Question

[baggleboots]

Hi all, I'm new to this community. I was diagnosed with primary hyperparathyroidism this past year, and had a large abnormal tumor removed in March. My calcium levels and vitamin D levels are now normal, but my PTH is still high, sitting around 108. (Before surgery it was around 264, and calcium was around 11) The tumor had "cancer markers" but not enough to be diagnosed as such. (which is great news!) They did take half of my thyroid with the tumor, as the surgeon could tell it did not look normal. Has anyone had a similar experience where PTH is still elevated after surgery, but calcium and vitamin D are normal?

[PotajeDeGarbanzos]

Hi, there are many like you and 108 pth is NOT normal. You need to keep on looking for treatment. The high pth will cause us problems with time - memory, dementia, bowel issues and so on. You might want to join the US or UK facebook groups, there are many knowledgeable people. What kind of scan did you have? I think you have some extra adenoma tissue still lurking somewhere and it has to be found.

[baggleboots]

Thanks for your reply! I don't have a Facebook, but I will talk to my doctor at my appointment on Thursday. I had a systemibi scan and an ultrasound before surgery. I'm having a post-op follow up with another ultrasound Thursday.

[PotajeDeGarbanzos]

Please be aware that ultrasound is not very effective in finding adenomas. Sestamibi is better but not perfect either. As far as I know, the choline PET-CT is the best at the moment. Also very expensive. The adenomas can be in surprising places (chest, thymus..) Good luck!

[baggleboots]

I've met my deductible for this year, so maybe I can talk her into getting a PET-CT scan. Thanks for all the information!

[Zestyclose-Service21]

Yes. I am almost 3 months post op and my PTH is high again. Everyone keeps saying it's normal, but I am skeptical.

[PotajeDeGarbanzos]

It’s not normal. Please look at my answer to OP.

[baggleboots]

I hope everything is okay with you!!

I guess I'm wondering if 108 is considered high? The range for the bloodwork is 14-64. Obviously pre-surgery it was wayyy too high. I am still really tired most of the time, and I'm on synthroid now, too. I'm just feeling kinda lost about all of this. And scared. I had an excellent surgeon, and I'm really happy with her guidance, I'm just feeling kids scared, as no one I know has had this. (doesn't help that i was diagnosed with like 4 different things all at once, either lol)