PTH high after third infusion, can't find a competent endocrinologist to consult

[Oldie68]

My PTH (parathyroid hormone) turned out to be quite high: 167 after my second chemo. Has never before been tested. Not sure what to make of it. My MO doesn't know what to do, partly because calcium and potassium levels are still ok. My endo is out of the country and I was told he doesn't treat high PTH. Finding a competent endocrinologist turned out to be problematic. I am hypothyroid since 2017 with Hashimoto which is under control with Levoxil and Liothyronin. Online search for PTH shows some pretty dire consequences (liver failure, kidney decease, surgical removal of the parathyroid gland) and little available in terms of treatment. Has anybody had this problem before? What did you do? What was the outcome?

[Tall_Allen]

What is your serum Vitamin D level? Your bone mineral density on a DXA scan? Your urinary calcium level? I hope you're avoiding Vitamin D.

[Oldie68 in reply to Tall_Allen]

My 25-OH vitamin D level is 37 ng/mL. Not sure what the "serum vitamin D" level is or means. It was 28 back in January when I was first diagnosed with metastatic PC. Normal range apparently is 30-100 ng/mL. I am taking daily 1000 IU (25 mcg) vitamin D3 every day at the recommendation of my oncologist. Bone density is 0.83 (neck) 1.4 spine, 1.04 hip (all in g/cm2, not sure why this unit and not g/cm3). Ca level is 9mg/dL. Urinary calcium level has not been measured at all as far as I remember. Vitamin D is important fro my Hashimoto and in general for the immune system. If it was high, I would stop taking it, but it is close to the lower normal limit.

[Tall_Allen in reply to Oldie68]

BMD is usually given as T scores on a DEXA scan. They are + if above average, - if below average.

[Oldie68 in reply to Tall_Allen]

I see. T is 1.4 for spine, -0.7 for left femoral neck and 0 for hip. Looks normal, since all are > -1. Thank you for educating me!

[Dett]

My husband’s experience - his calcium readings at diagnosis of APC and thereafter were above normal, and his MO suspected a parathyroid problem. She directed him to an endocrinologist who tested his PTH level, and it was high (but not nearly as high as yours). The endocrinolologist had him undergo an ultrasound, which revealed a (almost always benign) tumor on one of the four tiny parathyroid glands. He was advised that removal was not critical. We were still processing the shock of the PC diagnosis, so we didn’t do anything at the time.

Lately, however, my husband’s MO has been encouraging him to pursue treatment. The only treatment for primary hyperparathyroidism is removal of the tumor. Unfortunately, there are very few endocrinologists who specialize in this very delicate surgery. One of the best known appears to be the Norman Parathyroid Center in Tampa, Florida. Husband will be consulting with the local endocrinologist, and will probably go to Florida for the outpatient surgery in the near future.

I have no medical background (and I defer to anyone who does), but it would seem to me that since high PTH could easily be the result of a parathyroid tumor, the easiest way to narrow down the cause of your high PTH would be to have an ultrasound to see if a parathyroid tumor is the source of your problem. Please keep us posted on your experience.

[Grandpa4]

When the calcium is normal it is not usually a parathyroid tumor although it can be. The cause is usually vitamin D deficiency and kidney insufficiency. What is your creatinine.

[Oldie68 in reply to Grandpa4]

Sorry for the late response. My creatinine level went a little bit down from about 0.98 before starting chemo in February to 0.87 (latest reading a week ago). It is still within the normal range (0.5 - 1.3) mg/L.

I finally spoke with an endocrinologist and he wants me to do urine test for calcium. We didn't discuss ultrasound for the parathyroid gland. I will ask about that next time I speak with him.