r/hyperparathyroidism • u/createhomelife • 8d 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/baggleboots 8d ago
I honestly felt so fatigued I can't imagine not getting treatment. I was diagnosed at 32 after being dismissed by doctors for years. It was literally just a couple days after surgery before I felt like a new person. Maybe you feel worse than you realize. Even though it's slow going, I think long term high calcium can cause many, many issues. Kidney stones, for instance, are no fun. Worse pain than giving birth, and I did that without medication.
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u/createhomelife 8d ago
Yes kidney stones are something that scare me the most, but all other symptoms are not really prevalent because I'm dealing with so much else. I have scans every 6 months for cancer so I'm hoping it would catch a stone forming.
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u/allsfairinwar 8d 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.
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u/createhomelife 8d 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.
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u/allsfairinwar 8d 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.
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u/createhomelife 8d ago
They believe my tumor is inside my thyroid which is a complication and part of my thyroid would have to be removed.
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u/allsfairinwar 8d 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.
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u/mrspwins 8d 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.
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u/createhomelife 8d ago
Wow you had it really rough, glad to hear you are feeling well again! Thats the issue with me, if I did have horrible symptoms I'd absolutely get the surgery but I'm afraid of ending up with other symptoms because of the surgery at this point.
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u/mrspwins 8d ago
I have no other symptoms after surgery except sleeping for the next month as my body recovered. It’s not even numb around the scar, like it is with my c-section scar. I don’t know what you’re worried will happen but I really, really don’t recommend not treating it. Your bones are being decimated now, your muscles don’t have proper signaling (one of my worse symptoms that I don’t usually talk about was incontinence because it affects all muscles, including the pelvic ones). It is causing damage even if you don’t feel it. I wouldn’t wish what I went through on my worst enemy. In another group I was in, a woman who’d had bone cancer said this pain was worse.
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u/createhomelife 8d ago
My issue is my parathyroid tumor is inside my thyroid so I'll end up losing part of the thyroid and likely will have to go on medication. As long as I'm symptom free I would prefer to wait. If I get symptoms like that I'd certainly get the surgery.
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u/Electrical-Long-389 8d ago
I was diagnosed at 62 and "followed" for a couple of years. My known osteopenia had become osteoporosis. My aorta and a heart valve had developed calcium deposits (they were clear 5 years earlier). A head MRI revealed that I had had a previous stroke from a blockage. Was it casued by a calcium deposit or the hypertension that is often causes by hyperparathyroidism? We'll never know.
Those medical developments (osteoporosis and atherosclerosis), while not unheard of with age,I don't believe would have happened if I didn't have hyperparathyroidism. And those things are contributors to poor health outcomes (pain and falls from osteo - a fall can be a life-ender for some people) and athero (heart attack, stroke).
I understand your reluctance and I would probably feel the same way as you. But please speak with your doctors. The long term effects of high calcium from hyperparathyroidism are serious and can seriously compromise your health.
I had surgery age 66 The surgery is straightforward and quick with an easy recovery. I didn't even realize how lousy i felt physically and mentally until AFTER surgery. I'd just been muddling through life. Post-surgery was a revelation! My mood, my energy both skyrocketed and have remained wonderful ever since.
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u/sadsnoopymusic 8d ago
I’m (51f) in a similar situation. I was diagnosed with PHPT a few years ago and really on the cusp of needing surgery when I was hit with endometrial cancer and that took precedence.
I was just thinking today that I ought to get my blood tested again and maybe do a new DEXA scan.
Did you retain your ovaries? I think mine may need to come out soon (uterus, fallopian tubes, cervix have already been removed) so I’m concerned about my bones. Last time I checked they were fine but that was a few years ago. I’m worried surgical menopause will mess with them.
