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.

Interested in more discussions like this? Go to the Diabetes & Endocrine System group.

Has anyone had parathyroid surgery at Mayo in Minnesota. Can you recommend a surgeon there?

REPLY

Hi @mayojulia and welcome to Connect. If you would like to make an appointment at Mayo Clinic, please call one of our appointment offices. You can also request an appointment online. The contact information for Minnesota, Arizona and Florida can be found here: http://www.mayoclinic.org/appointments

I'd also like to introduce you to fellow Connect members @hopeful33250 @crankyyankee and @ladybugmg as they have experience with parathyroid problems and may be able to offer support for you.

I also wanted to connect you with fellow member @cindyt63 as she has had parathyroid surgery done, although not at Mayo, and may be able to answer questions you have about her experience with the surgery.

Back to you @mayojulia, for what reason are you looking into parathyroid surgery?

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@mayojulia

Has anyone had parathyroid surgery at Mayo in Minnesota. Can you recommend a surgeon there?

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Hello @mayojulia

I would like to join Ethan, @ethanmcconkey, in welcoming you to Connect. I'm glad that you joined this discussion on the parathyroid. I have heard that Mayo is an excellent place for parathyroid surgery, although I have not had surgery at this point.

Here is a video about parathyroid treatment at Mayo, just click on the link to view it,
https://www.mayoclinic.org/diseases-conditions/hyperparathyroidism/multimedia/patient-experience-parathyroid-video/vid-20143231?_ga=2.195734316.1063488962.1549286923-1221957091.1534862430
I have had elevated parathyroid hormones for many years, as well as increased calcium levels in the blood and a very low Vit D level. As a result, I do have osteopenia, in the hip (so I'm very cautious when I'm outside in slippery weather).

In addition, to bone thinning (osteoporosis or osteopenia) elevated parathyroid hormones can also result in kidney stones and other uncomfortable symptoms like bone pain, etc. If you read the many posts in the discussion here, you will have more of an understanding of what is experienced by this problem.

As Ethan said, I would be interested in knowing why you are interested in parathyroid surgery. Is it for you or a family member? Please feel free to share only as you are comfortable doing so.

I'm looking forward to hearing from you. Will you post again?

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@mayojulia

Has anyone had parathyroid surgery at Mayo in Minnesota. Can you recommend a surgeon there?

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I had surgery at Mayo in Minnesota a year ago. Dr. Dy was my surgeon. I would recommend him.

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@sennertd

I had surgery at Mayo in Minnesota a year ago. Dr. Dy was my surgeon. I would recommend him.

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Thanks for your recommendation. I’m a doctor thinking of flying to mayo from Florida for parathyroidectomy but I wanted an attending surgeon with experience to do the surgery not a resident surgeon in training . Do you have Dr Dy? Full name ? Do you know the name of other endocrine surgeons at Mayo ? Thanks very much.

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@mayojulia

Thanks for your recommendation. I’m a doctor thinking of flying to mayo from Florida for parathyroidectomy but I wanted an attending surgeon with experience to do the surgery not a resident surgeon in training . Do you have Dr Dy? Full name ? Do you know the name of other endocrine surgeons at Mayo ? Thanks very much.

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@hopeful33250

Hi dear volunteer mentor : I’m a physician rheumatologist from Miami Florida diagnosed with hyperparathyroidism, I’m looking for a surgeon with the most experience in this surgery . Could you provide me with the information as to how many parathyroidectomies have each doctor: Dr Dy, dr Leyden and Dr McKenzie performed? I would really appreciate that information. Thanking you very much in advance. Julia.

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@mayojulia

Hi dear volunteer mentor : I’m a physician rheumatologist from Miami Florida diagnosed with hyperparathyroidism, I’m looking for a surgeon with the most experience in this surgery . Could you provide me with the information as to how many parathyroidectomies have each doctor: Dr Dy, dr Leyden and Dr McKenzie performed? I would really appreciate that information. Thanking you very much in advance. Julia.

