1. < Diabetes & Endocrine System

Worrying About My Hyperparathyroidism

Posted by dave9136 @dave9136, Apr 21, 2020

Hi All... I've taken 4 PTH tests over the last 9 months and each test level has been higher than the last. The first test level was 87 and the last, taken just a week ago, was 114. The tests were only taken after I had kidney stone surgery last June, so I'm assuming my PTH level could've been high before that. I'm very worried and am not sure what's causing the problem as my calcium levels are and have always been in the normal range, 9.5 - 10. My last 2 vitamin D levels were 23. My endocrinologist told me that my PTH level is high because my D level is low and to correct that, she wants me to start taking 2,000 IUs per day until the level goes above 30. Another doctor suggested I take 4,000 IUs per day. I know that doctors regularly prescribe D when a persons D level is below 30, but I haven't read from anyone, anywhere that they're high PTH level normalized after taking it. In addition, I've read on some websites that taking vitamin D to treat hyperparathyroidism can actually raise a persons calcium level too high making their hyperparathyroidism worse, so I have some concerns about taking it. Thoughts?

*I'm a new member of the Mayoclinic's health forums and accidentally posted this post to another section of the forum before posting it here.

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

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 19, 2020
In reply to @rea721 "Hi, I am new and not sure if I'm doing this right. My primary doctor says..." + (show)
@rea721

Hi, I am new and not sure if I'm doing this right. My primary doctor says that I have primary hyperparathyroidism. My calcium has been elevated for several years, but my PTH is always in the upper half of the normal range. I also have other symptoms including recently a large kidney stone which was lodged in my ureter. He referred me to an endocrinologist. I saw him yesterday and he basically told me there's nothing he can do, that no surgeon will do surgery because my PTH is not elevated. I've read about the effects elevated calcium and I'm concerned about letting it go. Any info would be appreciated. Thanks rea721

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Hello @rea721, I would like to also welcome you to Mayo Clinic Connect.

I'm happy that Erika, @erikas, invited me to this discussion. I don't understand why doctors refuse to remove the stone in the ureter because your PTH is not elevated. I'm wondering if you perhaps misunderstood what they said. I would encourage you to call the doctor's office and speak with either the doctor, the nurse, or a Physician's Assistant and clarify the reason why the surgery cannot be done for the stone.

In the meantime, I would also consider seeking a second opinion about the surgery for the stone in the ureter. Are you seeing a urologist for this stone?
Are you in a lot of pain?

I look forward to hearing from you again.

REPLY
1 reply
riflemanz64 | @riflemanz64 | Dec 19, 2020
In reply to @rea721 "Yes, I have considered a second opinion, but I wondered if other doctors would feel the..." + (show)
@rea721

Yes, I have considered a second opinion, but I wondered if other doctors would feel the same about not doing a hyperparathyroidectomy surgery because my PTH is in the normal range. Just to clarify, it's parathyroid surgery not kidney stone surgery that the doctor said no surgeon would do because my PTH is normal.

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GET IT OUT! Importantly, about 50% of people with a parathyroid tumor will have PTH levels that are high sometimes and normal sometimes. You do NOT need to have high PTH levels to have a parathyroid tumor. Call Norman Parathyroid Center in Tampa Florida for an expert opinion. My wife had surgery there. Scans are wrong most of the time also. Our Dr.s here in Milwaukee said she only had 1 tumor and she had 3, 2 didn't show. The sooner you get it taken care of the better your going to feel.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 20, 2020
In reply to @rea721 "Yes, I have considered a second opinion, but I wondered if other doctors would feel the..." + (show)
@rea721

Yes, I have considered a second opinion, but I wondered if other doctors would feel the same about not doing a hyperparathyroidectomy surgery because my PTH is in the normal range. Just to clarify, it's parathyroid surgery not kidney stone surgery that the doctor said no surgeon would do because my PTH is normal.

Jump to this post

Hello @rea721

Whenever the parathyroid hormone level is checked, the doctor should always test the calcium level as well. The parathyroid hormone level always needs to be paired with the calcium level. Please check and see if this was done. Often the parathyroid level can be OK, but if the calcium level is high then that shows a need for a closer look at the functioning of the parathyroid.

I would encourage you to take a look at the test results and see if the calcium level was checked and if so if it was normal or elevated.

