Elevated parathyroid hormone (PTH): How is it treated?

Posted by ladybugmg @ladybugmg, Sep 27, 2018

After I had a nonfasting blood test yesterday my doctor tells me that I have elevated PTH. Is anyone else dealing with PTH and if so would appreciate learning about their experience and how it was treated or is untreatable. Thank you for sharing.

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@crankyyankee

I've just received the results of my follow-up tests for intact PTH and blood calcium. The initial tests were done in late November 2018. Calcium continues normal at 9.2 but my PTH decreased from 82 to 59. While 59 is within normal limits, I've read (bless you/curse you, internet) that wonky readings indicate abnormality, not just a one-off high reading. I see my doctor on Tuesday and will post again after that.

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Hello @crankyyankee

We do have a lot in common. My PTH and calcium level goes up and down as well. I do have bone pain but I'm also losing bone mass.

I also have a very low Vit D level, do you have your Vit D level checked periodically? If not that would be a good thing to request at your next appointment.

Here is some information about hyperparathyroidism (high PTH) and if you look at the article there are a number of symptoms listed including bone and joint pain.
https://www.mayoclinic.org/diseases-conditions/hyperparathyroidism/symptoms-causes/syc-20356194
What is the status of your bone mass? Do you have a bone density test done periodically?

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@crankyyankee

Another thing – does anyone else have bone/muscle/joint pain with your elevated PTH? For the last year I've had miscellaneous aches that I can't account for. I'm going to ask the doctor about these, but am curious about personal experience from this group. Thanks in advance.

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Yes, I had severe, debilitating bone pain in my hips mostly. It had gotten so bad that I could barely walk. Once I had my surgery that pain was gone. The surgery did not help with the muscle, tendon and joint pain from fibromyalgia, degenerative disc disease and osteopenia.

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@hopeful33250

Hello @crankyyankee

We do have a lot in common. My PTH and calcium level goes up and down as well. I do have bone pain but I'm also losing bone mass.

I also have a very low Vit D level, do you have your Vit D level checked periodically? If not that would be a good thing to request at your next appointment.

Here is some information about hyperparathyroidism (high PTH) and if you look at the article there are a number of symptoms listed including bone and joint pain.
https://www.mayoclinic.org/diseases-conditions/hyperparathyroidism/symptoms-causes/syc-20356194
What is the status of your bone mass? Do you have a bone density test done periodically?

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My Vitamin D is low normal at 40. I guess your doctor isn't inclined to recommend a parathyroidectomy. I read (somewhere!) a study in which that surgery helped even patients who did not have consistent hyperparathyroidism. I'm going to see if I can find that again and will post a link.
My bone density has decreased but I'm still only osteopenic, especially in the hip and spine. Here are my numbers:
Femoral Neck: BMD 0.612 g/cm2. The T-score is -2.1
Total Hip: BMD 0.736 g/cm2. The T-score is -1.7.
Lumbar Spine L1, L4: BMD 0.848 g/cm2. The T-score is -1.7.
Forearm: BMD 0.579 g/cm2. The T-score is -1.8.

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@cindyt63

Yes, I had severe, debilitating bone pain in my hips mostly. It had gotten so bad that I could barely walk. Once I had my surgery that pain was gone. The surgery did not help with the muscle, tendon and joint pain from fibromyalgia, degenerative disc disease and osteopenia.

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@cindyt63 – did your bone density increase after the surgery? Were you taking meds for it previously? I'm pretty uneasy about taking bisphosphonates Fosamax, etc. I know about those "small risks" from certain medications. My husband took a fluoroquinolone (Cipro) and was the rare statistic: his Achilles tendon snapped and really altered his physical health greatly.

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@crankyyankee

My Vitamin D is low normal at 40. I guess your doctor isn't inclined to recommend a parathyroidectomy. I read (somewhere!) a study in which that surgery helped even patients who did not have consistent hyperparathyroidism. I'm going to see if I can find that again and will post a link.
My bone density has decreased but I'm still only osteopenic, especially in the hip and spine. Here are my numbers:
Femoral Neck: BMD 0.612 g/cm2. The T-score is -2.1
Total Hip: BMD 0.736 g/cm2. The T-score is -1.7.
Lumbar Spine L1, L4: BMD 0.848 g/cm2. The T-score is -1.7.
Forearm: BMD 0.579 g/cm2. The T-score is -1.8.

