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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@sennertd

High PTH is caused by your parathyroid gland releasing too much PTH. PTH and calcium work together to keep each other in balance. If the PTH is high, the calcium should be very low. Or vice versa. If both are high or even at the high normal, you need to get it checked out. You should get the both the PTH and calcium tested in the same blood draw. Sometimes if the Vit D is low, it will cause the calcium to be high. My calcium ranged from 9.9 – 11.2 over 5 years before I was diagnosed with Hyperparathyroidism. They didn't check my PTH until my calcium was finally flagged as high. The only "cure" for this is to have the parathyroid gland removed that has the adenoma (tumor) on it. You need a surgeon who performs at least 50 of these a year as it is highly specialized. There are many symptoms of Hyperparathyroidism but most can be blamed on something else. I had about half of them. I went to Mayo in Rochester for final diagnosis, surgery consult and surgery. I was VERY happy with the drs and treatment. They ran all the necessary tests within 24 hours that confirmed the diagnosis. They range from blood tests, 24 hour urine, bone density scan and a nuclear scan. It was an outpatient surgery. I was in the hospital for 6 hours total. They removed one adenoma. They use interoperative PTH testing and that is how they know that the correct parathyroid gland was removed. A person has 4 glands and they can all be affected. They have to leave 1/2 of one. In my case, my PTH dropped from 77 to 15 so they knew the one gland that showed up on the nuclear scan was the only one. I started to feel better immediately, my symptoms all went away within a week. I was lucky because I had very limited bone density loss and when I get it rechecked, they feel it will be normal again. I also did not have any kidney stones which are very common with this disease. Good luck.

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I am getting frustrated with my doctor, have had slighly high calcium levels for years off and on, finally checked pth and it is high and has been for awhile, looked at one other time it was checked back in 2005, yep 2005 and it was high then but ignored. Doctor now checked bone density in knees and says it good but D3 is low so now i will be taking 50000 units once a week and 2000 units once a day for 3 months. My calcium is 10 right now, down from 11.3 so he says that is normal so no problem. Yep I feel awful and have been having erratic high blood pressure that doesn't respond to meds for very long….oh when he did a scan in his office like ones they do on pg ladies it showed thyroid or parathyroid nodules….

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@dianechapman

I am getting frustrated with my doctor, have had slighly high calcium levels for years off and on, finally checked pth and it is high and has been for awhile, looked at one other time it was checked back in 2005, yep 2005 and it was high then but ignored. Doctor now checked bone density in knees and says it good but D3 is low so now i will be taking 50000 units once a week and 2000 units once a day for 3 months. My calcium is 10 right now, down from 11.3 so he says that is normal so no problem. Yep I feel awful and have been having erratic high blood pressure that doesn't respond to meds for very long….oh when he did a scan in his office like ones they do on pg ladies it showed thyroid or parathyroid nodules….

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@dianechapman My elderly mom had similar numbers for blood calcium scores and parathyroid problem caused by a tumor that went on for a few years. She had surgery and a blood test during surgery to confirm they were removing the correct one of the 4 parathyroid glands in her case. Her calcium levels returned to normal after that, but it caused thinning of her bones and a week after the surgery, she fell and broke her pelvis, her foot and her ankle, and spent 3 months in a rehab facility. You might want to get another opinion with a specialist in parathyroid issues. Another thing about calcium supplements according to my doctor is that it should be balanced with vitamin K2. I take K2D3 from Orthomolecular. You can also get K2 in your diet, but it is needed so you don't deposit the calcium in your blood vessels.

Here are some links that may be of interest regarding this type of parathyroid surgery and hypercalcemia (high blood calcium)
https://www.mayoclinic.org/medical-professionals/endocrinology/news/a-missed-parathyroid-adenoma-a-case-from-the-endocrine-teaching-clinics/mcc-20422649
https://www.mayoclinic.org/medical-professionals/endocrinology/news/role-of-focused-parathyroidectomy/mac-20431037
https://www.mayoclinic.org/departments-centers/endocrine-surgery/sections/tests-procedures/orc-20472056
Thyroid nodules can be benign, but should be checked out. I have multiple nodules with Hashimoto's Thyroiditis. I have had a needle biopsy of my thyroid to rule out cancer, and my nodules have reduced in size over a few years. I had all my silver dental amalgam fillings removed which according to my doctor were leaching mercury and impacting my thyroid, and after removal, the blood tests that measure the level of antibodies that I have against my thyroid dropped dramatically. I also take Naturethroid which is desiccated pig thyroid hormones which have all the components the body needs. Some patients cannot convert the components in the synthetic thyroid medicines such as Levothyroxin.
https://newsnetwork.mayoclinic.org/discussion/what-is-hashimotos-disease/
https://www.mayoclinic.org/diseases-conditions/hashimotos-disease/symptoms-causes/syc-20351855

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@jenniferhunter

@dianechapman My elderly mom had similar numbers for blood calcium scores and parathyroid problem caused by a tumor that went on for a few years. She had surgery and a blood test during surgery to confirm they were removing the correct one of the 4 parathyroid glands in her case. Her calcium levels returned to normal after that, but it caused thinning of her bones and a week after the surgery, she fell and broke her pelvis, her foot and her ankle, and spent 3 months in a rehab facility. You might want to get another opinion with a specialist in parathyroid issues. Another thing about calcium supplements according to my doctor is that it should be balanced with vitamin K2. I take K2D3 from Orthomolecular. You can also get K2 in your diet, but it is needed so you don't deposit the calcium in your blood vessels.

