mlana
Pearl Clutcher
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Post by mlana on Jul 21, 2022 2:51:05 GMT
I’m so glad he did well during the surgery.
My DH has stage 5 kidney disease (CKD) and his parathyroid level is higher than your son’s pre surgery level. He takes meds to try to bring it down, so this level is with him on the max level of meds.
I appreciate you sharing this information. I will be discussing this more in depth with his nephrologist and endocrinologist on our next visits.
Marcy
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Post by Lexica on Jul 21, 2022 3:50:41 GMT
I’m so glad he did well during the surgery. My DH has stage 5 kidney disease (CKD) and his parathyroid level is higher than your son’s pre surgery level. He takes meds to try to bring it down, so this level is with him on the max level of meds. I appreciate you sharing this information. I will be discussing this more in depth with his nephrologist and endocrinologist on our next visits. Marcy Marcy, I’m sorry about your husband. When I was doing my research, one of the patients that successfully received a healthy parathyroid transplant was a woman with kidney disease. I don’t know the stage. Have they talked about removing all but a small piece of his parathyroid glands? I would think that would get his numbers lowered better than medication would. I shudder to think what your husband’s level would be without medication. Do you know what caused his kidney issues in the first place? I know frequent kidney stones is one of the listed symptoms of hyperparathyroidism. I would be interested in hearing what you learn from your next visit. |
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Post by deafpea on Jul 21, 2022 3:58:22 GMT
This was all very interesting. Thank you for sharing.
Also, I’m glad the surgery went well and I hope your son has a full recovery!
Merilee
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Deleted
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Aug 18, 2025 19:36:23 GMT
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Post by Deleted on Jul 21, 2022 5:06:54 GMT
Prayers to your son (and to you and the family) for a quick, painless recovery. I'm all to familiar with the after effects of scar tissue and the pain that it causes. I'm so sorry. Glad he got this done in such a wonderful hospital!!!
Hugs to you in particular. Much love to you. xoxo
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Post by cmhs on Jul 21, 2022 10:43:10 GMT
I'm glad your son's surgery went well. It's a disease that few people know about -- even some doctors, apparently. I traveled from NJ to AZ for my parathyroid surgery in April. My surgeon is one of the best in the country - all she does is parathyroid surgeries. She removed two adenomas as well as a thyroid nodule. So many doctors I saw have no idea how to treat hyperthyroidism. They all said wait and see. The problem with that though is that the only cure is surgery and the longer you wait, the crappier you feel! I had to do all my own research and learned quite a bit in the process. I'm so glad I did it. I hope your son's recovery is easy and swift! Eta: you mentioned his calcium level was 300. Could that have been his PTH level? High Calcium levels are in the 10.2 - 12 ish range.
I’m a little confused. Did you have an issue with your thyroid, your parathyroid, or both? And yes, it was his PTH level. Thank you for pointing that out. I guess I was just so excited to have him out of surgery that my brain jumped from testing his blood for the PTH that regulates the calcium to just typing calcium. I had issues with my parathyroid glands. Two of them had to be removed. There also happened to be a benign nodule on my thyroid that she removed while she was in there. |
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Post by teddyw on Jul 21, 2022 11:00:58 GMT
Glad to read your update.
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Post by gramasue on Jul 21, 2022 13:09:44 GMT
I'm so glad to hear your son's surgery went well. Sending positive thoughts your way that he continues to improve.
Thank you for a very interesting and informative post. I actually learned a lot!
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maurchclt
Pearl Clutcher
Posts: 3,654
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Post by maurchclt on Jul 21, 2022 14:27:51 GMT
Thanks for the update, continued good wishes for your son.
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Post by Lexica on Jul 21, 2022 14:54:41 GMT
I just texted with him this morning and he said he feels like they fixed his brain during the procedure. He said it had gotten so bad that someone could tell him a string of 6 numbers and then ask him to repeat them back two minutes later and he couldn’t do it. When he woke this morning, he said he feels so excited and so motivated because he has his brain functioning again.
