Help!

[Texas03]

Looking for support I am new here, I am 47 years old already have had 3 spontaneous fractures and three surgeries, my right foot, my left hip, and now just got through a surgery on my right hip they used screws in this one. I am beyond depressed and literally have no life. My Dexa scan just showed osteopenia, my Vitamin D and Calcium levels are normal. I have an appointment with an endocrinologist at the end of August, it seems everyone just scratches their head and have no answers for me and just tell me I am to young to be going through this. Any advice would be greatly appreciated. Thanks

[orcagirl]

I am so sorry to hear that you are going through this. When I first was diagnosed a few months ago, I too felt depressed. I am 52 and have had 2 fractures in the past 3 and a half years (slipped on water and fractured my knee in 5 places and tripped on my snowshoes in a park lot and fractured my shoulder). My DEXA scan showed "severe osteoporosis in multiple locations." The doctor who ordered the scan didn't give me much advice other than having me start Tymlos - which I did about 6 weeks ago. I have an appointment tomorrow with the Strong Bones Clinic in Seattle. They specialize in treating osteoporosis and I am really hopeful that I will get some better advice and recommendations. It seems that in Texas you should be able to find a clinic that is similar. Hopefully. I just haven't felt that I am getting the level of care I want from my current doctor. You deserve to be treated by a doctor who has more compassion that what you are getting right now. Keep advocating for you health. I am also going to start working with a personal trainer as soon as I can. I want to become much stronger and have guidance in what weight bearing exercises I should and should not be doing based on my DEXA numbers. I do know that this diagnosis has made me hyper-vigilant when hiking. I am hoping to get back to a time when I could hike, bike, etc. without being paranoid of falling and breaking a bone. I think it is expected and normal to feel depressed after getting a diagnosis like this, but I also believe that it is treatable and can be reversed (from everything I have read).Take care,

Sandy

[Oscarbuddy in reply to orcagirl]

Great to hear you are still doing ok on the Tymlos. I just started last week and , like you, felt slightly nauseous with a slight headache. Today was my 8th dose, and I still felt it slightly. I also am seeing an endocrinologist (some developing thyroid issues), and she referred my to another endocrinologist who specializes in osteoporosis. Like several of us, I feel very depressed to have this condition without understanding the causes. I feel like there has got to be something else causing this. I am 59, and somewhat active, but my DEXA scores are very low. Thank you for sharing your experiences! Good luck!

[Mark_ABH]

Hi Texas 03, thank you for joining our forum. I hope you can find some support and information here that will help you on your road to recovery and better health. At your age, if you're having broken bones without trauma, that means there is probably an underlying health condition causing your bones to weaken. This is called secondary osteoporosis -- as opposed to primary osteoporosis, which is age-related. Here is a list of potential causes of secondary osteoporosis, along with a rundown of tests your endocrinologist might have you do: americanbonehealth.org/bone...

There are many health conditions that can cause bone loss, such as diabetes, HIV, cancer, kidney disease, and hyperparathyroidism. There are a lot of medicines that can cause bone loss: corticosteroids, cancer treatments, certain antacids, high doses of thyroid medications. Then there are lifestyle factors: lack of exercise, smoking, heavy drinking. Any combination of these can add up to weakened bones.

The American Bone Health Fracture Risk Calculator is a tool that takes these and other factors into account to give you an idea of you risk of breaking a bone in the next 10 years. Take a look to see how they all fit together: americanbonehealth.org/calc...

I think you are doing the right thing by seeing an endocrinologist. Bone health is complicated, and you need someone who knows what to look for. Good luck!

[Texas03 in reply to Mark_ABH]

Thank you so much this is the best information I have ever received! Again thank you so much for taking the time to respond I am definitely going to check out all the information you sent so I can be well informed at my appointment!

[AnnieW55 in reply to Texas03]

Hi and welcome. You have had some great advice just wanted to add that taking vitamin k2 (from natto) supplements or eating actual natto for k2 could be helpful.

I know surgery isn’t pleasant but I think the fact that your hip was fixed with the hip screw is good news as I think it would mean that your bone was strong enough to be fixed by this method. At least that’s what I’m hoping as I have a dynamic hip screw too; it was put in in October 2018 when my neck of femur broke (no fall involved) near the end of the marathon I was running at the time. Best wishes.

[Oscarbuddy]

Thank you for sharing your story! I have felt very depressed regarding diagnosis, (my T-scores are in the -3.0, -4.0 range). There is no clear cause for me except for menopause. But, in all the blood tests I have had in the last 2 months, an endocrinologist found that I have subclinical hyperthyroidism. It basically means my Thyroid Stimulating Hormone is low, but my T3 and T4 scores are normal. (there's more to it than that and I have further tests upcoming to confirm) This could be contributing to my osteoporosis, so I would ask your doctors to do a thyroid workup. Also, orcagirl has great advice in looking for an osteoporosis clinic in your area. Definitely at the minimum see a specialist like a rheumatologist or endocrinologist. Good luck! Chin up and thank you for reaching out. This forum is excellent for finding other people that are going through the same struggles.

[Texas03]

Thank you everyone for your kindness and support I see an Endocrinologist at the end of August.

[Met00]

You don't mention having your parathyroid levels tested, which should have been done at the same time as Vitamin D and calcium. The parathyroid hormone regulates calcium in the bones, but when there's an issue with one of the 4 parathyroid glands (different from the thyroid), it can lead to raised parathyroid levels (hyperparathyroidism), resulting in too much calcium in the blood and not enough in the bones. Apparently it's also possible to have hyperparathyroidism with normal blood calcium levels. Hopefully your endocrinologist will check this, if it hasn't already been done. It's a fairly common cause of "unexplained" fractures and loss of bone density in younger people.

[Hidden]

Not sure what area of Texas you are in, but there are some clinics that offer DEXA scans with TBS. I highly recommend looking into this if you have not already done so. I saw one endocrinologist who didn’t see any value in TBS - so I found another endocrinologist who does monitor TBS along with DEXA. The cause of my multiple fragility fractures in mid-50s still is not known, but the TBS scores reflected bone quality much worse than my DEXA bone density scores. Medimaps website can help you locate a clinic that performs DEXA w/TBS.