1. < Diabetes & Endocrine System

Any one been diagnosed with Primary Hyperparathyroidism

Posted by kitty2 @kitty2, Dec 17, 2023

Has anyone been diagnosed with primary hyperparathyroidism? I was told I needed to have surgery and there is nothing else that can be done. I would love to hear from you . This all started when I had a dex scan for Osteoporosis. First my bone scan scores were bad and then I had lab work, a 24 hour urine test and then a cat scan on my neck. The next thing is another CT where they inject isotope. I fear having this surgery. I just got Covid again and my respiratory system is not in the best shape . Thank you Kitty2

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kitty2 | @kitty2 | Dec 22, 2023
In reply to @ssmab "Hello @sirene, 10.2 is the high end of normal. So if you don’t have osteoporosis, kidney..." + (show)
@ssmab

Hello @sirene,
10.2 is the high end of normal. So if you don’t have osteoporosis, kidney stones, fatigue, constipation, or the other symptoms that point to overactive parathyroids then that’s ok. Does your blood testing include a PTH test? That’s a test measuring your parathyroid hormone level. The normal range for an adult is 14-65 pg/ml. Mine was in the high 70s when my blood calcium level was 10.2. Interesting the 10 years prior to my surgery when my primary care Doctor was watching my levels, my blood calcium went higher a few times, as much as 10.6 one year but then my PTH would be lower, that year it was 9.9 But one of those levels, either the blood calcium level or the PTH, was high every year for me and when the surgeon saw my history he said I had had hyperparathyroidism for years. When those blood test numbers are not normal it’s cause to get an appointment with an endocrinologist to get it checked out. I wish I had known that. If your PTH level is in in the normal 14-65pg/ml level, then no cause for concern.

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My PTH on November 17th was 70.5. I am having another scan today with the isotope injections. They saw a 3mm adenoma on the first ct. Thanks so much for your reply..Merry Christmas. Sincerely Kitty2

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riflemanz64 | @riflemanz64 | Dec 22, 2023

If you have surgery ask them if they check all 4 glands. Scans don't always show the adenomas.

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sirene | @sirene | Dec 22, 2023
In reply to @ssmab "Hello @sirene, 10.2 is the high end of normal. So if you don’t have osteoporosis, kidney..." + (show)
@ssmab

Hello @sirene,
10.2 is the high end of normal. So if you don’t have osteoporosis, kidney stones, fatigue, constipation, or the other symptoms that point to overactive parathyroids then that’s ok. Does your blood testing include a PTH test? That’s a test measuring your parathyroid hormone level. The normal range for an adult is 14-65 pg/ml. Mine was in the high 70s when my blood calcium level was 10.2. Interesting the 10 years prior to my surgery when my primary care Doctor was watching my levels, my blood calcium went higher a few times, as much as 10.6 one year but then my PTH would be lower, that year it was 9.9 But one of those levels, either the blood calcium level or the PTH, was high every year for me and when the surgeon saw my history he said I had had hyperparathyroidism for years. When those blood test numbers are not normal it’s cause to get an appointment with an endocrinologist to get it checked out. I wish I had known that. If your PTH level is in in the normal 14-65pg/ml level, then no cause for concern.

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Thank you, I am going to go back and look at my bloodwork to see if they tested PTH. But I don’t remember seeing it. I contacted my endocrinologist, who I see in May. I may move the appointment up. Thanks again.

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1 reply
marceen | @marceen | Dec 22, 2023
In reply to @ssmab "Hello @sirene, 10.2 is the high end of normal. So if you don’t have osteoporosis, kidney..." + (show)
@ssmab

Hello @sirene,
10.2 is the high end of normal. So if you don’t have osteoporosis, kidney stones, fatigue, constipation, or the other symptoms that point to overactive parathyroids then that’s ok. Does your blood testing include a PTH test? That’s a test measuring your parathyroid hormone level. The normal range for an adult is 14-65 pg/ml. Mine was in the high 70s when my blood calcium level was 10.2. Interesting the 10 years prior to my surgery when my primary care Doctor was watching my levels, my blood calcium went higher a few times, as much as 10.6 one year but then my PTH would be lower, that year it was 9.9 But one of those levels, either the blood calcium level or the PTH, was high every year for me and when the surgeon saw my history he said I had had hyperparathyroidism for years. When those blood test numbers are not normal it’s cause to get an appointment with an endocrinologist to get it checked out. I wish I had known that. If your PTH level is in in the normal 14-65pg/ml level, then no cause for concern.

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watch and wait..........yielded just bone loss. One of the endocrinologists in Oregon did a study on watch and wait. But the goal was also to determine the cost the the medical facility...ie, profit. In the 5 years of waiting my bone loss went way down and this was because of watch and wait....hell, a portion of the people in the study would have died just of old age and thus skewing the results. The radioactive tracing is good for tracing the location of the erratic parathyroid. Usually this is done right before surgery so "the right one" can be found because there is no reason to extract the good ones......just the hyperactive one. Mine happened to be hiding behind my thyroid but the radiology scan pinpointed it. (again the Norman Clinic) Also in medical history, there was not even a name for a parathyroid. I think this was even up to about 1940 (?? - can't remember). But the parathyroid has a distinct function apart from the thyroid. We need both. By the way, if you look up the Norman Clinic, there is a video of the surgery and it shows precisely the method of locating. My surgery was one day and no pain even though there was a 4 hour flight mixed in there.

