unsucessful parathyroidectomy for hyperparathyroidism

[erinlouise31]

My doctor noticed that my calcium and PTH levels were very elevated last year. I had not been to a doctor in several years as I did not have insurance. After many blood and urine tests it was determined that I had primary hyperparathyroidism. I saw 2 specialists and a surgeon who specializes in parathyroid surgery. It was recommended that I had a parathyroidectomy. I had the surgery 3 weeks ago. When the surgeon opened my neck he found one parathyroid Adenoma but was unable to find any other glands even after biopsying several times. After the surgery my calcium drropped slightly and with in one day was up 1.1 it has continued to stay at that level. My surgeon believes that I may have a gland in my chest but they are unable to see it. What do you recommend that I do? They tell me that the drugs used for secondary hyperparathyroidism are not effective on primary hyperparathyroidism. I do have most of the symptoms of hyperparathyroidism , Very high anxiety issues, depression, bone pain, headaches, heart palpatations, forgetfulness, lack of concentration, low energy, very tired. I am afraid to have them just poke around my chest for these missing glands and yet I don't feel well and am getting worse.

[juli0212]

Hi there~!  Sorry to hear of the unsuccessful parathyroidectomy.  My parathyroidectomy was done in 2002, with the parathyroid gland with grape-sized benign tumor found towards the left breast!   I am currently having problems with HIGH PTH levels (*878*) and NORMAL calcium (9.2).  My surgeon at the time (I've since moved and she's retired) had said she'd FOUND the other 3 glands and they were understandably very very tiny.  SO, that said, it's still possible that since I now have primary hyperparathyoridism AGAIN after 6 years, and having gone thru breast cancer and treatments as well since 2006...that the first surgery was NOT successful either in my case.  We both just have to be very vigilant on our OWN health, as no one else will.
I am pursuing this STRONGLY now as it's now been almost 2 years of EXtremely high PTH levels, normal calcium...SOMEthing is up for sure....sestamibi scan in Jan. (but it didn't find my tumor in 2002)...so will see endocrinologist before scan, we need to figure this out like ASAP!  Have NO clue what it's doing, but yes, have the anxiety issues that started during radiation (1/07), when my pth levels started rising, loss of concentration, daily migraines, nothing was resolved during my parathyroidectomy in 2002, other than extreme joint pain:  psueudgout was dx'd for MONTHS I cried walking up or down stairs.
BUT, I push thru, as I'm mostly alone, but disabled also.   BEST of luck to you, keep us posted?  Send a pm if you like....juli

[Thypatient]

Oh, that's awful.  Does the surgeon want to do another surgery?  I think you might have to get several medical opinions.

There was someone on this forum who was going through a similar situation.  I hope he/she sees this and posts something.

I will share anything I come across with you.

You have my ear and support.  Keep in touch.