High PTH, and was born with Idiopathic Hypercalcemia - anyone else?

I was only the sixty-ieth-odd baby to be diagnosed. Was pretty much sick for the first six months of my life. After diagnosis I had a special diet (still the have the green book somewhere) and eventually started to thrive.

Fast forward to now (aged early fifties). I've felt off and ill and generally not good, including fuzzy headed and ouchy, for some years. Last year I went to the NHS GP. Did a blood panel and all returns okay, so no further forward. Still feel rubbish on a daily basis. Go back and the next NHS GP says only low-ish Vit D, so prescribes high strength Vit D. I checked the info paper - don't take if have calcium issues, so I check with NHS GP. Have your calcium checked he says, but no further discussion. I got a bit worried, and I'm sick of feeling sick, so I mortagaged an arm and a leg and went to see a private GP and have bloods done. He came back with a PTH of 94 and tells me I need to get it followed up.

I went back to the NHS, as I've paid a lot in and I really would rather not have to sell my lorry to pay for an operation. NHS GP was quite positive, once we'd got past the 'who is the other doctor' piece and ordered another blood test. I felt hopeful that he wasn't going to be like the ones I'd read about, until he said "It's only slightly raised", at which point my heart sank - if there's a range it means that anything above it is wrong!

Anyhoo, tomorrow is 'results of blood test day' and I am stressing ever so slightly. Is it going to be a fight? Is the wonkiness I was born with a normal thing in this world of parathyroidism? Does anyone have any wise words of wisdom?

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