Thank you for posting this! I hope everyone who has any of the symptoms of hyperparathyroidism watches this! When I went to the doctor five years ago because I felt so terrible and had tried everything that I and my family doctor knew about to treat my symptoms for years and years to no avail. Things like insomnia, chronic constipation, chronic heartburn, really easily dehydrated - to the point of needing to go to the hospital multiple times a year, depression, anxiety and increasing aches in joints. The digestive problems had culminated in getting appendicitis and having to have my appendix removed when it swelled up painfully. After that, the digestive symptoms got better for a few months, then returned to a lesser degree, but still bad enough to really trouble me. My family doctor looked at my chart and listened to me, then became quite concerned when he saw the pattern that was developing. He ordered a full blood and urine test which included calcium and vitamin D which came back with very high levels of calcium but abnormally low vitamin D. After that, he sent me to an endocrinologist who did a series of tests which showed that in addition to abnormally high PTH. We started hoping it was secondary Hyperparathyroidism and tried treating that with vitamin D supplements and dietary changes for two years. Tests done every three months showed that it was helping at first, but later the levels went wrong again even worse than before. When my PTH skyrocketed even higher after dipping for a couple of tests. He recommended a surgeon who also ran a number of tests like sonograms, radioisotope tests, and CT scans, biopsies on my parathyroid and thyroid, including bone density tests, in my hip and arm which showed osteopenia already started. By this time, my symptoms were getting worse despite efforts to treat them in other ways including overall itch, worsening and spreading aches and pains, worsening insomnia as well as depression and anxiety (nothing we did for these things was helping), brain fog and memory recall problems and exhaustion. They found a tumor on my thyroid which fortunately wound up being benign, but that was worrisome until the results came back. They also found out that one of my parathyroid glands was swelling with a benign tumor. During the surgery, they did PTH tests and after they removed the single gland, the levels of PTH dropped almost right away. We'll see in a few weeks if the tests show that PTH levels are staying down and what calcium and vitamin D are doing. After surgery, the surgeon told us that this gland had swollen to the point that it was starting to attach to my vocal chords and he had to very carefully cut it away from them. Good thing he is very good at that because my voice is still ok now. I'm starting to feel a little bit better but the improvement is quite slow, subtle and I have had days in the past 21 days when I have felt worse, like I've lost progress. About four days after my surgery, I started getting numbness and tingling in my extremities and face, so I started taking calcium supplements as they directed which seems to help. I've been gradually increasing the amount of calcium in my diet and taking multiple vitamin supplements which have helped with mouth sores (especially the vitamin C) and vitamin D and magnesium to help with digesting the calcium. I've been able to be a bit more active since my surgery. I wouldn't say that my pain has reduced very much, but just enough that I can tolerate activities better than I used to. My mind is maybe a bit better, but I still have times when I still struggle to remember things I've known for years or things that I should still remember because I've just been told them. But it's a bit better than it was. My neck is still swollen and sore, but I'm making myself exercise it and put ice on it. Swallowing and especially yawning is still a bit painful but getting a little better. sonograms, radioisotope tests, and CT scans. I was 50 when I had this surgery done here in the U.S. in Nevada. I hope that I'll eventually have complete recovery. Thanks again for posting this video! Thanks to all who were involved, especially to Dr. Crowley for her comments on what to do about managing symptoms. I really appreciate what you said about this condition of Hyperparathyroidism not being the patient's fault. I was fairly healthy before I started getting these symptoms over five years ago, but all of a sudden, I started going downhill despite my best efforts to be healthy. It was so frustrating, confusing and distressing. I am perhaps lucky that I was able to get the surgery within three months after the endocrinologist and the surgeon were both convinced that it needed to be done. Also that it 'only' took five years to come to that conclusion. Watching videos about this condition on TH-cam and reading articles on several websites in the past two years has really taught me a lot, including to be thankful that I'm not dealing with this condition in a country where it is so difficult to get proper health care.
Very clear examples, of where, and why beliefs, poor education, lack of integrity and political standing/economic investments, that create medical care turmoil.
Thank you very much for this presentation. I’m due to be having surgery in a couple of weeks and the information that you have shared has been most valuable.
Why are we made to watch and wait when NICE guidelines say surgery required when calcium is over 2.60mmol and pth is above mid point on 2 occasions. What are we actually waiting for? Are we waiting for us to develop other illnesses like osteoporosis and kidney stones? Surely its less costly to the NHS to treat the hyperpara. If scans arent done to diagnose why are they done? The old bilateral neck exploratory must be better to ensure a cure since not all hospitals have the technology for doing intraoperative testing. The group im a member of hyperparathyroidukaction4change have many members who have had failed targeted surgery meaning further un necessary surgery......
