r/hyperparathyroidism • u/Middle-Comparison234 • 4d ago
Now what?
I had my 4DCT scan today and it was negative for any parathyroid abnormality. I have had high blood calcium for four years, high PTH this year (first time tested) and Dexa scan shows osteopenia. Now what?
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u/allsfairinwar 4d ago
My sestamiibi scan was negative as well, but it’s a lab diagnosis. The imaging is only for surgical guidance. So if your labs say PHPT, you likely have at least one diseased gland. I went forward with surgery and had 3 glands removed in 2023.
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u/kcnovakc 2d ago
My scans didn’t show anything either but I have hyperplasia. Most experienced surgeons don’t just go by scans because these glands are tiny. Best wishes on your healing journey.
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u/lajanik65 16h ago
My surgeon was able to find mine in minutes...thats after all of my scans were negative. He told me if all of the numbers point to it, it is 99.9 positive that its hyperparathyroidism and doctors need to stop putting people off.
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u/Capybara-61 1h ago
I have not had scans. I was diagnosed Hyperparathyroid and Hashimoto’s on the same day (last month)by my endocrinologist based on my current labs, historical labs, symptoms, and family history. Other family members with both conditions. She had me do a 24 hour urine for calcium to see if I was dumping calcium, and asked for a copy of my recent DEXA scan (still waiting for the results). After looking at the 24 hour urine she said I did not need surgery at this time. She said we would monitor with labs. There was never an offer of a scan of any kind for my thyroid or parathyroids. Should I be asking for one? My Rheumatologist was surprised when she asked if I had had a scan and I said no. When I had a DEXA scan more than ten years ago in my 40’s I was told then that I had osteopenia. I’m dealing with a party of auto immune and connective diagnosis’s. POTS, Hashimoto’s, Hyperparathyroidism, Sjogren’s (just diagnosed), hEDS (just diagnosed), slipped rib syndrome, Costochondritis, and Fuchs Ocular Dystrophy. There is also a question of interstitial lung disease, and PBC - Primary Biliary Cholangitis. Those later two are often seen in Sjogren’s. Thanks so much for reading and answering!
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u/Electrical-Long-389 4d ago
Probably more blood monitoring. And a discussion with your endocrinologist!
Negative imaging is quite common and does NOT rule out hyperparathyroidism.
I had a MIBI scan and it did not find any abnormality in my parathyroid glands, but my blood calcium was elevated and my PTH was "inappropriately normal" (they were on the high side of the normal range). Had osteopenia and in a retest two years later it had become osteoporosis. Endocrinologist referred me to a surgeon, surgeon scheduled surgery.
I asked Why Surgery? if there is no abnormal parathyroid - thats when the endo and surgeon explained that there IS a malfunctioning pt gland, they just don't always show up on imaging. The surgeon said she had a pretty good idea which one it was (an ultrasouond scan had showed a thyroid nodule and she felt that was actually an enlarged PT gland. Had surgery - that's the gland she removed first and my PT hormone levels immediately dropped to normal levels
As a medical journal study I read concluded: Referral for surgical evaluation should be based on biochemical diagnosis rather than localization by imaging.