Elevated parathyroid hormone (PTH): How is it treated?

Pth 158 calcium 9.9 normal and high vitam d
Anyone with experience like this ???

I have a 14 yr old daughter. 2.5 years ago she was hospitalized for a 5.3 calcium and a 638 PTH she was 12 at the time. We have been working with an endocrinologist for two years but she does not want to take her medication we did get the calcium up to 9.5 and the PTH down to 228 in January 2023. We just did the blood work again today. She has not been taking her medicine calcium 7.7 PTH 386. She was diagnosed with para pseudo hypo parathyroidism 1B I understand this is an unusual diagnosis Mike she need surgery for her parathyroid?

I have a 14 yr old daughter. 2.5 years ago she was hospitalized for a 5.3 calcium and a 638 PTH she was 12 at the time. We have been working with an endocrinologist for two years but she does not want to take her medication we did get the calcium up to 9.5 and the PTH down to 228 in January 2023. We just did the blood work again today. She has not been taking her medicine calcium 7.7 PTH 386. She was diagnosed with para pseudo hypo parathyroidism 1B I understand this is an unusual diagnosis Mike she need surgery for her parathyroid?

You have to supplement Vita. D3 in order for calcium to absorb. What are her Vita. D levels? My parathyroid was elevated & my endocrinologist explained that it was because my Vita. D was low, causing me not to absorb my calcium. Hope this helps.

Hello @ajbroffitt and welcome to the Diabetes & Endocrine System Support Group on Mayo Connect. I read with a great deal of interest about the problems of your teen daughter. As a mother myself, I can imagine that you must be concerned about this health issue.

Just a few questions: you mentioned that she is not taking her medicine, what kind of medication was suggested? Also, is she seeing a pediatric endocrinologist? Other than her blood work being abnormal, how does she feel? Is she eating, sleeping and does she have energy?

Have you considered a second opinion with a research-oriented medical facility such as a university medical school or a facility like Mayo Clinic. If you are not nearby one of these types of medical facilities, you might contact them for a virtual consultation. Here is information on obtaining an appointment with Mayo Clinic, http://mayocl.in/1mtmR63.

I look forward to hearing from you again with some more information.

This was a long journey that started when she was 10 1/2. She started having numbness in her feet. The pediatrician said it was growing pains over the next six months the numbness got worse and worse, and there were times when her feet would be so numb that she would fall down, they had done all of the regular bloodwork but at one point they decided to check her calcium level. They were so concerned that they called me on a Sunday and wanted me to bring her to Children’s Hospital on Monday. At that point her calcium level was a 5.5. They admitted her into Children’s Hospital where they gave her IV calcium. She was hospitalized for four days and after leaving the hospital her calcium level was close to seven over the past two years. We have struggled with her, not wanting to take medication, and at one point we did get her level up to a 9.3 since then that was in January since then she decided she did not wanna take her medication and we went this week. Her calcium level was a 7.7 that’s where it was two years ago , the medication that she is taking is Calcitrol .5 MCG capsules. She takes two in the morning and two at night. In addition he takes cow trait, bone health 600+ D3 one in the morning and one at night. At this point the numbness has not come back, but she is always tired , they did all of the bloodwork at Children’s Hospital in DC. And yes she is seeing a pediatric endocrinologist. They did x-rays of her whole body to see where there could be. Calcium deposits. She does have some calcium deposits on her brain and it has caused forgetfulness in school. She now has an IEP for extra help in her education. She is an honor roll student and starts her freshman year in high school this September , she is overweight and some of that can be this pseudo hypo parathyroidism 1B. The endocrinologist said this is pretty rare.
Hope this gives you more insight. This will be a lifelong issue so taking her meds will continue to be an issue

This was a long journey that started when she was 10 1/2. She started having numbness in her feet. The pediatrician said it was growing pains over the next six months the numbness got worse and worse, and there were times when her feet would be so numb that she would fall down, they had done all of the regular bloodwork but at one point they decided to check her calcium level. They were so concerned that they called me on a Sunday and wanted me to bring her to Children’s Hospital on Monday. At that point her calcium level was a 5.5. They admitted her into Children’s Hospital where they gave her IV calcium. She was hospitalized for four days and after leaving the hospital her calcium level was close to seven over the past two years. We have struggled with her, not wanting to take medication, and at one point we did get her level up to a 9.3 since then that was in January since then she decided she did not wanna take her medication and we went this week. Her calcium level was a 7.7 that’s where it was two years ago , the medication that she is taking is Calcitrol .5 MCG capsules. She takes two in the morning and two at night. In addition he takes cow trait, bone health 600+ D3 one in the morning and one at night. At this point the numbness has not come back, but she is always tired , they did all of the bloodwork at Children’s Hospital in DC. And yes she is seeing a pediatric endocrinologist. They did x-rays of her whole body to see where there could be. Calcium deposits. She does have some calcium deposits on her brain and it has caused forgetfulness in school. She now has an IEP for extra help in her education. She is an honor roll student and starts her freshman year in high school this September , she is overweight and some of that can be this pseudo hypo parathyroidism 1B. The endocrinologist said this is pretty rare.
Hope this gives you more insight. This will be a lifelong issue so taking her meds will continue to be an issue

Thanks for the additional information. I'm also wondering if a DEXA scan has been done to check her bone density?

It sounds like she is being treated by a good specialist and that she has a rare problem. You can, of course, get a second opinion, if you continue to feel concerned. Has anyone in the family had a similar disorder?

Do you feel that a second opinion might put your mind at ease regarding her treatment?

Thanks for the additional information. I'm also wondering if a DEXA scan has been done to check her bone density?

It sounds like she is being treated by a good specialist and that she has a rare problem. You can, of course, get a second opinion, if you continue to feel concerned. Has anyone in the family had a similar disorder?

Do you feel that a second opinion might put your mind at ease regarding her treatment?