![[WEBINAR] Hypoparathyroidism Diagnosis and Advances in Management in 2020](/img/n.gif)
Thank you for posting this! I hope everyone who has any of the symptoms of hyperparathyroidism watches this!
When I went to the doctor five years ago because I felt so terrible and had tried everything that I and my family doctor knew about to treat my symptoms for years and years to no avail. Things like insomnia, chronic constipation, chronic heartburn, really easily dehydrated - to the point of needing to go to the hospital multiple times a year, depression, anxiety and increasing aches in joints. The digestive problems had culminated in getting appendicitis and having to have my appendix removed when it swelled up painfully. After that, the digestive symptoms got better for a few months, then returned to a lesser degree, but still bad enough to really trouble me.
My family doctor looked at my chart and listened to me, then became quite concerned when he saw the pattern that was developing. He ordered a full blood and urine test which included calcium and vitamin D which came back with very high levels of calcium but abnormally low vitamin D. After that, he sent me to an endocrinologist who did a series of tests which showed that in addition to abnormally high PTH. We started hoping it was secondary Hyperparathyroidism and tried treating that with vitamin D supplements and dietary changes for two years. Tests done every three months showed that it was helping at first, but later the levels went wrong again even worse than before.
When my PTH skyrocketed even higher after dipping for a couple of tests. He recommended a surgeon who also ran a number of tests like sonograms, radioisotope tests, and CT scans, biopsies on my parathyroid and thyroid, including bone density tests, in my hip and arm which showed osteopenia already started. By this time, my symptoms were getting worse despite efforts to treat them in other ways including overall itch, worsening and spreading aches and pains, worsening insomnia as well as depression and anxiety (nothing we did for these things was helping), brain fog and memory recall problems and exhaustion.
They found a tumor on my thyroid which fortunately wound up being benign, but that was worrisome until the results came back. They also found out that one of my parathyroid glands was swelling with a benign tumor.
During the surgery, they did PTH tests and after they removed the single gland, the levels of PTH dropped almost right away. We'll see in a few weeks if the tests show that PTH levels are staying down and what calcium and vitamin D are doing.
After surgery, the surgeon told us that this gland had swollen to the point that it was starting to attach to my vocal chords and he had to very carefully cut it away from them. Good thing he is very good at that because my voice is still ok now. I'm starting to feel a little bit better but the improvement is quite slow, subtle and I have had days in the past 21 days when I have felt worse, like I've lost progress. About four days after my surgery, I started getting numbness and tingling in my extremities and face, so I started taking calcium supplements as they directed which seems to help.
I've been gradually increasing the amount of calcium in my diet and taking multiple vitamin supplements which have helped with mouth sores (especially the vitamin C) and vitamin D and magnesium to help with digesting the calcium.
I've been able to be a bit more active since my surgery. I wouldn't say that my pain has reduced very much, but just enough that I can tolerate activities better than I used to. My mind is maybe a bit better, but I still have times when I still struggle to remember things I've known for years or things that I should still remember because I've just been told them. But it's a bit better than it was.
My neck is still swollen and sore, but I'm making myself exercise it and put ice on it. Swallowing and especially yawning is still a bit painful but getting a little better. sonograms, radioisotope tests, and CT scans.
I was 50 when I had this surgery done here in the U.S. in Nevada. I hope that I'll eventually have complete recovery.
Thanks again for posting this video! Thanks to all who were involved, especially to Dr. Crowley for her comments on what to do about managing symptoms. I really appreciate what you said about this condition of Hyperparathyroidism not being the patient's fault. I was fairly healthy before I started getting these symptoms over five years ago, but all of a sudden, I started going downhill despite my best efforts to be healthy. It was so frustrating, confusing and distressing. I am perhaps lucky that I was able to get the surgery within three months after the endocrinologist and the surgeon were both convinced that it needed to be done. Also that it 'only' took five years to come to that conclusion. Watching videos about this condition on TH-cam and reading articles on several websites in the past two years has really taught me a lot, including to be thankful that I'm not dealing with this condition in a country where it is so difficult to get proper health care.
Thank you for this webinar! It is very informative.
Very clear examples, of where, and why beliefs, poor education, lack of integrity and political standing/economic investments, that create medical care turmoil.
Thank you very much for this presentation. I’m due to be having surgery in a couple of weeks and the information that you have shared has been most valuable.
Why are we made to watch and wait when NICE guidelines say surgery required when calcium is over 2.60mmol and pth is above mid point on 2 occasions. What are we actually waiting for? Are we waiting for us to develop other illnesses like osteoporosis and kidney stones? Surely its less costly to the NHS to treat the hyperpara. If scans arent done to diagnose why are they done? The old bilateral neck exploratory must be better to ensure a cure since not all hospitals have the technology for doing intraoperative testing. The group im a member of hyperparathyroidukaction4change have many members who have had failed targeted surgery meaning further un necessary surgery......