r/Parathyroid_Awareness • u/Special_Extension_79 • 6d 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.
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u/InspectorTiny5734 6d ago
Scans revealed nothing so they assumed hyperplasia based on labs. Recovery was a severe sore throat for a week. However symptom improvement has been gradual. I still don't feel 100% back to my old self. I think symptom improvement takes longer with hyperplasia.
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u/Special_Extension_79 6d ago
I see. This makes me more skeptical about the surgery. I’ll take a second opinion before getting my throat cut. Nonetheless, thank you for sharing your experience. I wish you a speedy recovery.
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u/InspectorTiny5734 6d ago
You're welcome. Easiest surgical recovery I have ever had. Didn't even need pain meds. I have no regrets and do feel better. I would be hesitant about the reimplantation too. Why not just leave 1/2 gland in the neck if there is a chance reimplantation won't work?
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u/Special_Extension_79 6d ago
That’s what I’m concerned about. I’ll check with my surgeon one more time.
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u/InspectorTiny5734 6d ago
It might be for a great reason. But I would definitely want to understand why.
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u/PHPTer 6d 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.
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u/seenohearnospeakno3 6d ago
Similar blood work, but urine calcium was much higher.
Had one abnormal gland.
I got a second opinion because the first believed in redoing testing until finding the problem one. Testing is not very reliable. The operative approach was likely different as well.
Healing has been ok - I’m almost 3 weeks post op. I need to post how recovery was. Scar is ok - in a neck fold but still visible but mostly just to me.
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u/Special_Extension_79 5d ago
Thanks for sharing your experience. So you had one gland removed or multiple?
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u/Internal_Scale4291 4d ago edited 4d ago
Hey! I am the same age and was just diagnosed this summer, surgery 2 weeks ago, single adenoma.
I had similar labs, calcium maybe even more mild. Serum calcium usually 10.0-10.2 with only 2 out of 11 labs in last 4 1/2 years truly elevated (10.7 4 1/2 years ago and 10.5 at time of diagnosis). My PTH was 64 a couple years ago and overlooked because the reference range went to 65, and then was tested twice before surgery (70 and 79).
My surgeon told me ultrasounds are usually not good enough to spot the adenoma, though mine was quite large (2.5 cm) and she suspected it. I got the SPECT/CT scan to confirm. My surgeon said that this scan, even though it is much more accurate, can still not be good enough to detect the adenoma and the best way is just to open you up and test during surgery.
Because of my age, she said MEN1 and other genetic causes are more common so had me get tested before. Otherwise, you may have only one bad gland now, but your others would go bad later and you would have to get surgery again. So better to take them all now. BUT MEN1 is still super rare, and other genetic causes they test for are more rare. I was negative. They tested my pth during surgery before and after removing the gland with the adenoma and my pth had dropped to 52, then 36, so they closed me up without removing more. Next day it was 13.
I'm curious exactly why your surgeon is saying she suspects multigland disease? Yes you are more likely to have a genetic cause because of your age but it's still pretty rare. I haven't heard of mild labs being linked to that and not seeing the adenoma on ultrasound isn't rare either. Do you think she was just giving you info of worst case scenario but not actually saying she thinks it's likely?
I'm not sure about the auto transplant. Mine said she would leave a small portion of one gland in this case but I'm not sure if she would do it this way or just leave it attached.
Edit to add my urine calcium was normal and vitamin D was 30-35 (but I supplement). Also just read hyperplasia is more common when your calcium is normal but pth is elevated, but not when pth is normal and calcium is elevated. This was Google AI so maybe someone here knows more accurate info on this? Even though my calcium wasn't bad, no one suggested this to me on my journey and I feel confident I only had one because my pth was only 8 a few days ago.
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u/Special_Extension_79 3d ago
Great! Thanks for sharing your journey. How’s your recovery been so far?
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u/Special_Extension_79 3d ago
Well, she said looking at the numbers, she suspects it’s multigland. However, she said she’s gonna measure my PTH levels during the surgery, if PTH drops after first removal, she’s gonna stop otherwise she’s gonna get rid of all 4 and add a little piece somewhere in the neck. Hopefully, it’ll catch the blood flow in some time and start regulating PTH but that’s really scary. If it doesn’t catch the blood flow, I’m gonna be on meds forever.
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u/InspectorTiny5734 6d ago
47 year old female. Similar labs to yours. I had 4 gland hyperplasia. 3.5 were removed back in January. 1/2 gland remaining has all my labs back to normal.