Here is some information from Mayo Clinic's website about hyperparathyroidism, https://www.mayoclinic.org/diseases-conditions/hyperparathyroidism/symptoms-causes/syc-20356194. I would suggest that you look at the list of symptoms and see how many apply to you.

Is this the first kidney stone you have had? Do you have any bone loss (either osteopenia or osteoporosis) or have you had any fractures? (These can also be symptoms of a parathyroid problem.)

If you feel, after looking at this information, that you should get another opinion, please do so. It is often valuable to go to a multi-disciplinary medical center like Mayo Clinic or a university medical school. They have a lot of research and medical staff that have great skills at diagnosing hard-to-solve health puzzles.

Will you keep in touch and post again?

REPLY
1 reply
rea721 | @rea721 | Dec 20, 2020
In reply to @hopeful33250 "Hello @rea721, I would like to also welcome you to Mayo Clinic Connect. I'm happy that..." + (show)
@hopeful33250

Hello @rea721, I would like to also welcome you to Mayo Clinic Connect.

I'm happy that Erika, @erikas, invited me to this discussion. I don't understand why doctors refuse to remove the stone in the ureter because your PTH is not elevated. I'm wondering if you perhaps misunderstood what they said. I would encourage you to call the doctor's office and speak with either the doctor, the nurse, or a Physician's Assistant and clarify the reason why the surgery cannot be done for the stone.

In the meantime, I would also consider seeking a second opinion about the surgery for the stone in the ureter. Are you seeing a urologist for this stone?
Are you in a lot of pain?

I look forward to hearing from you again.

Jump to this post

I did have surgery for the kidney stone. Sorry for the confusion. I was just stating that I have other symptoms of hyperparathyroidism ( high calcium, kidney stones, etc.)but the endocrinologist that I saw said surgeon will not operate on my parathyroid because my PTH level is normal.

REPLY
rea721 | @rea721 | Dec 20, 2020
In reply to @hopeful33250 "Hello @rea721 Whenever the parathyroid hormone level is checked, the doctor should always test the calcium..." + (show)
@hopeful33250

Hello @rea721

Whenever the parathyroid hormone level is checked, the doctor should always test the calcium level as well. The parathyroid hormone level always needs to be paired with the calcium level. Please check and see if this was done. Often the parathyroid level can be OK, but if the calcium level is high then that shows a need for a closer look at the functioning of the parathyroid.

I would encourage you to take a look at the test results and see if the calcium level was checked and if so if it was normal or elevated.

Here is some information from Mayo Clinic's website about hyperparathyroidism, https://www.mayoclinic.org/diseases-conditions/hyperparathyroidism/symptoms-causes/syc-20356194. I would suggest that you look at the list of symptoms and see how many apply to you.

Is this the first kidney stone you have had? Do you have any bone loss (either osteopenia or osteoporosis) or have you had any fractures? (These can also be symptoms of a parathyroid problem.)

If you feel, after looking at this information, that you should get another opinion, please do so. It is often valuable to go to a multi-disciplinary medical center like Mayo Clinic or a university medical school. They have a lot of research and medical staff that have great skills at diagnosing hard-to-solve health puzzles.

Will you keep in touch and post again?

Jump to this post

Thank you for the information. I looked at the list of symptoms and yes I have several. Elevated calcium, osteopenia, kidney stones, tiring easily, forgetfulness. My doctor did some blood work and I am waiting for the results, so ,I will see what that turns up and if he still don't think its hyperparathyroidism, I will seek another opinion.

REPLY
sandrajune | @sandrajune | Jan 2, 2021
In reply to @rea721 "Hi, I am new and not sure if I'm doing this right. My primary doctor says..." + (show)
@rea721

Hi, I am new and not sure if I'm doing this right. My primary doctor says that I have primary hyperparathyroidism. My calcium has been elevated for several years, but my PTH is always in the upper half of the normal range. I also have other symptoms including recently a large kidney stone which was lodged in my ureter. He referred me to an endocrinologist. I saw him yesterday and he basically told me there's nothing he can do, that no surgeon will do surgery because my PTH is not elevated. I've read about the effects elevated calcium and I'm concerned about letting it go. Any info would be appreciated. Thanks rea721