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@crankyyankee

My Vit D level is at 17, no matter how much supplements I take. We have talked about the surgery, however, I have one paralyzed vocal cord and the risk of surgery could be having the other vocal cord harmed, which would put me on a trach for the rest of my days – not a good option. My osteopenia is worse in the hip and forearm and OK in the spine.

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@crankyyankee

@cindyt63 – did your bone density increase after the surgery? Were you taking meds for it previously? I'm pretty uneasy about taking bisphosphonates Fosamax, etc. I know about those "small risks" from certain medications. My husband took a fluoroquinolone (Cipro) and was the rare statistic: his Achilles tendon snapped and really altered his physical health greatly.

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I have not had a follow up bone density test yet. I will have one in a few months. I will be interested in seeing if it increases.@ I have been on Fosamax since my diagnosis of osteopenia. I have not had any problems with the Fosamax so far. I generally don't have reactions to medications with the exception of statin drugs and Mobic. I'm sorry to hear about your husband's reaction to Cipro.

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Hi @cindyt63

Would love for you to post an update after your next bone density test.

How are you feeling in general?

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@crankyyankee

@cindyt63 – did your bone density increase after the surgery? Were you taking meds for it previously? I'm pretty uneasy about taking bisphosphonates Fosamax, etc. I know about those "small risks" from certain medications. My husband took a fluoroquinolone (Cipro) and was the rare statistic: his Achilles tendon snapped and really altered his physical health greatly.

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@crankyyankee cipro is scary. My daughter knew someone also who suffered from sever side-effects and was very concerned when I was on it once. Thankfully, I was OK.
I am a fellow yankee, by the way.
JK

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Just back from my appointment. My doctor, who knows me well, said 'sorry to disappoint you but your parathyroid is normal. Every question I asked he answered to my satisfaction, but I'm not sure I could replicate the conversation! Another DEXA in 2 years (I'm 74) and he'll probably retest my PTH in 6 months, but he considers everything normal. The bone pain a year ago was probably a blip he guesses. I'm satisfied, and I'm a tough customer! I'll be lurking on this board though. Always interested in others' experiences.

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@crankyyankee

Just back from my appointment. My doctor, who knows me well, said 'sorry to disappoint you but your parathyroid is normal. Every question I asked he answered to my satisfaction, but I'm not sure I could replicate the conversation! Another DEXA in 2 years (I'm 74) and he'll probably retest my PTH in 6 months, but he considers everything normal. The bone pain a year ago was probably a blip he guesses. I'm satisfied, and I'm a tough customer! I'll be lurking on this board though. Always interested in others' experiences.

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Glad to hear that your appointment went so well and you are comfortable with your doctor's advice. Yes, please keep in touch with this discussion and join in whenever you want to, @crankyyankee .

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could you share why your parathyroid hormone was checked? My doctor only requests a TSH test, is that the same? What's parathyroid? I've been on synthroid since 1997, so 20+ years.

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@Erinmfs

could you share why your parathyroid hormone was checked? My doctor only requests a TSH test, is that the same? What's parathyroid? I've been on synthroid since 1997, so 20+ years.

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Hello @user_chdb5e8ac

Parathyroid is checked if you have symptoms of parathyroid problems, such as bone loss, kidney stones, fractures, etc. The TSH test is a test for the thyroid functioning. While the parathyroid and the the thyroid are located near each other they are separate glands and have different tasks. Here is a Mayo video about the parathyroid, just click on the link,
https://www.mayoclinic.org/diseases-conditions/hyperparathyroidism/multimedia/patient-experience-parathyroid-video/vid-20143231
Here is some written information about hyperparathyroidism,
https://www.mayoclinic.org/diseases-conditions/hyperparathyroidism/symptoms-causes/syc-20356194
I hope this helps in your understanding about the parathyroid. Any other questions?

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