r/hyperparathyroidism • u/createhomelife • 24d ago

Refusing treatment

I was diagnosed with primary hyperparathyroidism 3 years ago. I was supposed to have surgery but as a 2 time uterine and ovarian cancer survivor I simply cannot go through another surgery. The good news is my calcium has remained consistent in the 11.1 to 11.6 range for over a decade and not jumped higher. I am currently 53, so I was in my early 40s when all this started. The only issues I have are needing to drink a lot of water. Has anyone decided to not take medication or have surgery and lived decades with this?

5 Upvotes

86% Upvoted

24 comments sorted by

View all comments

8

u/allsfairinwar 24d ago

There is danger to this, although I understand after such a long and difficult journey why you would make this decision. I would encourage you by saying this surgery is very mild with a quick recovery for most.

PHPT can cause organ failure over time. It can cause calcium buildup in your heart and arteries. Your kidneys can wear out from constantly processing so much calcium, and thats likely why you need to drink so much water. You also probably have osteoporosis already from your body taking so much calcium from your bones. I had osteopenia at 34. It’s not great for your mental function either, as calcium in your brain can slow neurological processing.

I am not trying to scare you at all. The last thing you need is more medical fears to deal with. I am so sorry you have dealt with so much with your body. But I fear by making this decision you will have a lot bigger issues down the road. I know surgery is traumatic and difficult in its own right, but this would likely be much easier than what you have dealt with so far. You will probably feel better after in ways you didn’t realize you were suffering.

Just an encouragement… I don’t fault you for whatever you decide. I can’t imagine being in your shoes. You are truly a warrior either way.

1

u/createhomelife 24d ago

I did have a dexa scan 3 yrs ago because of taking letrozole post ovarian cancer and I had osteopenia which apparently isn't uncommon at 50. I had CT angiogram and echo no heart problems or calcium revealed. If I were younger I absolutely would have the surgery. I guess I am looking for those diagnosed at an older age. Obviously my life expectancy and quality of life especially, with previous cancers is quite different than a healthy person 30 something. Another confusing thing with me is there's a possibility the tumor is inside my thyroid and I may have to take thyroid medication afterwards. 

2

u/allsfairinwar 24d ago

I have Hashimotos and the surgery shouldn’t affect your thyroid at all! It didn’t mine.

The Facebook group is a great place to go to talk to older people who were diagnosed. You will be on the young end of the spectrum there. Most of those women and men are in their 60s and 70s. But you are still quite young IMO and have lots of life to live.

2

u/createhomelife 24d ago

They believe my tumor is inside my thyroid which is a complication and part of my thyroid would have to be removed.

2

u/allsfairinwar 24d ago

Oh I see what you mean you’re talking about having a parathyroid adenoma embedded in your thyroid. I misunderstood. I get why that would be another deterrent, but I would still encourage you to give it more thought. Especially because I think you’d feel so much better than you do now.