Jump to this post

My husband has been dealing with his since August 2020. He has finally finished his work up at MD Anderson in Houston for one of the non-cancerous conditions they treat. He saw an endocrine surgeon first. She has been the most thorough doctor we have seen. Besides the usual PTH, calcium and Vit D tests, she ran markers for bone remodeling and a 24-hour urine calcium test. He just had a 4D CT/Sestamibi scan and will be going to surgery soon. He also has had thyroid issues which made for a more complicated situation. We can't say enough about the treatment he has gotten. Read every scientific journal you can get on the internet. Beware of here say and sensational websites. You, too might seek out a consultation there, as well.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 2, 2021
In reply to @rea721 "Hi, I am new and not sure if I'm doing this right. My primary doctor says..." + (show)
@rea721

Hi, I am new and not sure if I'm doing this right. My primary doctor says that I have primary hyperparathyroidism. My calcium has been elevated for several years, but my PTH is always in the upper half of the normal range. I also have other symptoms including recently a large kidney stone which was lodged in my ureter. He referred me to an endocrinologist. I saw him yesterday and he basically told me there's nothing he can do, that no surgeon will do surgery because my PTH is not elevated. I've read about the effects elevated calcium and I'm concerned about letting it go. Any info would be appreciated. Thanks rea721

Jump to this post

Hello @sandrajune

I am glad to hear that your husband got such a good work-up. I'm sure he feels more confident having surgery. Could you share on Connect, what sort of symptoms led him to investigate this?

I had to smile when I read your statement, "He saw an endocrine surgeon first. She has been the most thorough doctor we have seen." I have seen an endocrinologist and I too am very impressed with how knowledgeable she is.

You indicated that he will be having surgery soon. Will this be surgery on the thyroid or the parathyroid? I certainly wish him well. After his surgery, I hope you post an update on how he is doing. Do you mind sharing the date of his surgery?

REPLY
sandrajune | @sandrajune | Jan 2, 2021
In reply to @rea721 "Hi, I am new and not sure if I'm doing this right. My primary doctor says..." + (show)
@rea721

Hi, I am new and not sure if I'm doing this right. My primary doctor says that I have primary hyperparathyroidism. My calcium has been elevated for several years, but my PTH is always in the upper half of the normal range. I also have other symptoms including recently a large kidney stone which was lodged in my ureter. He referred me to an endocrinologist. I saw him yesterday and he basically told me there's nothing he can do, that no surgeon will do surgery because my PTH is not elevated. I've read about the effects elevated calcium and I'm concerned about letting it go. Any info would be appreciated. Thanks rea721

Jump to this post

His first problem was extreme abdominal pain after vomiting for 2 hours in August. The ER Dr. said it could be reflux after negative CT scan and blood work. When I looked at all his blood work later, I noticed his calcium was on the edge of high normal. I looked that up and saw it could be a symptom of pHPT. I then looked at some blood work he had in 2018 when working up a thyroid nodule. The calcium was high back then. Neither the internist or the ENT never caught it two years ago. We were headed to Seattle the first of September and decided to get seen at the U of Washington. I asked for a parathyroid test and it was 188, the top of the norm was 80. That was when we know he had an issue. During August he had about 5 fainting spells and felt generally unwell, with fatigue, weight loss, insomnia, nausea, aches and pains, headache, nervousness and irritability. This continued into October. While we waited to see an endocrinologist, we had thyroid tests and scans. He had a spell getting off the elevator going the the endoccrine appointment. He was hyperthyroid (which was thought to be unrelated) and was started on medication to suppress that. We saw a Head & Neck surgeon who said he was not a candidate for parathyroid surgery since the bone in his forearm showed no bone loss or kidney damage. Four days later he was in the ER again with even worse abdominal pain than in August, requiring more morphine and dilaudid and was almost admitted. We were then traveling to south Texas in our RV for the winter. I looked up MD Anderson, as the surgeon in Washington knew some surgeons there. When I called, they sent us to the Endocrine clinic, (rather than a general head and neck surgeon) and we got this wonderful surgeon who is calling the shots. She is knowledgeable, thorough beyond belief and caring. I had to listen on the phone because of COVID. All the tests have been run, including a 24-hour urine calcium which was abnormal. He saw an endocrinologist because of the thyroid suppressant he was on and he thought the parathyroid might actually be causing fluctuating thyroid functioning and took him off the thyroid suppressant. He had a Sestamibi scan to check for the location of the parathyroid glands last week. He is now ready for surgery. I'm sure that we will hear from them after the holiday with a date. The surgeon here stated that he has a complicated case. From the intake people, nurses and doctors my husband feels he is in the best place possible for his situation. Not that Mayo is off the list, we just happen to be here. I have been treated at Mayo in Rochester and Phoenix and have nothing but wonderful experience with two dermatologists who made a diagnosis that no one previously could. People, read all you can about this disease and be an educated consumer.

