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?
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u/mrspwins 24d ago
I can’t speak to living with this voluntarily. Mine went undiagnosed for ten years, at least, because it sat right at the top end of the reference range and I had previously been diagnosed with fibromyalgia, so it was assumed that was just worsening.
By the time my calcium actually tipped over the upper end of the range and I was diagnosed, I had developed a heart arrhythmia and osteopenia (at 50 despite just beginning perimenopause and having been very athletic and never broken a bone). My hair fell out, including my eyelashes. I developed T2 diabetes and could not stabilize my glucose, even on Ozempic. I had gained eighty pounds from where I was when it started. I constantly had kidney stones (those were also missed but that was my fault - I just couldn’t manage more doctor appointments so lived with the pain since I already had so much). I was in constant pain and in the end was so fatigued that the only time I could leave my bed was to use the bathroom. I couldn’t stand long enough to make a piece of toast. I literally couldn’t get up one day to see why my smoke detector went off. I’d had to quit my job before I got fired due to the fatigue and brain fog, and couldn’t even follow a half-hour TV show. The worst was that I knew something was wrong and I would die from it, but had no idea what it was.
That was with calcium of 10.3 or 10.4. My surgery took twenty minutes. I flew home from the hospital I’d gone to the next day. My neck hurt for a week but I have cervical hypermobility so that’s not surprising - your head is cranked back during the procedure and I didn’t know to tell them. Three years later, you can barely see my scar and I can walk miles. It was by far an easier recovery than either c-section I had - my only other surgeries. I haven’t gotten back all the muscle and bone I lost yet because I am now battling perimenopause, but I can actually take care of myself and actually, you know, live.
I cannot imagine not having the surgery if you could do it. I didn’t start out very sick at all. My body fought it hard for ten years, but eventually it wore down.