27M diagnosed with severe osteoporosis (Spine Z-score -4.8)
Hi everyone,
I’m a 27-year-old male and I recently found out I have severe osteoporosis. I discovered this completely by accident after my doctor recommended I get a DEXA scan, and the results were quite a shock.
Here are my numbers:
Lumbar Spine (L1-L4) Z-score: -4.4 (with my L2 specifically at -4.8)
Femoral Neck Z-score: -3.5
Total Hip Z-score: -2.8
To give some background, I have a history of taking acid reflux medications for several years. On top of that, my Vitamin D levels have been chronically low (under 30 ng/mL) for about 10 years. During the COVID pandemic lockdowns, when my physical activity dropped to zero and I was stuck indoors without sunlight, my Vitamin D dropped to a severe low of 9 ng/mL. My recent tests show it has finally crossed 30, but the damage to my bones is already done.
Currently, my doctor has ordered a comprehensive list of lab tests (Cortisol, 24-hour urine calcium, hormones, etc.) to investigate any other secondary causes. He also mentioned that I will need to start a medication from the Teriparatide family to rebuild the bone.
Here is my main concern regarding the medical side: the doctors haven't been very clear with me about the long-term plan. I am very confused about whether starting this treatment means I will have to be on some form of osteoporosis medication for the rest of my life, and I don't fully understand how the medication cycle works for someone my age.
On a personal level, this diagnosis has severely impacted my daily life. I recently received a job offer for an office position, but I am terrified to accept it. I am also second-guessing whether I should continue my university studies. Lately, I have practically locked myself at home because I am constantly afraid that a minor bump or accident out in the real world will cause a severe fracture.
My questions for the community:
Has anyone around my age successfully reversed Z-scores this low (-4.8) using Teriparatide?
How does the long-term treatment plan work for a young adult? Do I really have to take osteoporosis medications for the rest of my life once I start?
How do you manage the daily fear of fractures? Is it safe for me to go to an office job or attend university classes, or am I right to be this cautious?
What specific questions should I ask my doctor once my secondary lab results are ready?
Thank you so much in advance for your insights and advice!
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I’m sorry to hear you’re dealing with osteoporosis at such a young age.
Table 1 in this article lists secondary causes of osteoporosis, including medications:
https://pmc.ncbi.nlm.nih.gov/articles/PMC5335887/
It’s great that you’re working with your endocrinologist to investigate the cause(s) of your low bone density.
Many people here have felt the same overwhelming sense after an osteoporosis diagnosis. Bone health can be affected by so many factors - nutrition, exercise, and underlying medical conditions… A wide range of topics is discussed in detail on this forum. I think continuing to work closely with your endocrinologist to complete the investigation before starting treatment is the right approach. If a secondary cause is found, treating it is key. I wouldn’t let this diagnosis stop me from pursuing college or an office job. I’d focus on good nutrition, appropriate exercise, and avoiding high-risk activities.
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9 ReactionsForteo is a great bone building osteoporosis drug.
@gently has commented on it frequently and has great knowledge. Go up to members and type in gently
Then click on comments.
I took forteo for two years and had good gains and no noticeable side effects.
You can also go to search 🔍 at the top of this page and type in forteo. You will then see a number of discussions.
Another great site for gaining more information on YouTube is the OsteoBoston group
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3 ReactionsEren1998, the doctors aren't clear with you because the use of these medication won't be clear without knowing if you have a secondary cause of osteoporosis, which is likely given the rarity of of osteoporosis in men only 27 years of age.
If you had hyperparathyroidism, you would have the offending gland removed before taking teriparatide. If your testosterone is low, you'd be given supplemental testosterone. In either of these two situations you might be given a few years course of protective teriparatide which might not need to be followed by further osteoporosis medications.
Your bone loss seems to be primarily trabecular the softer lacy bone at the center of the discs and in the measured area of the femur.
While you do want to be careful with lifting and twisting, it doesn't help your bones to be physically inactive.
You should proceed with your studies and the office work, unless it involves lifting and bending.
It is pretty scary and I can see why you'd want to lock yourself in and not move at all.
Fractures in the spine are quite painful and they don't recover the way cortical bone can to the original shape.
You are getting very good care, sooner would have been best, but
Teriparatide is a great drug and can recover what you've lost.
I think your doctor will cover this without your asking but there are several suspects in your case. Be sure to get answers through the doctor but by the labs for testosterone, parathyroid hormone, thyroid hormone, and autoimmune disease. If your serum calcium is normal ( it usually is except with low D and parathyroid disorder) you might ask for an ionic calcium level--measuring the level of active calcium.
You should get those lab results quickly. When is your next appointment? Is your doctor an endocrinologist? They seem quite capable.
You might also ask about abaloparatide, which may have stronger effect than teriparatide.
Welcome to Connect. We are full of advice even if not insight.
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7 ReactionsI am sorry you are experiencing this and your doctor has not explained things well. Sometimes you need to bluntly ask them to explain and what the plan is.
I used Forteo years ago and had great results. Then Reclast which gave me horrible jaw pain. I took nothing for too many years to remember! I stayed in the osteopenia category for all that time. Last year osteoporosis showed its ugly self again! I am now on Prolia as a last resort I guess. It should only be a last resort in my opinion!
As for the fear of fracture, I think you have to just be mindful of what you are doing. Exercise, without being crazy about it, eat well, take what ever meds you settle on and give the rest to God. I’d take the office job. It would be a positive step. Definitely continue your college classes. It would keep your mind off the possibility of fractures. Praying for you.
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3 Reactions@gently Eren, I agree with Gently- get the labs as quickly as possible. If you need to be referred to other specialists, ask the Dr to have his staff call on your behalf, or get an "urgent referral". I was going to have to wait 7 months for an appt with a rheumatologist, urgent referral got me in in only 6 weeks.
Don't despair, bone density is fixable. On your end, you need to become your own advocate. Educate yourself so you know the questions to ask. If you don't understand, ask.
You can get through this, and your youth is an asset! Go to the main osteoporosis thread here and you can learn a lot there. Consider an institution like the Mayo clinic where you can get testing done quickly over a couple days.
I am on abaloparatide (Tymlos) for 11 months now, with very strong results.
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3 ReactionsI agree with everyone. Get all your labs done, look at your diet. Are you getting enough calcium, protein, vitamin D, K2, C, MAGNESIUM, and omega 3.
If you can find someone trained in onero, or bone fit trained hire them.
My daughter in law has a friend a bit older than you that also was diagnosed with severe Osteoporosis when he was 35. One they started him on testosterone it reversed. Strength training is key.
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2 Reactions@maryandnans
Thanks for posting this info on loss of testosterone and male osteoporosis.
https://pmc.ncbi.nlm.nih.gov/articles/PMC5376477/
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1 ReactionThanks, guys. The lab called me and asked me a bunch of questions. I think my testosterone might be low. They asked me questions about sexual activity, hair loss, and...
I haven't gotten the final blood test results yet.
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