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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@hopeful33250

That is very good to hear, @anncgrl. Yes, I am in the U.S. and within driving distance of the University of Michigan, Cleveland Clinic, and a plane ride to Mayo Clinic. So, I've got some good choices. I would probably be considered high risk because I have a paralyzed vocal cord which puts me at risk if the other vocal cord is harmed during the surgery, so I will seek out a very, very experienced surgeon who is willing to take it on.

Yes, I've endured the symptoms for a long time and persisted in seeking an answer. It appears like the answer is around the corner now.

I appreciate the encouragement you offered to me and others!

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I have all confidence, given the many resources in your area, that you will find an able physician and have success! I am not sure if you are high risk because of the vocal cord. I believe there is plenty of space in between. I am certain you will soon have an answer. Go forth and fight the good fight!

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@hopeful33250

That is very good to hear, @anncgrl. Yes, I am in the U.S. and within driving distance of the University of Michigan, Cleveland Clinic, and a plane ride to Mayo Clinic. So, I've got some good choices. I would probably be considered high risk because I have a paralyzed vocal cord which puts me at risk if the other vocal cord is harmed during the surgery, so I will seek out a very, very experienced surgeon who is willing to take it on.

Yes, I've endured the symptoms for a long time and persisted in seeking an answer. It appears like the answer is around the corner now.

I appreciate the encouragement you offered to me and others!

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My wife had her surgery at the Norman parathyroid center in Tampa FL. She had 2 surgeons in on her surgery, one was Dr. Mitchell who came from the Cleveland clinic and Dr. Parruck. If you have abnormal PTH it's leaching the calcium out of the bones. Don't wait too long. Good Luck!

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@riflemanz64

My wife had her surgery at the Norman parathyroid center in Tampa FL. She had 2 surgeons in on her surgery, one was Dr. Mitchell who came from the Cleveland clinic and Dr. Parruck. If you have abnormal PTH it's leaching the calcium out of the bones. Don't wait too long. Good Luck!

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Thanks to you both @anncgrl and @riflemanz64 for your encouraging words. I'm looking forward to getting this taken care of!

Do either of you mind sharing the age at the time of surgery?

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I was around 60. I am 69 now.

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Neither my PTH nor my serum calcium is elevated. But, my 24 hour urine calcium remains above normal, at 339. My serum calcium has been as high as 10 and I had my first kidney stone this year at the age of 73. I have a long list of hyperparathyroid symptoms. The most distressing are insomnia (4-5 hours sleep nightly), very noticeable hair loss in front and upper sides of scalp, and nausea for 2-3 hours every morning. I am having trouble getting this diagnosed since only my urine calcium is high. I would like to have the focused parathyroidectomy that I know Mayo in Rochester has. I live in Florida & don’t know if the Mayo Clinic here offers it.

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@mayruth

Neither my PTH nor my serum calcium is elevated. But, my 24 hour urine calcium remains above normal, at 339. My serum calcium has been as high as 10 and I had my first kidney stone this year at the age of 73. I have a long list of hyperparathyroid symptoms. The most distressing are insomnia (4-5 hours sleep nightly), very noticeable hair loss in front and upper sides of scalp, and nausea for 2-3 hours every morning. I am having trouble getting this diagnosed since only my urine calcium is high. I would like to have the focused parathyroidectomy that I know Mayo in Rochester has. I live in Florida & don’t know if the Mayo Clinic here offers it.

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I read in a older text (c1968) that 24 hour urine calcium tests (to rule in or out calcium metabolism disorders) are preferably collected after a calcium-free diet for 3 days. I’ve been wondering if this is still a current recommendation or not(?).

I have also read the time of day serum tests for parathyroid hormone are performed makes a difference. Late evenings as I recall reading give you the highest level of the day. - Has anyone had experience with this?

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@mayruth

Neither my PTH nor my serum calcium is elevated. But, my 24 hour urine calcium remains above normal, at 339. My serum calcium has been as high as 10 and I had my first kidney stone this year at the age of 73. I have a long list of hyperparathyroid symptoms. The most distressing are insomnia (4-5 hours sleep nightly), very noticeable hair loss in front and upper sides of scalp, and nausea for 2-3 hours every morning. I am having trouble getting this diagnosed since only my urine calcium is high. I would like to have the focused parathyroidectomy that I know Mayo in Rochester has. I live in Florida & don’t know if the Mayo Clinic here offers it.

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I believe the body secretes PTH around 2 to 4 AM. And, labs are usually not open after around 3 PM. My PTH is always normal. They put more reliance now on serum calcium, ionized calcium and PTH and much less on urine calcium. I don’t know if my urine calcium is higher just because my kidneys work well now and remove most calcium from my blood.

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@mayruth

I believe the body secretes PTH around 2 to 4 AM. And, labs are usually not open after around 3 PM. My PTH is always normal. They put more reliance now on serum calcium, ionized calcium and PTH and much less on urine calcium. I don’t know if my urine calcium is higher just because my kidneys work well now and remove most calcium from my blood.

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Hello @mayruth and welcome to Mayo Clinic Connect.

I can certainly understand your confusion and also why you want to treat this problem so that you have relief from the symptoms that bother you.

I'm wondering what type of doctor is following this problem? If you are not currently seeing an endocrinologist, this would be a good specialist for a second opinion.

Have you had a CT scan of the neck? This test can show an adenoma on the parathyroid.

I look forward to hearing from you again. Will you post an update?

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@hopeful33250

Hello @mayruth and welcome to Mayo Clinic Connect.

I can certainly understand your confusion and also why you want to treat this problem so that you have relief from the symptoms that bother you.

I'm wondering what type of doctor is following this problem? If you are not currently seeing an endocrinologist, this would be a good specialist for a second opinion.

Have you had a CT scan of the neck? This test can show an adenoma on the parathyroid.

I look forward to hearing from you again. Will you post an update?

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I have been seeing a nephrologist at Mayo Clinic because of the kidney stone. She was reluctant to refer me to Endocrinology at Mayo. I am trying to get an appointment with the endocrinology department of Mayo Clinic by self referral. I was previously told by Norman Parathyroid Clinic in Tampa, and by Parathyroid Atlanta that they would not accept me as a patient due to my serum calcium, ionized calcium, and PTH levels were too low.
I have not had a CT of the neck, but believe I should have a Parathyroid 4D-CT done.

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