1. < Diabetes & Endocrine System

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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anncgrl | @anncgrl | Oct 27, 2021
In reply to @riflemanz64 "It's the Norman Parathyroid center in Tampa Florida! My wife had her surgery there at Tampa..." + (show)
@riflemanz64

It's the Norman Parathyroid center in Tampa Florida! My wife had her surgery there at Tampa General Hospital and it was a great time for both of us.

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Awesome!

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mayruth | @mayruth | Oct 28, 2021
In reply to @anncgrl "The date on your post is April so my response may be irrelevant. I had the..." + (show)
@anncgrl

The date on your post is April so my response may be irrelevant. I had the surgery several years ago. It was outpatient, over quickly with very little discomfort. In my case the surgeon took all of my parathyroids. Every negative symptom related to parathyroidism vanished in less than 48 hours. It is suggested to search for a doctor who has done that specific surgery a number of times. Several years down the road and my calcium level, bone density, etc. are a bit off. In my case the surgery had to happen. My symptoms were impacting my daily life far too much.
There is a medical facility in Florida that specializes in parathyroid removal. I will find the name and post it here.

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That is called Norman Parathyroid Center in Tampa

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1 reply
mayruth | @mayruth | Oct 28, 2021
In reply to @mayruth "That is called Norman Parathyroid Center in Tampa" + (show)
@mayruth

That is called Norman Parathyroid Center in Tampa

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I finally had the 4D-CT scan. It was negative for PTH adenomas. However, they did not even mention seeing normal PTH glands, so I wonder how good the scan was. They say it is “very accurate”. However, though this scan has a high Specificity, meaning it identifies the gland for what it really is, it has a much lower Sensitivity - 44%. So, it shows the adenomas only 44% of the time. So, I am still wondering if there is or are adenomas there. (I am a nurse practitioner). My symptoms are debilitating … 3-4 hours of daily morning nausea, frequent urination, constipation, loss of hair so that I am buying a wig because so embarrassing, history of kidney stone this year. I worry that I will get kidney damage with another stone. I do not have elevated serum or ionized calcium or elevated PTH. Though my 24 hour urine calciums are always high, this does not seem to matter to them. I have an appointment with a Mayo endocrinologist in 3 weeks. I hope that will turn up something. I may try to get a Dexa scan to check for osteoporosis or osteopenia. My last was summer 2020 & was completely normal. However, it may not still be normal.

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1 reply
riflemanz64 | @riflemanz64 | Oct 30, 2021

If you PTH and blood calcium are normal I would see a Nephrologist.

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1 reply
mayruth | @mayruth | Oct 31, 2021
In reply to @riflemanz64 "If you PTH and blood calcium are normal I would see a Nephrologist." + (show)
@riflemanz64

If you PTH and blood calcium are normal I would see a Nephrologist.

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I have been seeing a Nephrologist. She had no real input except to rule out multiple myeloma and sarcoidosis. I am trying to see an endocrine surgeon at Mayo in Rochester. Also, I will get a bone density to followup the one I had 15 months ago which was normal. The question is whether it will show a decrease in bone density to indicate a trend toward osteopenia or osteoporosis.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 27, 2022
In reply to @mayruth "I finally had the 4D-CT scan. It was negative for PTH adenomas. However, they did not..." + (show)
@mayruth

I finally had the 4D-CT scan. It was negative for PTH adenomas. However, they did not even mention seeing normal PTH glands, so I wonder how good the scan was. They say it is “very accurate”. However, though this scan has a high Specificity, meaning it identifies the gland for what it really is, it has a much lower Sensitivity - 44%. So, it shows the adenomas only 44% of the time. So, I am still wondering if there is or are adenomas there. (I am a nurse practitioner). My symptoms are debilitating … 3-4 hours of daily morning nausea, frequent urination, constipation, loss of hair so that I am buying a wig because so embarrassing, history of kidney stone this year. I worry that I will get kidney damage with another stone. I do not have elevated serum or ionized calcium or elevated PTH. Though my 24 hour urine calciums are always high, this does not seem to matter to them. I have an appointment with a Mayo endocrinologist in 3 weeks. I hope that will turn up something. I may try to get a Dexa scan to check for osteoporosis or osteopenia. My last was summer 2020 & was completely normal. However, it may not still be normal.