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Post by denda on Jul 21, 2022 15:18:15 GMT
God is Good! So happy things are going well for your son.
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scrappert
Prolific Pea
RefuPea #2956
Posts: 7,994
Location: Milwaukee, WI area
Jul 11, 2014 21:20:09 GMT
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Post by scrappert on Jul 21, 2022 17:44:48 GMT
I just texted with him this morning and he said he feels like they fixed his brain during the procedure. He said it had gotten so bad that someone could tell him a string of 6 numbers and then ask him to repeat them back two minutes later and he couldn’t do it. When he woke this morning, he said he feels so excited and so motivated because he has his brain functioning again. So glad to hear this. I also had an over active parathyroid. It truly is amazing how that fog lifts and you feel clear again! I went to the dr to check my blood as I thought I was having diabetes symptoms, turns out it was high calcium. On one of the last blood checks, the technician called a doctor and he called me and asked how I felt about checking myself into the hospital? The progression of the calcium levels were going up and up in a months time. I was over 14. This issue is usually found in the older generation, I was in my 40's. The hospital staff had to keep asking if I was in there for the right thing! I assured them I was.  |
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Post by Lexica on Jul 21, 2022 17:50:13 GMT
Thank you for sharing this information, it’s fascinating! I have hashitoxicosis and have been feeling really off lately. I see my Endo on Friday, and am going to ask about this. I’m so glad your son is doing well! I had to read up on hashitoxicosis because I had never heard of it. Why don’t they just remove the thyroid gland all together and put you on replacement meds? Or is there a possibility that your thyroid gland might be healed and return to normal? I saw something about the duration of hashitoxicosis being between 3 to 24 months. And I don’t know if that means you go back to having a healthy thyroid or what. But, left untreated, it is life threatening. And I saw this, that I found very disturbing: Since COVID-19 outbreak, various case reports have been reported that SARS-CoV-2 is thought as a possible trigger [7,8]. Furthermore, recent reports showed that Graves' disease and Hashimoto's thyroiditis might occur following COVID-19 infection.Have you had COVID 19? If this is a possible result of having had COVID, along with so many other long-term symptoms that people are reporting, this needs to be talked about in the news. People who have had COVID need to know this is a possibility so they can watch for the symptoms and get proper treatment. I knew we had parathyroid glands because they were mentioned in some of the research material my sister gave me to read. But I didn’t know the extent of what they did for the body and how critical they are. I also didn’t know that radiation in the neck area could create hyperparathyroidism. I wonder of COVID-19 can affect those glands as well? |
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scrappinghappy
Pearl Clutcher
“I’m late, I’m late for a very important date. No time to say “Hello.” Goodbye. I’m late...."
Posts: 4,307
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Post by scrappinghappy on Jul 21, 2022 18:34:06 GMT
Happy to hear the surgery was such a success. Just curious if he has a nuclear test and if it could determine if he has any other active PT glands
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Post by Lexica on Jul 21, 2022 19:42:34 GMT
Happy to hear the surgery was such a success. Just curious if he has a nuclear test and if it could determine if he has any other active PT glands I don’t know the answer to this question. He is an adult now and handling everything on his own, which I support 100%. And he is being assisted by his fiancé since his mind was not fully functioning. Something I didn’t know until he told me he needed more surgery and why. (That he was struggling mentally that is) I had no idea he had gotten to that state and I know he wasn’t keen on sharing that information until he knew the cause. His paternal grandmother had Alzheimer’s and he has long expressed a fear of getting it. I know they did some sort of test on a machine that my son said was new and cutting edge and apparently the only machine like it in the country at the moment. Now what that test was for, I don’t know. From what I gathered, he will have another test when he gets back to Idaho with his endocrinologist, the doctor that sent him to Mayo to have the surgery done. I assumed this was a blood test to measure his PTH to compare it to the last one he had while in surgery, but I don’t know for sure. Whatever it is, it will let them know if his levels are stable, rising, or falling. And from that, they know whether or not there are living parathyroid in his body. How is that for a long “I have no clue” answer? |
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Post by mikklynn on Jul 21, 2022 20:17:20 GMT
