Hyperparathyroidism caused osteoporosis--now what treatment?

Posted by sebutler @sebutler, Dec 24, 2024

I had hyperparathyroidism for 10 years before my doctor noticed (!!), and as a result developed severe osteoporosis. The parathyroid problem has been fixed (with surgery), and I've been on Tymlos for a year, with no side effects, thankfully. My rheumatologist usually keeps patients on Tymlos for 2 years, then moves to Reclast for 3 years. I am terrified of taking any bisphosphanates, since my teeth are really bad and I could possibly need an extraction in the next year or so. Has anyone had osteoporosis due to hyperparathyroidism? I'm wondering if, now that my PTH levels are normal, maybe my body will start developing new bone on its own and stop resorbing bone. So maybe I don't have to go on Reclast???

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

Thank you for this information!!

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Profile picture for firef1y @firef1y

Go on Youtube. There is a mountain of information on the parathyroid glands (4 glands 2 B exact). What I've learned is that if there is a tumor, it may or may not show up on a scan. There was one surgery where only 1 turmor showed on the scan, the 2nd tumor was hiding. It's a 15 minute day surgery with about a 1" incision. I wish this site would allow links bt it doesn't. Go to youtube.com ... ALWAYS BE PREPARED B4 MEETING W/UR DR. WITH ALL SURGERY THERE R RISKS. The vocal chords are very close to the parathyrid glands. This is the video U will want 2 C ... Parathyroid Operation: State of the art Surgery in 13 minutes by NORMAN PARATHYROID CENTER ... Some of the symptoms I've had for years bt those symptoms mimic other possibilities as well. Best blessings on your journey ...

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@firef1y
I had my parathyroid surgery done in 2008 in Tampa by Dr. Norman.

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The clearest information I've found is on Dr. Norman's website. https://www.parathyroid.com/MIRP-Surgery.htm

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Profile picture for SusanEllen66 @SusanEllen66

@firef1y
I had my parathyroid surgery done in 2008 in Tampa by Dr. Norman.

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Are you feeling any different since you had surgery? I've heard others Express how much better they feel overall. Thanks for posting. Happy New Year!!

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Profile picture for SusanEllen66 @SusanEllen66

@firef1y
I had my parathyroid surgery done in 2008 in Tampa by Dr. Norman.

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I just read the attachment. Very interesting and very informative. Thanks again for posting 📫 ☺️

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Profile picture for firef1y @firef1y

Are you feeling any different since you had surgery? I've heard others Express how much better they feel overall. Thanks for posting. Happy New Year!!

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@firef1y I felt light years better 2 days after surgery.

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Ms. Susan, thank you. A blessed New Year to you and all! MJ

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Profile picture for Teresa, Volunteer Mentor @hopeful33250

@csjxvcsjxv
It will be interesting to hear what the endocrinologist has to say about your situation. Being a transplant recipient might change the way your Secondary PTH is treated.

In general, how do you feel?

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Hi, I saw the Endo at USF in December of 2024. Since then, she had me do a couple 25 hour urine tests along with testing Iodized calcium and blood calcium levels. While my blood calcium was in the normal range, the 24 hour calcium urine test was quote low. She prescribed 1200 mg calcium citrate daily. Another test in March showed my pth went from around 113 down to 79 (not quite in the normal range, but better). Another recent test showed pth in the mid 60s in the normal range. So, even though my blood calcium was normal, I was not getting enough. I am so happy i found this doctor at USF to diagnose and correct the problem that I was living with for 10 years, that other doctors did not, but should have.

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I Didn’t know which thread to put this on so sorry if I’m incorrect.
Here’s what I sent to my Endocrinologist and her reply.
I don’t understand it.

“Hello Meridith,

We have checked one of the bone turnover marker COLLAGEN XLINK N TELOPEPTIDE,UR,RANDOM.

Component
Ref Range & Units (hover)
2/9/24 1439
N-Telopeptide
39
Comment: Note

Adult Female Reference Range for Collagen Cross-
Linked N-Telopeptide (NTx), Random Urine

Premenopausal: 4-64 nM BCE/mM creat

Component
Ref Range & Units (hover)
7/2/25 0907
N-Telopeptide
60
Comment: Note

Adult Female Reference Range for Collagen Cross-
Linked N-Telopeptide (NTx), Random Urine

Premenopausal: 4-64 nM BCE/mM creat

Again those bone marker are not for making decision on treatment options. Those are somewhat useful to monitor once you have started on osteoporosis medications.

Best regards, “

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Profile picture for meri8181 @meri8181

I Didn’t know which thread to put this on so sorry if I’m incorrect.
Here’s what I sent to my Endocrinologist and her reply.
I don’t understand it.

“Hello Meridith,

We have checked one of the bone turnover marker COLLAGEN XLINK N TELOPEPTIDE,UR,RANDOM.

Component
Ref Range & Units (hover)
2/9/24 1439
N-Telopeptide
39
Comment: Note

Adult Female Reference Range for Collagen Cross-
Linked N-Telopeptide (NTx), Random Urine

Premenopausal: 4-64 nM BCE/mM creat

Component
Ref Range & Units (hover)
7/2/25 0907
N-Telopeptide
60
Comment: Note

Adult Female Reference Range for Collagen Cross-
Linked N-Telopeptide (NTx), Random Urine

Premenopausal: 4-64 nM BCE/mM creat

Again those bone marker are not for making decision on treatment options. Those are somewhat useful to monitor once you have started on osteoporosis medications.

Best regards, “

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Meri8181,
random means the specimen can be taken any time of day. The test ordered is NTX urine measuring product left in the urine by bone breakdown. The comparable serum level is called CTX.
She would be ordering this to establish a baseline And will measure it again after two to three months of antiresorptive treatment to ascertain that the medication is slowing the breakdown in nanomoles of bone collagen equivalents (BCE)/mM creatine
The normal range for this test is 4-64. You are at 60
The doctor includes a disclaimer, saying that the numbers are not used for making decisions about treatment. Which I assume means that she hasn't ordered with the code for medical necessity and may make it difficult to receive insurance coverage for the test.
Meri, which medication have you decided to take.

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