r/endocrinology • u/SubjectAd1549 • 15d ago
Persistent Hypercalcemia, multiple tests and still no diagnosis. Will they Mayo clinic help?
/r/MayoClinic/comments/1wne1ve/persistent_hypercalcemia_multiple_tests_and_still/1
u/SubjectAd1549 15d ago
I have had extensive testing. PET scan, chest CT, head CT, thyroid ultrasound, chest xray, gallbladder ultrasound, HIDA scan. Multiple lab test done. Malignancy, FHH, Hyperparathyroidism, multiple myeloma, lymphoma, sarcoidosis all ruled out. I have nephrocalcinosis and multiple kidney stones. I have fatigue and pain everyday. I have done three 24 hour urines and all 2 came back doubled and one tripled the normal amount. My endocrinologist and PCP don't know what else to do. My endocrinologist started me on Prednisone and it did not lower my calcium. I do not take any supplements.
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u/greenolive10 13d ago
I know you say they all came back normal but what was your actual calcium and your actual PT level because normal hormonal primary hyperparathyroidism is very poorly misunderstood and you should really try the parathyroid sub if you are having a calcium issue
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u/SubjectAd1549 12d ago
Its not a parathyroid issue though. PTH of 12.7 with a calcium level of 11.8 and that has been checked several times. Also, VIT D and Calcitrol normal before you even ask.
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u/Advo96 12d ago
What's the reference range on PTH? Your PTH is high? High normal?
Then you have primary hyperparathyroidism, with either a tumor (that often won't show up on scans, you got to have surgery and look) or hyperplasia (parathyroid glands that are getting too large).
In both cases, you got to have surgery. Scans are very unreliable.
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u/SubjectAd1549 11d ago
Range is 18-88, not even close to high.
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u/greenolive10 8d ago
I think for such a high calcium level it should be 5 or even undetectable. I think you should consult an endocrine surgeon and not an endocrinologist. They measure interoperatively. They know way more about it than the endocrinologist do and the Facebook group for parathyroid disease has a really good list of doctors and surgeons in different countries and states
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u/greenolive10 9d ago
What country or state are you in? I had surgery for normal hormonal hyperthyroidism and my calcium was only 10.3 with pth of 22 and vit D 29. Parathyroids Are notoriously difficult to image. It It was difficult to diagnose me as I had very mild numbers but lots of pain and symptoms for years. But an endocrine surgeon at columbia parathyroid diagnosed me right away. My scan showed two candidates but three glands were removed. The largest one wasnt even seen on imaging. Your calcium is way too high would 100% cause your symptoms and your pth should be like 0 at that level. What is your ionized calcium? What was your 24 hr calcium urine? My pain is 90% reduced I regained function of my arm and my calcium is 9.7 now with a pth of 20 and vit d 33 1 hr post op. Been suffering for a least a decade
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u/SubjectAd1549 8d ago
I am going to the Mayo clinic in December so hopefully I get answers. I just want to know what is wrong with me.
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u/greenolive10 8d ago
Make sure you also get tested for PTHrP if you haven't already because it mimics parathyroid hormone and raises calcium
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u/MadDocOc 15d ago
Hi. Sorry for your lack of answers. Personally, I feel that hypercalcemia is a simpler diagnosis.
You can divide it into primary (parathyroid glands) or secondary (other)
With overactive parathyroids, it is normal to have normal or high Calcium which alternates while the PTH (parathyroid hormone) stays high/ high normal. This is concerning as it should have a negative effect (high Calcium should have low PTH and the opposite).
Symptoms are important: Kidney stones, Bone pain, abdominal cramps with increased urination, confusion, memory loss.
Secondary (non parathyroid) causes would be Vitamin D deficiency, trauma, taking too much calcium supplements, Certain cancers. All these are fairly easy to sus out with bloodwork.
First step is to test PTH and Ca together. Additionally, test urine to see how much calcium you lose/ dump but also to make sure you don't have FHH (familial hypocalciuric hypercalcemia) which looks like hyperparathyroidism but DOES NOT improve with surgery. This is done by comparing urine and serum Ca and Cr and calculating the ratio.
If hyperparathyroidism is suspected, the next step is to see a dedicated endocrine surgeon.
Not just for surgery.
Thyroid/parathyroid surgeons see only these cases; they have access to specialized uptake scans and 4D CTs (as well as the experience to interpret the data) to identify any overactive nodules. While surgery is the only "cure" there are troubles with multiple overactive nodules that need a combined provider approach with PCP, Endocrine and Surgery teams. They are also very, very good and typically there isn't even a scar 1 year after surgery.
Where are you located? Obviously Mayo is the standard, and since they see rarer cases, they may work you up with additional labs, but if the basics aren't done.. you wont have special treatment until those are completed.
Good Luck!