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Dr. Benzon Dy has only been at Mayo about 1.5 years. He did his residency and fellowship there and trained under a top surgeon, Dr. Thompson, at Mayo. He then had a practice out east. He was fairly new to Mayo when he was assigned to do my surgery and I was pretty nervous about it as I also wanted a very experienced surgeon. My endo at Mayo was Dr. Bart Clarke and he highly recommended him. He said that Dr. Thompson would be retiring and Dr. Dy was chosen to be his replacement due to the quality of work he did when he was doing his fellowship. The good thing about Mayo is the team approach and they truly will choose the best surgeon for your case. I would recommend Dr. Clarke if you are looking for an Endo. He's in his 60s and very experienced. Both drs had a great bedside manner and I had total trust in them.

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@mayojulia

Hi dear volunteer mentor : I’m a physician rheumatologist from Miami Florida diagnosed with hyperparathyroidism, I’m looking for a surgeon with the most experience in this surgery . Could you provide me with the information as to how many parathyroidectomies have each doctor: Dr Dy, dr Leyden and Dr McKenzie performed? I would really appreciate that information. Thanking you very much in advance. Julia.

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@mayojulia

I can understand you are wanting to know all about a surgeon, however, I do not have that kind of information.

I would suggest that you call Mayo Clinic in Minnesota and ask that question.

Will you post again and let me know how you are doing in your search for a surgeon?

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I have had high PTH and normal Calcium with many, many symptoms and have also been extremely frustrated. I have a referral to Mayo in Rochester and am trying to sort out how to get there and have more testing done. I initially had a PTH level drawn to investigate my symptoms of headache, fatigue, palpitations, etc. and My Calcium was 9.6 with a PTH of 85. My next draw was super odd with a Calcium of 8.8 (not corrrected for Albumin) and a PTH of 109. Then it was all checked again and I had a Vitamin D level of 23. After supplementation it was 29 with a Caclium of 9.5 and a PTH of 76, and then Vitamin D 40, with Calcium 9.4, PTH 76. The Endocrinologist that I have been seeing says that my PTH is now "normal" and that I had secondary HPT, but shouldn't the PTH be much, much lower? My PTH has been tested 5 times and never below 75, but my calcium has never been higher than 9.6. Hoping I can get to Mayo for eval., but I am scared to spend the time and money only to be turned away again! Thanks to everyone for sharing your experiences. It would be nice to hear from more "normal" calcemic patients!

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@megansims

I have had high PTH and normal Calcium with many, many symptoms and have also been extremely frustrated. I have a referral to Mayo in Rochester and am trying to sort out how to get there and have more testing done. I initially had a PTH level drawn to investigate my symptoms of headache, fatigue, palpitations, etc. and My Calcium was 9.6 with a PTH of 85. My next draw was super odd with a Calcium of 8.8 (not corrrected for Albumin) and a PTH of 109. Then it was all checked again and I had a Vitamin D level of 23. After supplementation it was 29 with a Caclium of 9.5 and a PTH of 76, and then Vitamin D 40, with Calcium 9.4, PTH 76. The Endocrinologist that I have been seeing says that my PTH is now "normal" and that I had secondary HPT, but shouldn't the PTH be much, much lower? My PTH has been tested 5 times and never below 75, but my calcium has never been higher than 9.6. Hoping I can get to Mayo for eval., but I am scared to spend the time and money only to be turned away again! Thanks to everyone for sharing your experiences. It would be nice to hear from more "normal" calcemic patients!

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Hello @megansims

I can understand your confusion. My PTH levels and calcium levels have also been up and down. My endocrinologist is on the staff at a large university medical center and she is quite good. She has diagnosed me with hyperparathyroidism even though the levels are inconsistent. I would encourage you to visit Mayo or another research-oriented, multi-disciplinary health center where you can be evaluated.

Do you have any other health problems of significance? Please share only as you are comfortable doing so.

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