REPLY
1 reply
sandrajune | @sandrajune | Jan 2, 2021
In reply to @rea721 "Hi, I am new and not sure if I'm doing this right. My primary doctor says..." + (show)
@rea721

Hi, I am new and not sure if I'm doing this right. My primary doctor says that I have primary hyperparathyroidism. My calcium has been elevated for several years, but my PTH is always in the upper half of the normal range. I also have other symptoms including recently a large kidney stone which was lodged in my ureter. He referred me to an endocrinologist. I saw him yesterday and he basically told me there's nothing he can do, that no surgeon will do surgery because my PTH is not elevated. I've read about the effects elevated calcium and I'm concerned about letting it go. Any info would be appreciated. Thanks rea721

Jump to this post

rea721 - Sounds like you have a complicated case. Since you have bone and kidney complications, I hope you get yourself to a teaching hospital or a multi-discipline center like Mayo or MD Anderson to get yourself diagnosed and treated properly. Hyperparathyroidism is often missed and misunderstood by many doctors. You need someone who has treated many patients in a year, not just a couple.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 2, 2021
In reply to @sandrajune "His first problem was extreme abdominal pain after vomiting for 2 hours in August. The ER..." + (show)
@sandrajune

His first problem was extreme abdominal pain after vomiting for 2 hours in August. The ER Dr. said it could be reflux after negative CT scan and blood work. When I looked at all his blood work later, I noticed his calcium was on the edge of high normal. I looked that up and saw it could be a symptom of pHPT. I then looked at some blood work he had in 2018 when working up a thyroid nodule. The calcium was high back then. Neither the internist or the ENT never caught it two years ago. We were headed to Seattle the first of September and decided to get seen at the U of Washington. I asked for a parathyroid test and it was 188, the top of the norm was 80. That was when we know he had an issue. During August he had about 5 fainting spells and felt generally unwell, with fatigue, weight loss, insomnia, nausea, aches and pains, headache, nervousness and irritability. This continued into October. While we waited to see an endocrinologist, we had thyroid tests and scans. He had a spell getting off the elevator going the the endoccrine appointment. He was hyperthyroid (which was thought to be unrelated) and was started on medication to suppress that. We saw a Head & Neck surgeon who said he was not a candidate for parathyroid surgery since the bone in his forearm showed no bone loss or kidney damage. Four days later he was in the ER again with even worse abdominal pain than in August, requiring more morphine and dilaudid and was almost admitted. We were then traveling to south Texas in our RV for the winter. I looked up MD Anderson, as the surgeon in Washington knew some surgeons there. When I called, they sent us to the Endocrine clinic, (rather than a general head and neck surgeon) and we got this wonderful surgeon who is calling the shots. She is knowledgeable, thorough beyond belief and caring. I had to listen on the phone because of COVID. All the tests have been run, including a 24-hour urine calcium which was abnormal. He saw an endocrinologist because of the thyroid suppressant he was on and he thought the parathyroid might actually be causing fluctuating thyroid functioning and took him off the thyroid suppressant. He had a Sestamibi scan to check for the location of the parathyroid glands last week. He is now ready for surgery. I'm sure that we will hear from them after the holiday with a date. The surgeon here stated that he has a complicated case. From the intake people, nurses and doctors my husband feels he is in the best place possible for his situation. Not that Mayo is off the list, we just happen to be here. I have been treated at Mayo in Rochester and Phoenix and have nothing but wonderful experience with two dermatologists who made a diagnosis that no one previously could. People, read all you can about this disease and be an educated consumer.

Jump to this post

What a very encouraging post, @sandrajune. Once you have a surgery date, I hope you post about it. Best wishes to you both!

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