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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marceen | @marceen | Feb 11 4:22pm

I had it done all in one day...................doc for x-ray was a nuclear scientist doctor........I had one bad parathyroid and "all" others were check and put on a slide to double check. I have a photo of the actual tumor removed.
This is "all they do" and I had a surgeon from Yale and Harvard doc assisted. I am in Portland Oregon and before this "personal decision for surgery" my endo doc just said the "ultra sound" was non-conclusive. How in the world could a 1 inch tumor not be evident??? It is the radiology tracing that makes the difference. If you look at the Norman clinic web site there is a video of the operation and how they "find the bad little tumor" Total operation probably took about half an hour........prep too longer. I am well and glad I made the decision. My insurance covered it.........the flight is a deduction off my taxes...................but do check out the video.

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cmael | @cmael | Feb 12 11:03am
In reply to @jennifer0726 "Sorry long post, need info please. Hello @cmael, where did you have your parathyroid surgery? Was..." + (show)
@jennifer0726

Sorry long post, need info please. Hello @cmael, where did you have your parathyroid surgery? Was it at Mayo Rochester? Your user name looks familiar to me from the transplant group. I had a kidney transplant and bilateral nephrectomy at Mayo Rochester 12/2020. I have had high PTH and high blood calcium for many years (10?) and they had attributed it to secondary to kidney failure due to PKD. My levels did not go down, and put on very expensive Cinacalcet. Levels went down for a bit, but back up after I was taken off. At that time I suggested having surgery rather than pay $100/mo co-pay for Cinacalcet which only masks the problem. I had a nuclear PTH scan at Mayo last November and they could see adenomas on likely at least three of my parathyroids or at minimum both sides. I don’t have osteoporosis-bone density is normal. Tentative surgery for May/June at Mayo. I had read and watched video from Norman Center years ago. I know they are experts at minimally invasive and checking all four. I would like to know anyone’s experience at Mayo for this surgery. Thank you for your input. @katya12 I see you are being treated at UIHC. What is your status now? My family and I have a lot of history there. I live in Cedar Rapids. I am curious to know how you are doing and if they are treating your PTH.
My main question is whether Mayo is as good as Norman? I had a video visit with Dr Daniel Hurley endocrinologist at Mayo who is very nice, and surgery would be scheduled with a surgeon who specializes in this for minimally invasive, but he appeared to be saying the incision would be larger than I remembered from Norman’s video. I would have an ultrasound and tests one day then surgery the next day at Mayo Rochester. Thanks for your help!

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@jennifer0726 I had my parathyroid surgery done at United hospital in St Paul. MN. It was before my transplant surgery in 2018. I have an endocrinologist appointment at Mayo every year at the time of my annual checkup. My pth was 91 at my last visit April, 2023. My calcium was 10. 5 about 3 weeks ago. I’ve been told I may have another adenoma, but for now it’s just being watched. I have osteopenia.

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riflemanz64 | @riflemanz64 | Feb 12 11:13am

Did they check all 4 glands during your first surgery?

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1 reply
marceen | @marceen | Feb 12 12:05pm
In reply to @riflemanz64 "Did they check all 4 glands during your first surgery?" + (show)
@riflemanz64

Did they check all 4 glands during your first surgery?

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Norman clinic checks all 4...........with radiology and also a lab slice

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sirene | @sirene | Feb 12 10:10pm
In reply to @jennifer0726 "Sorry long post, need info please. Hello @cmael, where did you have your parathyroid surgery? Was..." + (show)
@jennifer0726

