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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If an adenoma was seen on a scan, then you probably do need surgery to remove it. I have had dexa bone scans and 24 hour urine tests and so far all ok. 175 I think was my highest PTH, but it fluctuates but never normal. I am aware there are many symptoms a person can have with elevated PTH, but luckily I have none. I hope you will be ok. I have read it is important to have a surgeon who does alot of these surgeries.

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My parathyroidism picked in ordinary blood test. Calcium highish but still normal.

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My doctor was curious about my calcium levels and my parathyroid markers were very high so she referred me to the world famous clinic in Tampa, Florida. They were very professional and thorough. Three of my four parathyroid glands were effected so they removed them. Outpatient surgery, not a big deal. I believe my Afib and osteoporosis were caused by this irregularity, so I'm glad I got it taken care of. I had an ablation 18 months ago and so far no more Afib incidences. Osteoporosis is there but not getting worse so far. 😊

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I agree................at least the osteoporosis is stable. Norman was great.
The calcium leaching from the bones could have gotten worse over time...........mine is stable now.
Actually rebuilding bone from osteoporosis is another issue??? - lots of research. Mostly the over the top promises with drugs like prolia.........this can cause necrosis of the jaw among other things. I don't want the side effects and have to eat pudding for the rest of my life. marceen in oregon

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My wife also went to the Norman Parathyroid center in Florida. We give a 5 star rating to this center. These people are the best surgeons out there and not general surgeons. This is all they do.

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To those of you posting in this discussion I’ll be the first to admit that I don’t know much about parathyroid. I have a full plate keeping track of diabetes and thyroid issues. I know that calcium (too much or too little) and its impact on bone health is a concern. This is an endocrinology and a nephrology issue as well. My endocrinologist and my nephrologist monitor calcium and parathyroid things. What specialists are you using to take care of yourselves?

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@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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How is it diagnosed? My calcium has been 10.2 and I have thyroid nodules but they haven't mentioned this.

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Whats your PTH? It's done by blood test.

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Hi..the one I had on Nov 17 was 70.5 ...the reference range was 7.5 - 53.5. I also had a ct scan and I am having a Sestamibi scan today at 11am. My calcium level that day was 9.5. I also had the 24 hour UA test done also. Thank you for your note. Sincerely, Kitty2

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@sirene

How is it diagnosed? My calcium has been 10.2 and I have thyroid nodules but they haven't mentioned this.

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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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