New Diagnosis & Feeling Overwhelmed

[Johnna707]

Hello new friends.

I'm 45, recently diagnosed, and am feeling overwhelmed. Up until this point, I've been very active with lots of hiking, walking, weight lifting, but am now scared to continue with my physical activity.

My T score is -5.1 in my spine and -4.5 in my hip. Recently, I've been experiencing a lot of bone pain in my feet/ankles/back. I'm going in for an xray of my feet/ankles to check for fractures. Next Tuesday, I begin the daily injections of Forteo. I've started calcium/vitamin D.

Due to the severity of my osteoporosis combined with my age, I'm really worried about what the next few years of my life will look like. I know that I'm going to need to make some big changes, but don't even know where to start.

Any advice for a reluctant newbie?

Thanks...

[Met00]

That's a huge loss of bone density for someone your age. Have they checked your parathyroid levels (not the same as thyroid), which should be done at the same time as calcium and Vitamin D? I hope they're looking for an underlying cause.

[Johnna707 in reply to Met00]

Yes, they have. They're baffled too. They've referred me for genetic testing to see if there might be a reason for all this, but so far, no luck. I'm in the Bay Area and am just starting to look for specialists in SF.

[Met00 in reply to Johnna707]

I hope they manage to find the cause and are then able to treat that, not just treat the resulting osteoporosis. Why did you have a DEXA scan in the first place, have you had a fracture?

[Johnna707]

Thank you. I had a hysterectomy 8 years ago and did not receive hormone replacement therapy due to endometriosis & risk of breast cancer. My OBGYN was trying to be extra cautious and ordered the scan so we would have a baseline. Hopefully, my insurance company will approve the genetic testing.

[Andrea_Alpaca6]

Hi Joanna. I am also new to this dishonors diagnosis. I'm 55 and feel too young also to have such severe bone density numbers in my spine. I have had four fractures in my spine and cannot have anymore. I'm on Forteo. I'm s single parent and working and very worried about my future I also live in the Bay Area. I'm in Concord.

[Andrea_Alpaca6 in reply to Andrea_Alpaca6]

Excuse my typos. Don't know why the word dishonors is in the sentence.

[notanotter in reply to Andrea_Alpaca6]

Hi Andrea, the autocorrect seems to apply a random dictionary for every post I make on this site. I guess it’s my phone OS but I find more odd typos here for some reason. LOL I kind of like the dishonors typo.

[notanotter in reply to Andrea_Alpaca6]

Me too. I did too much sitting while driving to work long distances and then sitting in front of a computer.

[Johnna707]

Hi Andrea. My goodness, that's terrible. It seems to be the worst in my spine and I'm trying to be extra careful, though if I'm understanding this disease correctly, fractures can happen at anytime and don't necessarily need to be precipitated by a fall. How old were you when you were diagnosed?

No worries about the typos--happens to me all the time

[Andrea_Alpaca6 in reply to Johnna707]

I was diagnosed just a few months ago. I'm 55.

[Andrea_Alpaca6 in reply to Andrea_Alpaca6]

I've always been very active doing martial arts and ballroom dancing. With Covid going on I didn't do as much. I think that was my downfall. I was surprised to hear I have severe osteoporosis.

[joannge in reply to Andrea_Alpaca6]

I'm 56 and just diagnosed, -3.1 T. Very confused and overwhelmed. Having more bloodwork and urine tested. Checking parathyroids too.

[Oscarbuddy]

Just some comments to get to other possible contributors to low bone density: See if your provider or wherever you had the DEXA scan can use the data to determine your TBS or trabecular bone score. This is a better measurement of your bone strength, not just bone density. Also, there are bone markers that can help determine your rate of bone loss. They are blood tests, CTx-C terminal telopeptide (bone marker for bone loss), and P1NP-procollagen type 1N terminal peptide (bone marker for bone building). Both are fasting blood tests. My other recommendation would be to have a thyroid workup (not just TSH, but T4, T3, reverse T3, and thyroid antibodies), parathyroid hormone (PTH), and get tested for celiac disease. All can be determined through blood work. In terms of careful exercise, I haven't tried this yet, but it is on my list: therapilates.com/. This is an exercise program by Dr. Sherri Betz. She is a physical therapist that specializes in osteoporosis. Also, I recommend listening to the Bonecoach podcast.

Stay positive! You are young and can overcome this! Your bone loss may be accelerated due to the hysterectomy. It may level off and with proper diet/exercise and the Forteo for the short term, you can manage this. Take care and best wishes to you.

[notanotter]

I feel you sister. It’s shocking, especially when you were so active with weight bearing exercise! But the Forteo will build bone. If you had a hysterectomy and did not have HRT, it at least explains the loss. I’m glad you discovered the status now so you have a chance to stop losing more bone. And to build some more!

[notanotter]

Good luck with the X-rays (or “crays” as autocorrect tried to replace).

For hiking, ask your doctor but I would still go, but use walking poles to help ensure I didn’t turn my ankle or fall off a slight edge. The pole can actually add to your workout 🏋️‍♀️.

[bonewarrior]

Hey Johnna (typo there?), I just joined and read your post from two years ago and was wondering if you still look at this and how you are doing two years later. Hope your condition has improved!