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@mayruth

Given your many symptoms of hyperparathyroidism, you are wise to keep searching for answers. Have you had an ultrasound of the neck?

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plstroud | @plstroud | Feb 28, 2022
In reply to @megansims "I have had high PTH and normal Calcium with many, many symptoms and have also been..." + (show)
@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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I have the same - there is something they have been seeing called normocalcemic primary hyperparathyroidism - there is a article on the NIH site about it. I am just starting the process of meeting with an endocrinologist - I don't have elevated Vitamin D or calcium blood levels but I also have hypertension that seems to jump all over the place (and I run an hour a day) - I am wondering if my hypertension is related to my elevated PTH levels.

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 1, 2022
In reply to @plstroud "I have the same - there is something they have been seeing called normocalcemic primary hyperparathyroidism..." + (show)
@plstroud

I have the same - there is something they have been seeing called normocalcemic primary hyperparathyroidism - there is a article on the NIH site about it. I am just starting the process of meeting with an endocrinologist - I don't have elevated Vitamin D or calcium blood levels but I also have hypertension that seems to jump all over the place (and I run an hour a day) - I am wondering if my hypertension is related to my elevated PTH levels.

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Hello @plstroud and welcome to Mayo Clinic Connect. This information about normocalcemic primary hyperparathyroidism is quite interesting. Do you also have high PTH levels, but normal calcium levels?

As I had not heard of this before I went to the NIH website and found this article. Here is the link, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3564219/.
A number of members on Connect have also spoken about high PTH levels with normal calcium readings. This should be interesting to many of them. I'm wondering if you have any other hyperparathryoidsm symptoms such as bone loss, kidney stones, etc.?

You mentioned having an upcoming appointment with an endocrinologist. Is that appointment coming up soon?

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1 reply
plstroud | @plstroud | Mar 1, 2022
In reply to @hopeful33250 "Hello @plstroud and welcome to Mayo Clinic Connect. This information about normocalcemic primary hyperparathyroidism is quite..." + (show)
@hopeful33250

Hello @plstroud and welcome to Mayo Clinic Connect. This information about normocalcemic primary hyperparathyroidism is quite interesting. Do you also have high PTH levels, but normal calcium levels?

As I had not heard of this before I went to the NIH website and found this article. Here is the link, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3564219/.
A number of members on Connect have also spoken about high PTH levels with normal calcium readings. This should be interesting to many of them. I'm wondering if you have any other hyperparathryoidsm symptoms such as bone loss, kidney stones, etc.?

You mentioned having an upcoming appointment with an endocrinologist. Is that appointment coming up soon?

Jump to this post

My calcium levels and Vitamin D are both smack dab in the middle of normal ranges. My PTH level this last time was 76 but has been higher - 88 - in the past. I had seen an endocrinologist several years ago but he passed the high level off as unimportant since my calcium was in the normal range. I have had kidney stones many years ago but nothing I can confirm lately. We are supposed to perform a bone density test as my NP has said she wants to see if I have suffered any bone loss. My Vitamin D was deficient in the past and I had been taking 2000 iu but upped it to 4000 iu daily during Covid after the initial reports that some doctors said appeared to point to less Covid severity risk for those with good Vitamin D levels. I am now curious to see if I indeed have a tumor. I think I will try a different endocrinologist this time. I just got the latest lab test results within the last week so I'm still digesting all of this to plan my next move. Any help from this forum is appreciated.

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1 reply
ialogic | @ialogic | Apr 5, 2023
In reply to @ladybugmg "The doctor is still experimenting using D2 and now D3 to see if this makes a..." + (show)
@ladybugmg

The doctor is still experimenting using D2 and now D3 to see if this makes a difference. The D is now up to 27 and we are hoping for at least 30, the absolute minimum. My calcium is still a little high. I wonder if fatigue is associated with PTH.

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Your doctor is clueless putting you on vitamin d with high calcium. You are putting yourself at risk. Consult with an endocrinologist or endocrine surgeon or visit parathyroid.com

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