Here are some links that may be of interest regarding this type of parathyroid surgery and hypercalcemia (high blood calcium)
https://www.mayoclinic.org/medical-professionals/endocrinology/news/a-missed-parathyroid-adenoma-a-case-from-the-endocrine-teaching-clinics/mcc-20422649
https://www.mayoclinic.org/medical-professionals/endocrinology/news/role-of-focused-parathyroidectomy/mac-20431037
https://www.mayoclinic.org/departments-centers/endocrine-surgery/sections/tests-procedures/orc-20472056
Thyroid nodules can be benign, but should be checked out. I have multiple nodules with Hashimoto's Thyroiditis. I have had a needle biopsy of my thyroid to rule out cancer, and my nodules have reduced in size over a few years. I had all my silver dental amalgam fillings removed which according to my doctor were leaching mercury and impacting my thyroid, and after removal, the blood tests that measure the level of antibodies that I have against my thyroid dropped dramatically. I also take Naturethroid which is desiccated pig thyroid hormones which have all the components the body needs. Some patients cannot convert the components in the synthetic thyroid medicines such as Levothyroxin.
https://newsnetwork.mayoclinic.org/discussion/what-is-hashimotos-disease/
https://www.mayoclinic.org/diseases-conditions/hashimotos-disease/symptoms-causes/syc-20351855

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my calcium was 11.3 and pth was 79 in oct but now it was calcium 10 and pth 82…he did order some scan that will be done in couple of weeks, not sure what it is but do know they will inject soemthing in morning and then have to go back for a scan in the afternoon, thank yu for the links i will read them, I am a week short of my 68th birthday and have spent the last 3 years feeling terrible and fighting a up and down blood pressure, tried lots of meds that made things worse…not a fun couple of years for sure

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A great site I found very informative is.
parathyroid.com

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@hopeful33250

Hello @crankyyankee

I would like to welcome you to Mayo Connect. I found your story about normocalcemic hyperparathyroidism to be very interesting as it parallels a lot of my problems with elevated PTH, (sometimes) elevated calcium levels (sometimes) and continual low bone mass despite treatment with meds. My D3 is below normal and just doesn't go up no matter how much Vit D3 supplements that I take.

While I had never heard of normocalcemic hyperparathyroidism, I did a little investigation online and found this information from the National Institute of Health. I found it very interesting and I thought that you would as well. Here is the link, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3564219/.

This seems to be a relatively new diagnosis in that it does not fit the primary hyperparathyroidism.

I would certainly be interested in hearing how you are following up on this matter. Will you post again?

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Are you taking Vit K2 with the Vit D3?

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@gay

Are you taking Vit K2 with the Vit D3?

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@gay, do you have elevated PTH? How do you manage it?

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I can't relate to your young age and issues because I haven't experienced them and our bodies do not all work the same at every age. But I feel you are not getting the right advice and treatment for you because one size does not fit all in the medical world. My number one advice in general is that if you don't have the wrong food in your home, you can't eat the wrong food! If you don't go to fast food stores, you will eliminate some eating problems. Taking lots of pills is for sick people and it is not the best regimen for type 2 diabetics in the beginning who are successful at losing excess weight, because you rely on the pills for good health instead of diet and exercise which should be your first attack on the problem. Then perhaps you have an undiagnosed health issue which is affecting your results, or too much stress in your life which can elevate blood sugar levels. Pain meds do elevate blood sugar as well. Nutritionists and endocrinologists are your best source of advice and we can be your supporters and cheer leaders for progress to better health. Dorisena

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@colleenyoung

@gay, do you have elevated PTH? How do you manage it?

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I am not @gay, but I have had three blood tests in 2020, each with elevated parathyroid and normal calcium. In fact, never had abnormal calcium. Wondering if I should have more testing re parathyroid. I have small thyroid nodule, longstanding and not an issue.