My sister had 3 of 4 parathyroid glands removed at Mayo. Her's were causing constant kidney stones. I had never heard of them before that. I hope it all works for him. Had your sister received any radiation in her neck during her life? And isn’t Mayo the best! My son said a lot of it is exactly as it looked when he was 9 years old and we went there. And yes, kidney stones was one of the things on the list of symptoms from an overactive parathyroid. And forgetfulness, depression, and many other issues including heart disease. All from a tiny bitty gland. No. She has seen every expert at Mayo and the U of M and Hennepin County. Everyone is stumped, because she still has chronic kidney stones. It's awful. The Mayo and U of M are amazing. We are so blessed to have them here. |
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Post by Lexica on Jul 21, 2022 21:11:30 GMT
Oh, mikklynn, I feel so bad for your sister. I’ve never had a kidney stone but have a friend that had them and she was in agony. When she finally passed them, she was surprised at their size. She said she would have sworn they were baseball sized based on the pain. Baseballs with razors sticking out all over them. I can’t imagine having to repeat something like that over and over again. Your poor sister. Is it constant or in bouts? Does she at least get a few weeks break between getting them? I really hope someone has an answer for her and soon! And I would have thought a doctor at Mayo would have found the cause. I know it is because they saved my son’s life that I hold them in such high esteem. During our many trips there we talked to multiple patients that had stories like ours. And these were people from all over the world that traveled there just like we did. No one knew how to help them until they ended up at Mayo and the Mayo experts solved their case. My son said he had a test ( I don’t know what for) using some machine at Mayo that he was told is the only machine like it in the country. Back when my son had his cancer, Mayo had the only machine in the country at that time that was capable of doing a full body scan and finding even the tiniest speck of cancer. That machine was one of the reasons that we moved his care to Minnesota in the first place. More so it was the reputation of the surgeon that had done multiple cases of the specific surgery on pediatric patients. I don’t know how they do it, but they have the best equipment and the best of the best doctors. And we were really impressed with the nurses too. My son’s surgeon had his own staff of recovery nurses. I guess he was very particular. What I appreciated was their wealth of knowledge regarding my son’s care. You are fortunate to live where you can be treated at Mayo. Have you ever been treated there? Do residents of Minnesota get any special perk? |
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Post by mikklynn on Jul 22, 2022 11:45:14 GMT
Oh, mikklynn , I feel so bad for your sister. I’ve never had a kidney stone but have a friend that had them and she was in agony. When she finally passed them, she was surprised at their size. She said she would have sworn they were baseball sized based on the pain. Baseballs with razors sticking out all over them. I can’t imagine having to repeat something like that over and over again. Your poor sister. Is it constant or in bouts? Does she at least get a few weeks break between getting them? I really hope someone has an answer for her and soon! And I would have thought a doctor at Mayo would have found the cause. I know it is because they saved my son’s life that I hold them in such high esteem. During our many trips there we talked to multiple patients that had stories like ours. And these were people from all over the world that traveled there just like we did. No one knew how to help them until they ended up at Mayo and the Mayo experts solved their case. My son said he had a test ( I don’t know what for) using some machine at Mayo that he was told is the only machine like it in the country. Back when my son had his cancer, Mayo had the only machine in the country at that time that was capable of doing a full body scan and finding even the tiniest speck of cancer. That machine was one of the reasons that we moved his care to Minnesota in the first place. More so it was the reputation of the surgeon that had done multiple cases of the specific surgery on pediatric patients. I don’t know how they do it, but they have the best equipment and the best of the best doctors. And we were really impressed with the nurses too. My son’s surgeon had his own staff of recovery nurses. I guess he was very particular. What I appreciated was their wealth of knowledge regarding my son’s care. You are fortunate to live where you can be treated at Mayo. Have you ever been treated there? Do residents of Minnesota get any special perk? She does get some brief breaks. No one has figured out a fix, although she still goes to Mayo regularly. I'm fortunate to not require their services! We don't get any special perks, lol. |
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