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riflemanz64 | @riflemanz64 | Dec 22, 2023

Here in Milwaukee the surgeon said she had 1 bad gland and that they only were going to take that one out and not check the other 3. The surgeon didn’t want to answer our questions and wanted my wife to get genetic testing wasting more of our money. I told my wife you’re going to Florida if I have to drag you on the airplane. She finally said she’d go and off we went! We had a great time. Surgery went great and we were back in the hotel in about 6 hours. She had 3 glands removed and they checked her thyroid nodules. We flew back the next day. We both loved Norman Parathyroid Center. Best money we’ve spent ever!

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cmael | @cmael | Dec 23, 2023

I had a parathyroid adenoma removed several years ago. I did spend the night in the hospital so they could monitor my levels. I had no pain with the surgery. I may have another adenoma since my parathyroid levels seem Toruń high and my calcium is at the top of normal. I’ve also had a kidney transplant and that complicates the results.

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ssmab | @ssmab | Dec 23, 2023
In reply to @sirene "Thank you, I am going to go back and look at my bloodwork to see if..." + (show)
@sirene

Thank you, I am going to go back and look at my bloodwork to see if they tested PTH. But I don’t remember seeing it. I contacted my endocrinologist, who I see in May. I may move the appointment up. Thanks again.

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Hope you can get in earlier than May. Merry Christmas❤️

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1 reply
marceen | @marceen | Dec 23, 2023
In reply to @ssmab "Hope you can get in earlier than May. Merry Christmas❤️" + (show)
@ssmab

Hope you can get in earlier than May. Merry Christmas❤️

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make sure they check calcium, vitamin d and PTH at the minimum............all the T3, 4, etc is good too. I get the feeling they don't like to do the PTH because it is abit more expensive and also the halflife for seeing results is like about 15 minutes..... You can also order a full thyroid profile through lab corp and/or quest labs. Internet appointment and self pay-but at least you get what you want.

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katya12 (Greg) | @katya12 | Dec 25, 2023
In reply to @ssmab "Yes I had surgery for hyperparathyroidism in the summer of 2021. I am very happy that..." + (show)
@ssmab

Yes I had surgery for hyperparathyroidism in the summer of 2021. I am very happy that I had it done. It can wreak a lot of havoc on your body if it goes undiagnosed for a long time. I went undiagnosed for years even tho I saw my internist every year and I saw a nephrologist every year for kidney stones (kidney stones, fatigue, and osteoporosis (all of which I had) are hallmarks for Hyperparathyroidism). My calcium blood level was fairly high(10.2) but not super high. Finally a new nephrologist I went to said I should see an endocrinologist. The endocrinologist diagnosed me as hyperparathyroid and I was scheduled for surgery within 2 months, with a surgeon in our town who is a specialist in parathyroid and thyroid surgery. It is very important to have a surgeon who has done many parathyroid surgeries as a general surgeon may not know the best techniques. He said he thought I had the problem for over 10 years and everyone missed it, even with my stones, osteoporosis and blood tests. The surgery was not terrible at all! It’s outpatient and you have a small incision on your neck ( I can hardly see mine now), you rest at home for 2 to 3 days and you are back to normal. I have not had a kidney stone since, I am on Zometa for osteoporosis and my fatigue went away. I felt my brain was fuzzy for a few years before the surgery, that got better too. There is no pill you can take for hyperparathyroids, you need surgery to reverse the problem. If it goes undetected for a long time it can affect your heart and other organs. There is also there is a link to breast cancer which unfortunately I had in 2022. Who knows if I had been diagnosed as hyperparathyroid in a timely manner if the breast cancer would have happened. I also broke a wrist, and had 2 spinal compression fractures. The bottom line is overactive parathyroids are nothing to fool around with. If your doctor says he is watching them, after what happened to me, I would insist on seeing a reputable endocrinologist to give me an opinion. Good luck to you and to the person who is being watched by her doctor. My doctor was watching but missed it. I just don’t want others to go through what I did. Sending wellness wishes to all on this board.

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I was diagnosed with Graves disease and hyperthyroidism. I don't have faith in my endocrinologist. The last time I saw her was four months ago, and I won't see her again until February next year. I have so many things wrong with my body. Since my diagnosis of Graves disease, I have been diagnosed with BPH, fungal infections, high blood pressure, and pelvic floor dysfunction. I need to find another endocrinologist.

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2 replies
kitty2 | @kitty2 | Dec 25, 2023
In reply to @katya12 "I was diagnosed with Graves disease and hyperthyroidism. I don't have faith in my endocrinologist. The..." + (show)
@katya12

I was diagnosed with Graves disease and hyperthyroidism. I don't have faith in my endocrinologist. The last time I saw her was four months ago, and I won't see her again until February next year. I have so many things wrong with my body. Since my diagnosis of Graves disease, I have been diagnosed with BPH, fungal infections, high blood pressure, and pelvic floor dysfunction. I need to find another endocrinologist.

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Hi..I sure hope you are able to find a new endocrinologist. It is so hard to get an appointment anywhere these days. I hope you had a restful and peaceful holiday..not fun when you are not feeling well. Take care..hoping you feel better. I am waiting for my results from my CT scan from friday. Sincerely, Kitty2

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