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???

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@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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This is incredibly important information. Also, what kind of doctor do you have treating this condition, and what exact tests does one take to get to the bottom of this? I had a scan however my Internist said it looked normal, but my labs are anything but normal, and continue to get worse. The calcium continues to rise, and I am thinking it is also causing many other issues. I just dont understand. How does something like this happen, and why are doctors so quick to drop the issue, when the labs show something wrong?

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@michaellavacot

Hi @closetmonster93 - Hypercalcemia with osteoporosis screams primary hyperparathyroidism. While there are other causes you need to check out, the odds are here.

I put together a video segment on hyperparathyroidism based on Dr. John Bilezikian, who is a top osteoporosis doctor. You can watch the segment here https://youtu.be/xKNdqISXkFY?si=80l-T3gQ7iDvVxMw&t=2205 . The entire video should be helpful but this link is to the segment on hyperparathyroidism.

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Thank you, I will utilize this information.

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@closetmonster93

Thank you, I will utilize this information.

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One more thing. If your 25(OH)D is over 50ng/mL, there is a risk of hypercalciuria and hypercalcemia. It's also not good for bones. Some people take way too much Vitamin D as a supplement. Good luck!

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@closetmonster93

This is incredibly important information. Also, what kind of doctor do you have treating this condition, and what exact tests does one take to get to the bottom of this? I had a scan however my Internist said it looked normal, but my labs are anything but normal, and continue to get worse. The calcium continues to rise, and I am thinking it is also causing many other issues. I just dont understand. How does something like this happen, and why are doctors so quick to drop the issue, when the labs show something wrong?

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As of this writing, I have not met with an endocrinologist. I am scheduled to meet with this specialist mid April 2024.

Did you ask your Internist if he/she could see all 4 glands? Who read the scan? How old is the scanning machine that did the scan? These are fair and important questions. Some doctors do not like being X-examined and that's a problem for them not you. You R UR own best advocate.

Did you watch the Youtube.com video I mentioned? If so, ask your physician if he/she has seen it. If the physician seems disinterested & you have a PPO that allows you to make an appointment with an endocrinologist, then do it for your own peace of mind.

Be sure to check in with your insurance to make sure they allow a second opinion, & that U can make the appt with the endocrinologist. If your insurance carrier wants to know why, then tell them.

I am not afraid to buck anyone whose responses are concerning.

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@csjxvcsjxv

Well, mine tested November 2024 was 113, before then June 84, February 103, October 2023 74, and May 2023 it was 90. I am wondering if I should see an endocrinologist as my primary does not seem to think it is an issue??? As you said yours was in the 80's and it was an issue for you.

I currently have osteopenia, and I refuse to take any of the bone pharmaceuticals as most all make your bones brittle. I believe Tymlos may be different as it is an anabolic so it is supposed to build bone. My gynecologist prescribed testosterone cream as it increases bone formation by increasing the formation of osteoblasts which are the bone builders. Perhaps you could inquire about that method.

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You need to see an endocrinologist as soon as possible. Hyperparathyroidism does it's damage slowly and silently and will continue to leach calcium from your bones until the condition is treated with a simple surgery. Hyperparathyroidism is also a major risk factor impaired cognitive function and dementia.

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@margiemateer

You need to see an endocrinologist as soon as possible. Hyperparathyroidism does it's damage slowly and silently and will continue to leach calcium from your bones until the condition is treated with a simple surgery. Hyperparathyroidism is also a major risk factor impaired cognitive function and dementia.

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Thank you. I have an appointment in February in Tampa/FSU

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@csjxvcsjxv

Thank you. I have an appointment in February in Tampa/FSU

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Hello @csjxvcsjxv

Have you had an ultrasound or CT of the neck to check on the parathyroid gland? If not, when you see the endocrinologist, you should ask about one of these tests.

I look forward to hearing from you after your appointment. If you have any other questions in the meantime, please post them. Many of us in this discussion group have both hyperparathyroidism and osteoporosis.

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@hopeful33250

Hello @csjxvcsjxv

Have you had an ultrasound or CT of the neck to check on the parathyroid gland? If not, when you see the endocrinologist, you should ask about one of these tests.

I look forward to hearing from you after your appointment. If you have any other questions in the meantime, please post them. Many of us in this discussion group have both hyperparathyroidism and osteoporosis.

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I did have one earlier this year which indicated secondary hyperparathyroidism. Likely cause I only have one kidney received as a deceased donor transplant 2 years ago. I have osteopenia. Am wondering if Endo can do anything about the Secondary PTH.

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@csjxvcsjxv

I did have one earlier this year which indicated secondary hyperparathyroidism. Likely cause I only have one kidney received as a deceased donor transplant 2 years ago. I have osteopenia. Am wondering if Endo can do anything about the Secondary PTH.

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@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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@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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Thank you for asking. I feel great. I lift weights 3xweek and walk minimum 1 mile a day, which helps keep my bones strong and my dexa is pretty much stable from 2 years ago. Spine BMD increased a bit so is no long in osteopenia range. Risk of major fracture in next 10 yrs is 10%. Risk of hip fracture 2.5%. I am 73 years old, 5 foot tall and weight 94 lbs, but can deadlift 150 lb. and carry 75% of by bodyweight for 1 minute farmer carry. I attribute the weight training to the stability of my BMD numbers. I take 4000 units vitamin D a day, plus Vitamin k, and get enough calcium from diet.

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