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My wife has had high calcium and PTH for years. Her Dr. here in Milwaukee has just watched it. She's had almost all the bad symptoms. So this year he ordered a sestimibi scan which showed 1 tumor in her parathyroid glands and a thyroid nodule. The surgeon here we talked to was only going to check the 1 bad gland. I found out about Norman parathyroid Center in Tampa Fl online. That's all they do there is parathyroid surgeries. They have done over 30K surgeries there. No student Dr.s only highly skilled Dr.s on this team. I told my wife, if i have to drag you onto an airplane your going here. This place checks all 4 parathyroids and thyroid during your typical 1/2 day surgery. We made the appointment and flew down to Tampa. Planes are only 1/2 full. She got a covid test that came back neg. We arrived on the surgery day at 6am, the surgeon called me after and said they removed 3 tumors and not 1 like our Dr. said in Milwaukee. The scans are not accurate and that's why you need all 4 glands tested. Now my wife is cured of this terrible disease. Her bones can now start to rebuild. NO TUBE down your throat only an IV knock out juice to sedate you. 1.1" scar close with a bandaid. My wife had 3 parathyroids removed and there was no thyroid nodule. We were back in our hotel at 12:30pm same day, no hospital stay required. These guys have this surgery down to a T and are experts.
My wifes PTH was 154 and now after surgery it's 15.4. This place charges for an initial consultation but since covid hit most insurance companies pay it for you. Another thing to ask is how many of these surgeries have you done? There are nerves that can be cut if they don't do these that often. This is a very mild operation when done by these guys! 1/2 day and your good to go. I'm sorry we waited so long to go here. My wife now can eat whatever she wants to, no restrictions. Don't take a wait and see approach to this because it's destroying you bones. Now my wife said she's happy she went after telling me she didn't want to go.

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@riflemanz64

My wife has had high calcium and PTH for years. Her Dr. here in Milwaukee has just watched it. She's had almost all the bad symptoms. So this year he ordered a sestimibi scan which showed 1 tumor in her parathyroid glands and a thyroid nodule. The surgeon here we talked to was only going to check the 1 bad gland. I found out about Norman parathyroid Center in Tampa Fl online. That's all they do there is parathyroid surgeries. They have done over 30K surgeries there. No student Dr.s only highly skilled Dr.s on this team. I told my wife, if i have to drag you onto an airplane your going here. This place checks all 4 parathyroids and thyroid during your typical 1/2 day surgery. We made the appointment and flew down to Tampa. Planes are only 1/2 full. She got a covid test that came back neg. We arrived on the surgery day at 6am, the surgeon called me after and said they removed 3 tumors and not 1 like our Dr. said in Milwaukee. The scans are not accurate and that's why you need all 4 glands tested. Now my wife is cured of this terrible disease. Her bones can now start to rebuild. NO TUBE down your throat only an IV knock out juice to sedate you. 1.1" scar close with a bandaid. My wife had 3 parathyroids removed and there was no thyroid nodule. We were back in our hotel at 12:30pm same day, no hospital stay required. These guys have this surgery down to a T and are experts.
My wifes PTH was 154 and now after surgery it's 15.4. This place charges for an initial consultation but since covid hit most insurance companies pay it for you. Another thing to ask is how many of these surgeries have you done? There are nerves that can be cut if they don't do these that often. This is a very mild operation when done by these guys! 1/2 day and your good to go. I'm sorry we waited so long to go here. My wife now can eat whatever she wants to, no restrictions. Don't take a wait and see approach to this because it's destroying you bones. Now my wife said she's happy she went after telling me she didn't want to go.

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@riflemanz64 My elderly mom had this parathyroid problem too and it took the calcium out of her bones. 2 weeks after she had the parathyroid surgery to remove the bad gland, she fell and broke her pelvis, ankle, and foot. Then it was a long recovery in a rehab center and her ankle twisted from the injury. That lead to another surgery to cut and lengthen the Achilles tendon because she could not stand on her foot. There are unintended consequences when problems go on too long without intervention. You do have to find the right specialist and advocate for yourself. I'm glad your wife had a good outcome. It's important to share this kind of information. The recovery from the parathyroid surgery was easy and it made a big difference for my mom, but not soon enough for her bone density.

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@jenniferhunter

@riflemanz64 My elderly mom had this parathyroid problem too and it took the calcium out of her bones. 2 weeks after she had the parathyroid surgery to remove the bad gland, she fell and broke her pelvis, ankle, and foot. Then it was a long recovery in a rehab center and her ankle twisted from the injury. That lead to another surgery to cut and lengthen the Achilles tendon because she could not stand on her foot. There are unintended consequences when problems go on too long without intervention. You do have to find the right specialist and advocate for yourself. I'm glad your wife had a good outcome. It's important to share this kind of information. The recovery from the parathyroid surgery was easy and it made a big difference for my mom, but not soon enough for her bone density.

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I hope your mom is doing better after all the falls. They started my wife on calcium pills w vit d 15 min after the surgery was done. 5 pills a day for the first week, 3 pills for the second week, 2 pills after that plus a centrum silver vitamin. She also takes 800 mg magnesium while on the heavy dose of calcium. Boniva does nothing for you when you have a tumor. The pth is too powerful to overcome. Her next bone scan will be in 1 1/2 yrs. Her calcium and pth will be checked in 6 weeks.

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My wife just passed the 5 month post surgery and her PTH was 21 and her calcium was 9.8
She’s very happy to be cured of this disease.

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