Mother with Hyperparathyroidism

[Gann11]

I am a mother (35) of an infant (7 months) and I have been diagnosed with Hyperparathyroidism - I have had a 24 hour urine catch w/ elevated PTH, several instances of hypercalcemia.  Diagnosis is primary hyperparathyroidism.  My child was born in July 07, and in August 07 I was hospitalized with suspected kidney stone.  I looked back at blood-work done prior to pregnancy and found a case of at least one instance of hypercalcemia.  Doctor suspects I had hyperparathyroidis during this pregnancy.  I am very lucky there were no complications with delivery.  Infant had high respiratory rate during first day after birth, but now seems normal.  Is there any recommended test or bloodwork I should have done for infant to make sure either his parathyroid wasn't damaged or for other issues like Vitamin D deficiency.  I am currently taking Vitamin D, as I was also diagnosed w/ Vitamin D deficiency post-partum.
Thanks,
- worried about baby

[Deanna L Aftab Guy, MD]

Glad to hear you are in excellent hands

[Gann11]

Thank you. PTH hormone was extremely high, I don't have the number.  Calcium was 11.3, 11.2, and 11.4 on seperate occasions.  I have just had a Parathyroid Scan, waiting for results.  Will be seeing an endocrinologist / surgeon in April.  Can't get an appointment sooner because he's a top-notch surgeon and very busy - but worth waiting for because if I have to have surgery, I've been told, he does these in his sleep.  The only reason I got this far in the first place was that I told my family physician I was too tired and that it was more than what I should be, even with an infant and a 2 year old.  He did thyroid and blood work-up and that's when the hypercalcemia was discovered along with a look back at my records.  In any case, I am worried about my infant (worried mother, can't help it) and will insist that I get his calcium checked until I see the Endocrinologist in April.
THanks.

[Deanna L Aftab Guy, MD]

I would make sure first that you are in the right hands. Sounds like things have been monitored thoroughly with labs and urine. Sometimes what appears to be an overactive parathyroid may be a thermostat that is not working, meaning that it takes a higher level of calcium to shut off the parathyroid hormone production, this is a calcium sensor disorder.
Hyperparathyroidism needs to be evaluated carefully to find an adenoma or tissue producing this excess hormone. The imaging may consist of an ultrasound, CT scan, MRI or a contrast study that is very specific called a sestamibe scan. This is very important as the treatment is very different depending on the cause, if it is an adenoma and you have kidney stones then the treatment is removal, if it is a calcium sensing disorder NO surgery should be done. Also there are what is called multiple endocrine neoplasia syndromes-in which hyperparathyroidism may be part and thyroid or pituitary or pancreatic problems or even adrenal problems may appear later. So an endocrinologist is very very important in your life!
Now in regards to your son, if he has a simple calcium level checked that should be fine until your exact cause is determined to see if it is genetically related.
You need to be followed by an endocrinologist and if your baby has problems they can refer you to their pediatric endocrine friends.  Hope this helps