Post surgery weird update
Had my surgery 3/31. Before surgery intact PTH was 165.
Had adenomas, and 3 overproducing glands were taken.
Immediately post surgery, intact PTH was 28...
The next week it went up to 40...
In mid April, it was 96...
then up to 106 this month.
Calcium normal, phosphates normal, mag normal, nothing else unusual.
The doc called me asking if I had rickets (!). Said the PTH should not be that high without other levels being wonky too.
So she is suggesting genetic issues??? FGF23? Which makes no sense based on my other normal values...
I hate that the Endo doc was excited. Sick of being an anomoly.
Bone pain is HUGELY improved, anxiety/insomnia is worse, but I feel ok otherwise. Anyone have experience like this?
Editing to add I asked the doc if it could be from the remineralization. She said without any other values being raised it was not making sense, which is when she brought up other possibilities.
The bone pain was my worst symptom. They only tested my PTH because at 62, a Dexa scan showed me to have unusually severe osteoporosis and they wanted to see why. I was told my pain was "arthritis" for a decade 🙄.
Sadly, my careteam is.... not ideal, in that my surgery was scheduled/canceled/rescheduled three times. The follow-ups were canceled too, but NOT rescheduled. So, hence the surgery in March but no follow up visit until July.
So as much as I'm happy with no bone pain now....I definitely want to be sure everything is as it should be. Also, medically, I am a rare-shit-magnet of the worst kind (three, currently). So my reaction to the doc being excited about the 'mystery' was just EXHAUSTION.