Primary Hyperparathyroidism

[peaches29]

I've just been diagnosed with primary hyperparathyroid disease. My calcuim level was 11.1 and 10.6. when tested again. My 24 hour urine calcuim was 305.  My Parathyroid Intact number was 144.6.

I have 2 healthy kids now but would like to get pregnant again soon. My endocrinolist wants to do a wait and see approach with me since I'm only 30 years old and my sestambi scan was negative. She ordered a calcitonin test to test for MEN-2 but the lab never did it when I was there the first 2 times so she said let's just retest you in 6 months. When I asked her about getting pregnant again and what affects it could have on a fetus she kinda just blew me off saying I could have had this disease during both pregnancies before without even knowing it.

Is she correct with this appraoch?

[JonasP]

The short answer is no, she's not correct.

I'm not a healthcare professional but in the course of learning more about my own PPTH I've read quite a few scholarly articles, and I have to say that the decision by your endocrinologist to wait and see because of a negative sestamibi scan seems quite absurd. A scan (be it sestamibi or ultrasound) is *never* used to diagnose primary hyperparathyroidism; it's just to aid the surgeon prior to operation. Your blood tests are unequivocal. Your urine calcium rules out the rare FHH (familial hypocalciuric hypercalcemia). You have primary hyperparathyroidism. Period.

As to testing for MEN-2, if you don't have any relatives with the disorder the risk of you having it is minimal. How come she didn't order a test for MEN-1?

Getting pregnant while hypercaclemic can lead to neonatal hypercaclemia. But the solution is simple, tell your endocrinologist that you'd like to have the operation. Sure, you cannot have minimal surgery with a negative scan, but the standard transcervical operation is extremely safe, and the cure rate in the hands of an experienced endocrine surgeon is 95 %. Lastly, the NIH 2002 guidelines states that anyone under the age of 50 should have (would benefit from) an operation, regardless of symptoms and biochemical values.

[ChitChatNIne]

WELCOME to the COMMUNITY .. I am not well versed with your ? but wanted to stop by and say hello!

Cheryl

[Madisons_Mommy]

I couldn't help but reply to your post...you sound so much like me!  I'm also 30 and have a 2 year old daughter.  I have been pseudo-diagnosed with primary hyperparathyroidism without a good localization scan.  I'm being sent to yet another specialist for an intra-operative sestamibi scan.  Basically, your lab work says you have hyperparathyroidism.  That should be all they need.  You HAVE to be treated for this "disease" because the progression of it will most certainly lead to osteoporosis, heart trouble, etc.  

As far as the research I've done on being pregnant with hyperparathyroidism...BAD!!  It can cause pre-eclampsia, miscarriage, etc.  I'm wondering if I had this problem when I was pregnant 2 years ago..I had high blood pressure...never pre-eclampsia but I was hospitalized twice for HBP.  

Seek a second opinion.  The only way to treat this is the surgery route.  Good luck!

[Lori707]

I've been having serum calcium levels in the 10's and 11's for several years. My pth is high normal. Just went to an endo doc this week and he says it's possible I may have a parathyroid tumor. He's sending me for a 24hr.calcium urine test and a sestamibi scan. Also, he wants me to take a Cat Scan with contrast ???  My question is why the cat scan? I've just had a couple in the past three months and they give a lot of radiation. The doc also told me that I'm young (57)..that's young?...and I should have the operation if it is the tumor. I've lost 46lbs since mid-Feb unintentionally and have been sick. Just been diagnosed this week with rheumatoid arthritis and fibromyalgia. :(  

Question: Why would my doc want a cat scan?