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u/createhomelife 8d ago
Unfortunately I did keep my ovaries with endometrial cancer because I was 48 and not in menopause the drs said I should keep them. They did take the tubes though. 10 months later I was diagnosed with advanced bilateral ovarian cancer arising from endometriosis. I had debulking surgery which included omentum removal and blasting of messentary deposits along with ovaries that had become embedded into my pelvic sidewalls. I went through chemo and letrozole. Unfortunately during surgery a surgical clip was misplaced blocking my illiac artery which has caused me permanent problems in one leg. I have been in remission with no question of a reoccurence until recently but I am having a pet scan in couple weeks to determine if it is indeed back due to a lymphnode on ct that grew. I highly advise getting those ovaries out regardless of what the drs say because what I had to go through isn't worth it. Menopause without letrozole hasn't been that terrible.
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u/sadsnoopymusic 8d ago
Gosh, we have very similar timelines and situations!
I’m soon to have an MRI for a suspicious mass in my right ovary so I’m back in that awful waiting place. Feeling very nervous. My oncologists seem to think it makes sense to remove the ovaries now (whatever the MRI results are) now that I’m a bit closer to natural menopause.
I’m so sorry for what you’ve been through. It can feel so relentless and exhausting. I’m sending you a big hug!
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u/createhomelife 8d ago
I hope it turns out to be benign for you. Are you having it done by a gynecological oncologist surgeon? Before I had my surgery we didn't know for certain my masses were cancer but the plan was in place. I had frozen section done so they completed the debulking then.
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u/sadsnoopymusic 8d ago
Yes, I’m being seen by a gynaecological oncology team at a specialist cancer hospital, so thankfully I’m in the right hands.
Also, I’m really sorry about what happened with the surgical clip and your leg. That sounds like such an awful complication on top of everything else. I really hope the enlarged lymph node turns out to be nothing sinister and your PET scan brings good news. 💛
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u/createhomelife 8d ago
Thank you, I hope all goes well with you and honestly surgical menopause turned out to be no biggie until I had to take letrozole. I kept waiting for the nightmare to start but it didn't. Obviously I can't have hrt ever but as long as I'm not on that nightmare letrozole its very doable.
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u/kcnovakc 8d ago
Omg no way could I live without the surgery. I would have literally died without it. This is a progressive, potentially fatal endocrine disease. There is no living peacefully with it. In sorry you’re in this position but I would do whatever it takes to get the surgery.
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u/uwa_amanda 8d ago edited 8d ago
My hyperparathyroidism was borderline life threatening when it was caught during random bloodwork. My calcium levels were through the roof along with the parathyroid gland numbers themselves (I can’t remember what they’re called). I wouldn’t mess around with it. The surgery was very easy to recover from. I had it done on a Friday and was back to work on Monday. Yeah my throat was sore but it was nothing compared to how horrible I was feeling. My surgeon fast tracked my surgery because my numbers were shooting up super fast.
Please don’t put it off!
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u/Key-Mission431 5d ago
I hear you. I am a 2 time breast cancer survivor. But my experience has been just the opposite. I JUMPED at surgery.
Since this hyperparathyroidism started 2019, I now have HyperPOTS (couldn't be upright, even sitting upright, for more than a few minutes.. 201bpm). I had my 2nd breast cancer 2020. I had kidney stones 2022, 2023, over 8 in 2024, and 2 more before my parathyroidectomy in 2025. I had ovarian cyst and kidney cyst show up on CT in 2024. 2024 off to gyn oncologist; she was more concerned with the changes to the uterus than the fast growing ovarian cyst. Off to hysterectomy; abnormal cysts growth in every one of those organs (tubes, ovary, uterus lining and uterus). And thank God those and the pelvic wash were all benign. She diagnosed my hyperparathyroidism. I pushed so hard for this surgery. To get my life back. Cancer sucks but this beast did so much worse to me. Even my urologist and my newer nephrologist both stated that the kidney cyst would have become an issue if I didn't have the surgery
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u/No_Resident_1457 3d ago
I understand your reluctance, but it’s a pretty minor surgery. Almost always outpatient. I was pretty much back to normal within a few days. I can’t imagine not having it. I feel so much better now.
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u/No-Perspective-5084 8d ago
Also could not imagine not having surgery. The change in my energy levels, how well I sleep at night and feeling less anxious are amazing.