Younger than usual with severe osteoporosis

@activebcgal the first endocrinologist I consulted with told me to lift no more than 10 pounds. This would have been a massive change for me as I’ve been lifting weights since I was 18 (I’m now 52). I’m still navigating treatment options as I chose to seek a second opinion at Mayo, an opportunity for which I am incredibly grateful.

During my first appointment with my Mayo endocrinologist, he took a thorough history including understanding my activity level. He sent me for an appointment with a physical therapist who is well versed in OP, and she did a detailed review of my workout practices. She was able to help me understand what I can continue doing, what I need to modify, and what I need to stop (goodbye my beloved Pilates!) Both the doctor and the physical therapist told me their recommendations were based on what I had already been doing for many years - the recommendations would be quite different if I were starting something new. I’m guessing my T score also is a factor - my lowest score is lumbar spine at -2.9.

As far as how much I can lift, I will be able to continue weight lifting at my current level with some adjustments and limitations. I will not progress to heavier weights.

All this is to agree with @researchmaven - what is going to be right for you is going to be a very individual answer. If you are able to meet with a physical therapist who specializes in OP, I highly recommend it. I left my appointment still understanding that my life has changed a bit and still feeling knocked sidewise with this diagnosis, but feeling less frightened about what I will and will not be able to do.

I’m still navigating this myself and don’t yet have a treatment plan (that’s expected next week). I can tell you that you’ve found a great place to find resources - the sharing by the folks on this forum has been an absolute gift.

Insist on a scan of your adrenal glands. It was an “incidental discovery “ when I had a chest X-ray. I, too, have osteoporosis which was discovered at an earlier than normal age and very advanced. It was discovered that I have bilateral Adrenal Adenomas. I see my Endocrinologist soon. A Family doctor told me not to worry about them because they were discovered incidentally. If you look up adenomas of the Adrenal Glands, severe Osteoporosis occurs due to chemicals being released from these “ non functioning tumors”. It has been discovered that these Adenomas need to be addressed. Look this up….it was so amazing that it fits my problems to the max. Be a squeaky wheel, there is a reason you have advanced Osteoporosis.

Thanks for asking her. I appreciate it.

Thank you @newenglandtransplant and @researchmaven for your insights on weights. OP is a bit of wild card for all of us when it comes to exercise. I think a mix of professional advice and real-life experience is helpful.
I wonder how it is that we can do weights most of your life (like newenglanddtransplant) or run for 3 decades (like me) and still get OP. But we did! I suppose it can be genes or perhaps an underlying issue that an endocrinologist could diagnose. Still lots to learn!

Seeing my Endocrinologist soon for Bilateral Adrenal Adenomas. I like to educate myself as to what this is, and found this info.My bilateral Adrenal Adenomas were discovered accidentally when I was given a chest X-ray. My family doc said not to worry, it was found incidentally, so nothing needed to be done. I researched it and discovered that cortisol affects the bones ……and the adenoma could be producing additional cortisol over the years.

I have Osteoporosis, advanced for my age. Both hips are replaced and 3 ribs broken. Other symptoms Cortisol creates is an increasing of sweat…. I drip sweat just going to the car. Exhaustion, brain fog, hypoglycemic episodes, aches all over are just a handful of my symptoms.

I am ready for my appointment.

Hello, I'm new to this forum and only a couple years since my diagnosis. I'm now 66 years old and before this surprising diagnosis I took no medicines. I was advised to get a DEXA only after a fracture in my back. My original T-score was -5.5 in Lumbar spine, -3.8 Femoral neck, -3.9 in hip-3.6, pretty severe I know!
I have just finished a year of Evenity. I had no side effects, and my new scores are Lumber-4.8, Femoral neck -3.6 and hip -3.3.
My doctor wants me to start Prolia, but her statement "for the rest of your life" was really is concerning. I'm trying to do all the right things with supplements and working out, but I know I will have to start something soon to lock in gains and hopefully avoid more fractures. Is Prolia my only option, and will it be for the rest of my life? I appreciate any insights and advice, Thank you.

Hi @dgtx. Congratulations on your gains after Evenity! Did you have a TBS as well? There are several medications that are commonly prescribed after Evenity. Did your doctor not mention them at all? Is she a specialist in osteoporosis? Sometimes patients may have comorbidities that preclude certain medications, but you mentioned not being on medication prior to Evenity so I'm guessing that's not the case for you.
There is a lot of information here regarding medications after Evenity. You can enter your inquiry in the search bar on this website. Hope that's helpful!
Best wishes to you moving forward.

See if you can stay on a vanity for another year or ask for Tymlos or Forteo ( generic is called teriparatide-) They build bone. You stay on them for 2 years, then go on something else. You are not going to get the same bone building effects from prolia. Im afraid of prolia because of potential osteochronosis of jaw and fractured of the femur. But everyone is different, I wish doctors understood that.

Thank you for your response. I haven't had a TBS, I can't find a place to get one? My Dr is an Endocrinologist, she only mentioned Prolia or Reclast as options, she prefers Prolia. She seems offended if I ask too many question so I don't know about her osteoporosis background except that she mentions her other patients. She said that I can only be on Evenity for 1 year, and I have to make a decision within the next 30 days so I'm feeling a lot of pressure. I just had my last round of shots a week ago. Can Evenity be followed by Tymlos or Forteo? I don't have comorbidities except for high blood pressure which just started since being on Evenity. Thank you for the info

Hi @dgtex. As far as I know, Prolia and Reclast are currently the most common choices prescribed after Evenity. My doctor prescribed Tymlos after Evenity - that's very unusual. After one year of Evenity and one year of Tymlos, I recently started Reclast. Forteo is another option, but I think that is also not common. Considering that it might not be possible to find a new specialist in such a short time frame, you will be dealing with your current endocrinologist. Prolia does not have to be for life. Another thing for you to consider is whether or not you feel like you would be able to tell your doctor you don't want to be on Prolia and would prefer Reclast if that is what you decide you want. Do your research on the various drug sequences. There's a lot of information on this site!