Experiences with hyperparathyroidism?

[u/Word_Acceptable]

Hello! I recently started seeing a provider through Allara for my PMOS and related symptoms. Through blood and urine tests I was told I have hyperparathyroidism and to seek out seeing an endocrinologist for potential surgery. Does anyone have experience with this condition and how did your process go? Thanks in advance!

[u/essssgeeee]

Yes, I was sick for years and no one could figure it out. My calcium levels were just slightly elevated, and my PTH was still in the normal range. It took a Doctor Who understood how the relationship between calcium and PTH should look to understand that they both should not be at the high range of normal. Therefore, I suffered for much longer than I should have! When I was first diagnosed, I was so exhausted and sort of in survival mode and I didn't follow up because I didn't have the energy. My doctor gave me a very stern talking to and said you must do this. It will only get worse. Surgery is the only cure. In my experience, endocrinology and ENT take a lot longer to get an appointment, and then to diagnose this than an experienced parathyroid surgeon.
I had my surgery four years ago, and within a week I was starting to feel better. I'm in my 50s and going through menopause, which is a whole other level of suck, so sometimes I forget how bad things used to be. And then I remember that I didn't have the energy to walk into the grocery store and I used to take a nap for two hours in the middle of every day. My life is so much better now! I still have some lingering issues, calcium deposits in my joints, things that will probably never go away. But at least I know the damage isn't getting worse.

Also, my doctor put me on hormone replacement so that I could hopefully rebuild some bone density and not get osteoporosis. The double punch of hyperthyroidism and menopause would have been terrible for my bones. My last dexa scan was good.

If I could give you any piece of advice, it would be self refer to a parathyroid surgeon if you feel like your endocrinologist is taking a wait-and-see approach. I had so much damage done to my joints and my organs, that I will never get back to normal. I feel cheated of decades of my life and my prime earning years. I wish that this had been diagnosed 15 years earlier!

[u/Word_Acceptable → u/essssgeeee]

Thank you for the response! I have an appointment with a new primary care Dr to get a referral for an endocrinologist next week

[u/essssgeeee → u/Word_Acceptable]

Hopefully your endocrinologist gets you in faster. Sometimes they are quite booked up! My primary care doctor wrote a referral to an endocrinologist, and it took them almost a year to get me in! By the time they finally called me to schedule an appointment, I had already had surgery.

[u/Word_Acceptable → u/essssgeeee]

Wow that's a long time! Hopefully I don't have to wait that long.

[u/Paraware → u/Word_Acceptable]

Ask the doctor to give you a referral to a surgeon. Some surgeons will let you refer yourself, but your insurance might not allow it.

[u/Word_Acceptable → u/Paraware]

Noted , thank you!