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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@jennifer0726

@bobweller Please, where did you have your parathyroid surgery and did they check all 4? Thank you!

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I currently go to the Cleveland Clinic Foundation in Cleveland, Ohio. I started there in 2016 when I needed a second liver transplant. Prior to CCF, I used to to University Hospital's of Cleveland. The main campuses of both establishments are right down the street from each other. UH was a great place to. I like both healthcare institutions. In fact my family doctor is at UH and all my specialist are at CCF right now.

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@jennifer0726

@bobweller Please, where did you have your parathyroid surgery and did they check all 4? Thank you!

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Oh ya about checking all four, yes of course that is how they found the bad one. When they performed surgery they took a peak at the other three.

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Some surgeons only will take out the one they can see on the scan and not check the other 3.

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@jennifer0726

@bobweller Please, where did you have your parathyroid surgery and did they check all 4? Thank you!

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I had surgery October 30. The Sestamibi/4D scans located a target gland in my upper mediastinum below my collarbone. When that was removed, my PTH dropped to 22. Since getting that gland out of my chest through a neck incision took 3 hours AND my PTH had dropped that much, an exploratory was not done. If a target gland is located in your neck, a 4 gland exploratory is standard. If you are looking for more information there is a HyperPARAthyroidism Information Facebook group. I am in NJ so my surgery was done at Penn Princeton with an Endocrine Surgeon. Using an ENT when the adenoma was in my chest was NOT an option.

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