a couple reasons.
That I was stressed at time of blood draw. Or a sign of a low adrenal glands.
The test was done when I was in severe pain, Decompressed disk and the effects of multiple rib fractures. Plus the uses of narcotic pain medication. Most likely not an accurate testing time.
Parathyroid tumor (usually benign) can cause this. They would need to check calcium and parathyroid hormone
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1 ReactionOur standard medical system is so broken when it comes to bone health! The fact that you had fractures and no immediate DXA is the first problem.
Are you in HRT and testosterone? Have you had CTX and P1NP tested to corroborate DXA scores? Can you get to an OsteoStrong clinic that does REMS scans?
Look into Dr. Nick Birch, Dr. Doug of OsteoCollective (YouTube good start for both) and Igir Klibanov’s book Osteoporosis Reversal Secrets. Whether you choose to do meds or not, these resources can give you solid background on the power you have to make a difference.
I would not trust DXA alone for meds pathway.
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2 Reactions@jillianb Thank you, I did notice this condition while reading up on possible health issues.
I all notice my spelling mistake of Decompressed disk, was to be compressed disks.
I will research this condition.
@cfbutler
Thank you, I zmbnot sure of the acronyms, I have had a bone density and CT scan, with blood work. I am on a Testosterone gel twice a day. I did reply with a result of 120 nmol/ L that is low for a 62 year old man. I will have to research the test you referred to.
I live in Canada and in the past 8 years the health care has dropped a lot. Yes I believe not telling me I had multiple rib fractures and telling me to go home and relax was very poor health care.
We have a system that allows us to see all medical records and reports to share. Unfortunately at the time I was in severe pain. After reading up on my condition I should have been put in intensive care, with the testing done. I actually think I should of been put in a coma to stop the nerves from reacting.
Thank you once again
@gpt
I’m sorry to hear about your experience. That’s terrible in an scute situation, in particular. The CTX and P1NP are two tests the measure the amount of osteoblasts and osteoclasts occurring in your system. The doc should be fully aware of these as they are common.
HRT is hormone replacement therapy that many post-menopausal women need but don’t often get due to outdated beliefs/information. For men, it’s focusing on testosterone primarily but you should have a complete work up, which hopefully they did when they found you had low testosterone.
The DXA is the x-ray based scan that determines bone density and has incredible value but can be flawed in its use, as well as limited to density rather than overall bone strength.
REMS is Radiofrequency Echographic Multi Spectrometry and is a scan that uses ultrasound to measure bone density and strength of bone through 3d imaging and is known to be highly accurate for determining overall risk fracture and bone health. It is not yet covered by insurance and typically available through OsteoStrong clinics. I hope they become more prevalent soon.
I hope you find relief. The trauma to the nervous system can be incredibly challenging.
Hello Osteporosis members. It is important to remember to keep your medical provider in the loop when considering new exercise, supplement or treatment options. Unfortunately, there are many websites, YouTube channels and promises of cures and osteoporosis reversing regimens that are not provided by qualified medical professionals or rooted in science.
With that being said, some supplements, exercises and lifestyle changes have shown to help with bone health. Here are a few resources that can help navigate some of the difficult decisions and information regarding Osteoporosis:
- https://www.mayoclinic.org/diseases-conditions/osteoporosis/in-depth/osteoporosis-treatment/art-20046869
- https://www.mayoclinic.org/connected-care/osteoporosis-what-mayo-clinic-experts-wish-you-knew/cpt-20561803
- https://www.mayoclinic.org/healthy-lifestyle/adult-health/in-depth/bone-health/art-20045060
- https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-osteoporosis-and-a-bone-healthy-diet/
As always, keep your provider informed on any changes you make to your diet or exercise regimen as well.