Anybody with High PARATHYROID/normal calcium?

[juli0212]

Seems this forum is mostly about thyroid problems, understandably.  But, we DO have patients with PARATHYROID disorders.  I am hypothyroid, so yes, I have thyroid issues as well...that is being treated successfully with levothyroxine, low dose of 25mcg.  
My problem, and I'm not getting responses by posting daily, so I'm guessing there are NOT ALOT of parathyroid patients out there:   HIGH PTH of between 323 and 878 for 2+ years now...NORMAL CALCIUM (9.2)...previous history of primary hyperparathyroidism/parathyroidectomy in 2002/removal of one gland w/grape-sized benign tumor in the CHEST...dx:  breast cancer/IDC/2006...PTH levels SPIKED AFTER regimen of RADIATION 2 years ago....have been extraordinarily high since.  I have asked radiation oncologist/oncologist/endocrinologist/surgeon if RADIATION could have spiked the levels, they all say "NO, the parathyroid glands are NOT IN THE CHEST"...I beg to differ, obviously~!   I have no kidney issues, no bone pain, bone density/bone scans are normal/urinealysis normal.  Vitamin D level is fine with supplements (previous deficiency years ago).  ANYBODY with similar problem?  I'm thinking not...or I'd have heard?   CAN RADIATION SPIKE the levels of PTH, and if SO, what does one DO about it?  Surgical exploration (Sestamibi Scan did not find ANY parathyroid glands or obviously, no tumor as calcium is normal) for the 'damaged' parathyroid gland(s)?????   It's a puzzle, and am awaiting *STAT* bloodwork for the PTH and regular PTH re-tested.   ANYBODY???   thank you...juli

[philsyl]

I had a parathroid turmour removed in 2006 now my parathyroid level is high but my calcium level is normal, I have all the symptoms as before the removal of the tumour, but waiting for results to see if I have another one or may be vitamin D deficient or so I am told.

[stella5349]

Gosh Juli - I don't have any personal experience on this for you. I suspected parathyroid disease a while back and did some checking on causes and conditions associated with it - but it turned out negative for me.

WHat I remember reading about it seems dead on to what you are talking about and I remember a few things.

Parathyroids - most are in the area around the thyroid but they can be where you describe.  Sestambi scans are not always best indicators of issues, and calcium levels can titer the normal mark, yet a person can have severe issues and this disease is harder to get a Dx for than any thyroid issue persay.

There was some personal interaction with some people not so long ago that did have parathyroid disease and would talk first hand about their experience. Hopefully members that have more information than me will come see this and post.

I hope this helps some. I hope somebody come on that knows more on parathyroids.

Did you visit the parathyroid.com site at all? I think it was there I also read that in rare cases 2 glands can be diseased and it can be missed thinking only one was the problem - when in fact two or three can be problems for some.

Is this what your doctor is saying too? Did you happen to view over on the breast cancer forum and ask this over there too?