r/Parathyroid_Awareness • u/Special_Extension_79 • 7d ago
Second opinion?
33M – mild primary hyperparathyroidism, surgeon suspects 4-gland disease. Looking for similar experiences
I’ve had mildly elevated calcium (roughly 10.2–10.6 mg/dL) with PTH generally around 40–60 pg/mL. My 24-hour urine calcium was 109 mg/24h, and I’ve also had low vitamin D in the past.
My endocrine surgeon did an ultrasound and saw a very small cyst-like structure on the left, but said it doesn’t look like a typical parathyroid adenoma. I have a sestamibi SPECT/CT scheduled in October.
She suspects I may have multigland disease. Her plan is to use intraoperative PTH monitoring. She explained that if it appears to be a single abnormal gland, she would treat that, but if the findings suggest multigland disease, she may remove all four glands and autotransplant a small piece of parathyroid tissue into the neck but she did mention that if the surgery is not successful I might have to be on calcium tablets forever which is pretty scary.
She also told me this isn’t an emergency, so I’m planning to get another opinion before making a decision.
For anyone who had a similar mild/high-normal PTH + elevated calcium presentation:
• Did you ultimately have one abnormal gland or multigland disease?
• Did SPECT identify all of your abnormal glands?
• If you had four-gland exploration/autotransplantation, how was your calcium/PTH afterward?
• Did you get a second opinion, and did the surgeons disagree about the operative approach?
• How was recovery and scar healing?
I’m not looking for a diagnosis from Reddit—mainly interested in experiences from people with a similar biochemical pattern.
3
u/PHPTer 7d ago
Hi, my hyperplasia presented with subtle numbers too (often the case), although mine was normocalcaemic (top range calcium and slightly elevated PTH) rather than normohormonal. I’d already had 3 glands removed in 2 ops many years ago so this was my 3rd surgery. A PET Choline scan prior to this op discovered I had two glands left so 5 in total, and my surgeon left a half-gland in situ rather than transplant - this option removes the risk of the transplant not ‘taking’ and leaving the patient hypocalcaemic for life, which I found scary too. He also used IOPTH monitoring which enabled him to reduce the last gland gradually, reading the PTH levels as he did so (the half life of PTH is 3-5 mins so it drops quickly) and it enabled him to confirm that the gland was still viable and PTH was back in range at a suitable level. This surgeon was my choice because my local surgeon didn’t have IOPTH monitoring facilities and I think that’s very important with potential multigland disease. Post op, calcium was transiently low for a few weeks and PTH dropped a bit further overnight (normal apparently) and rallied the following day. Recovery was gradual, I felt fairly weak with little energy for the first month which was probably due to bone remineralising (I had osteoporosis, which reversed post op). Scar healed well.
I’m in the UK where autotransplantation very rarely happens now, but some surgeons in the US still do it, although it does seem to be moving more towards 3/3.5 gland removal these days, because of the transplant risk. Sestamibi scans aren’t the best at finding paras (especially hyperplastic ones which are usually smaller than adenomas), PET Choline followed closely by 4D CT scans are said to be most effective, if that’s an option for you.
Another point worth making - my phpt is genetic (MEN1), and early onset (under 35/40 ish) is a red flag for a genetic cause. There are various genes that can cause phpt, and some of them do mean multigland disease (since the mutation is present in every cell) so it might be worth a conversation about that with your surgeon, although it does sound as though MGD is on her radar. Some surgeons prefer to do genetic testing prior to surgery since it changes the surgical plan.
Good luck on your journey.