Sorry long post, need info please. Hello @cmael, where did you have your parathyroid surgery? Was it at Mayo Rochester? Your user name looks familiar to me from the transplant group. I had a kidney transplant and bilateral nephrectomy at Mayo Rochester 12/2020. I have had high PTH and high blood calcium for many years (10?) and they had attributed it to secondary to kidney failure due to PKD. My levels did not go down, and put on very expensive Cinacalcet. Levels went down for a bit, but back up after I was taken off. At that time I suggested having surgery rather than pay $100/mo co-pay for Cinacalcet which only masks the problem. I had a nuclear PTH scan at Mayo last November and they could see adenomas on likely at least three of my parathyroids or at minimum both sides. I don’t have osteoporosis-bone density is normal. Tentative surgery for May/June at Mayo. I had read and watched video from Norman Center years ago. I know they are experts at minimally invasive and checking all four. I would like to know anyone’s experience at Mayo for this surgery. Thank you for your input. @katya12 I see you are being treated at UIHC. What is your status now? My family and I have a lot of history there. I live in Cedar Rapids. I am curious to know how you are doing and if they are treating your PTH.
My main question is whether Mayo is as good as Norman? I had a video visit with Dr Daniel Hurley endocrinologist at Mayo who is very nice, and surgery would be scheduled with a surgeon who specializes in this for minimally invasive, but he appeared to be saying the incision would be larger than I remembered from Norman’s video. I would have an ultrasound and tests one day then surgery the next day at Mayo Rochester. Thanks for your help!

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You said that your calcium was high for years. Do you mind me asking what level it was? Thanks.

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jennifer0726 | @jennifer0726 | Feb 13 8:22am

@sirene It has ranged from 9-10.7 I think, with more often 10.2-10.7. High PTH/blood calcium is common in kidney disease. Unfortunately, my transplant did not fix mine as I have multiple adenomas on my parathyroids I found out in November at Mayo by NM PARATHYROID SPECT CT. (Nuclear test) In Dec. had a 24 hr. Urine Calcium which was low at 78.

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fluoride | @fluoride | Feb 14 4:03pm

kitty2, please don't put off having the surgery! The effect of continued high calcium affects so many major systems and will worsen kidney disease, osteoporosis , heart disease, gastrointestinal constipation, etc. It's extremely important that the surgery be done by an experienced surgeon and that he/she checks all 4 glands during the procedure. It is usually just a 20-30 surgery when done by an experienced surgeon, and it's an outpatient procedure. Anyone can download the CalciumPro app to their phone to get a wealth of information about parathyroid disease and its treatment. I had the surgery and it's a quick recovery for most people and my only regret is that I didn't have it earlier. Good luck!

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1 reply
fluoride | @fluoride | Feb 14 4:12pm
In reply to @fluoride "kitty2, please don't put off having the surgery! The effect of continued high calcium affects so..." + (show)
@fluoride

kitty2, please don't put off having the surgery! The effect of continued high calcium affects so many major systems and will worsen kidney disease, osteoporosis , heart disease, gastrointestinal constipation, etc. It's extremely important that the surgery be done by an experienced surgeon and that he/she checks all 4 glands during the procedure. It is usually just a 20-30 surgery when done by an experienced surgeon, and it's an outpatient procedure. Anyone can download the CalciumPro app to their phone to get a wealth of information about parathyroid disease and its treatment. I had the surgery and it's a quick recovery for most people and my only regret is that I didn't have it earlier. Good luck!

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also if you go to the Calcium Pro app which is provided by the Norman Parathyroid Center in Tampa, you will see that it's normal for serum calcium levels to go up and down, but that if you are over a certain age (50 maybe?), your calcium should be less than 10. Watching the situation every 6 months caused my kidney function to decrease and I progressed to osteoporosis from osteopenia in a period of 18 months!.

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bobweller | @bobweller | Feb 15 2:00pm

I was diagnosed with osteoporosis after a bone scan around 5 to 6 years ago. I have both an Endocrinologist and a RA doctor I follow. The Endo doc started Prolia shots around 4 to 5 years ago and Oral Calcitrol. Plus I take extra calcium supplements too. As we did calcium and Tyroid blood work check how things are going, the Endo doc discovered I had parathyroid problems that was affecting how new calcium levels were irradic. So I had a parathyroid scan and ultrasound by a surgeon. I had to have one of the four parathyroids removed. It was a 30 to 45 minute surgery and the cut was about 1 1/2" cut. It's not even visible today. I had this done around 2 to 3 years ago. Doing much better.

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jennifer0726 | @jennifer0726 | Feb 16 1:50pm

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

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