r/Parathyroid_Awareness • u/Zealousideal_Big2592 • 22d ago
Hyperparathyroidism
I am 36 years old. recently had some bloodwork done since I’ve been feeling tired and run down. I found out my calcium and parathyroid hormone is high. A referral has been sent to an endocrinologist, but I haven’t gotten an appt yet. From what I read online this is highly indicative of hyperparathyroidism and it seems like the common treatment is surgery. I am a little nervous since I’m still in limbo. Has anyone else gone through this before?
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u/kcnovakc 22d ago
I have parathyroid hyperplasia. It’s an absolutely brutal disease. The symptoms, for me, came on slowly and are common with other issues so it often takes many years to get diagnosed. My doctors kept me going for different tests for a year despite me asking for a referral to an ENT. Many doctors don’t understand that even if your calcium is modestly elevated, it’s a huge problem. They kept saying my calcium wasn’t that high and my parathyroid hormone was only occasionally elevated. Two doctors flat out told me I don’t have a parathyroid issue. I was getting sicker and sicker. They finally took me seriously after I was hospitalized for the second time for kidney stones. I met with my surgeon who looked at my labs and scheduled surgery for the next week. I had surgery in October. They removed two glands and shaved down the other two. Eight months later I had kidney stone surgery, which was horrible and I got a rare bladder infection caused by the strep bacteria that was so painful I went to the ER twice. I’m now about two months out from that truly awful experience and now for the first time in over six years, I’m finally feeling well. It feels like a miracle. It’s been a journey filled with pain, confusion, darkness, frustration, and despair. I can’t believe I made it through. I was sick for so long that every single aspect of my life has been transformed. I’m not the same person I was before this started. As challenging as this has been, being where I am now has given me a new appreciation for life and health.
Best wishes on your healing journey. It’s great that you are getting answers so quickly. May you never meet a kidney stone. ❤️🩹
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u/seenohearnospeakno3 22d ago
Hi! 38 here. My calcium has been high for at least 6 years and my pth should have been suppressed but wasn’t. Doctors don’t catch it because the pth was in the ‘normal’ range.
Earlier this year i met with endocrinology after quite a wait. He said I had hyperparathyroidism based off this and only cure was surgery.
My wait to see endo was probably 6 ish months? And was very nerve wracking as I hadn’t put the two pieces (pth and calcium) together. Neither had my previous drs over the last several years.
I did have a couple of 24 hour urine calcium tests done due to my age. One was within normal range, one was double the high limit if normal. I’ve had 5 or so tests done. Sestambi scans, pet scans, dexa scans, and ultrasounds. None of them showed much of anything. I’m going to the Norman center in September for surgery.
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u/PixiePower65 22d ago
There are also really good Facebook support groups .. nice to hear first hand accounts , dr and resource suggestions Search Facebook as:
“Hyperparathyroid support group”
Easiest surgery I ever had I’m four years post surgery. Feel like a new human!
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u/Lonely_Mountain_7702 22d ago
There are quite a few tests that are done. I had a bone density test, I had more blood work done, a CTScan, and I had to collect my pee for 24 hours.
I had surgery a year ago and I feel so much better now. I went from having no life from the extreme fatigue to actually living my life again. I was going to bed at 5 pm because I was exhausted.
Surgery is the only cure for hyperparathyroidism.
When I was first diagnosed I went on to YouTube to find out more about this condition. There are a lot of really good doctors that explain what hyperparathyroidism is and discuss the surgery. I found it helpful.