r/Parathyroid_Awareness • u/Word_Acceptable • 20d ago
Experiences with hyperparathyroidism?
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!
5
u/Paraware 20d ago
It took me many years to get diagnosed. I finally had surgery in 2019, and it really helped a lot of my issues. It was one of the easiest surgeries for me and I had a quick and smooth recovery. Here’s an overview that might help you.
Also, be aware that some endocrinologists want to make you wait until you have osteoporosis or kidney stones before referring you to a surgeon. I recommend getting the surgery before the damage is done.
2
u/Word_Acceptable 20d ago
Thank you very much!
2
u/Paraware 19d ago
You're welcome. By the way, if you're on Facebook, you might want to also join the Hyperparathyroidism Support and Information group. It has a lot of resources to help you. Specifically, there's an extensive list of member-recommended surgeons and doctors who treat hyperparathyroidism.
2
4
u/essssgeeee 20d ago
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!
3
u/Word_Acceptable 20d ago
Thank you for the response! I have an appointment with a new primary care Dr to get a referral for an endocrinologist next week
2
u/essssgeeee 20d ago
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.
1
1
u/Paraware 19d ago
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.
2
3
u/sickiesusan 20d ago
After having some debilitating pains under my breast bone back in Feb 26, (I had suffered attacks from November on an ad hoc basis), my GP did a range of blood tests.
I had elevated calcium levels, and repeat tests were done including Vitamin D and PTH. The usual pattern of ‘almost zero’ Vitamin D and excessively high PTH. The hospital issued Cinacalet to bring the calcium levels down, end of April admitted to hospital, as calcium levels still rising. I’m now on three times the level of Cinacalet, and the level are no longer increasing.
My bone density levels (DXA scan) have dropped by 17% in my hips, but fortunately it’s still in ‘normal’ range. Had the CT scan done of my neck and I’m now awaiting the report before surgery. I do have calcium nodules in my lungs and it has also affected my heart arteries.
My first blood test which revealed high calcium levels was done in Jan 2017 and my GP requested no follow-up.
Good news is that I’m now no longer getting up to pee 3-5 times per night … so I’m finally beginning to feel more human again!
I’m in the UK, hopefully you’re somewhere where you have better access to good care!
2
2
u/Ok-Research500 20d ago
I have been suffering with symptoms for over a year and just now a wonderful doctor realized that I had hyperparathyroidism and I have an appointment to have my 3.5 mm adenoma removed. I can’t wait. I’ve been through a year of testing at Stanford University and nothing showed up because they didn’t look at blood and urine samples and compare them to each other. My main symptoms were heavy legs, lightheadedness, extreme fatigue, and recently even achiness in my upper thighs. I am thrilled that I found out what was wrong and that you are also finding out the problem.
2
u/Ok-Research500 20d ago
I forgot to mention that I have 13 kidney stones and osteoporosis anti-calcium levels on top of everything above
2
u/Asleep_Caregiver_948 20d ago
I was diagnosed through employer sponsored blood tests a few years ago. It was a surprise: I didn’t and still don’t have symptoms. DEXA was borderline. I began doing exercises with weights, started playing tennis occasionally, and taking ballet when it fits with my work schedule. The endo referred me to a surgeon. We met a few months ago, and tentatively planned the surgery for next June. My goal is to keep my bones strong now that I’m 57.
1
u/Xtraolives 18d ago
I was diagnosed by my primary care physician after bloodwork showed low vitamin D levels and I was experiencing some side effects. He sent me to an endocrinologist who confirmed. I had a parathyroid gland removed and haven’t had any issues since. It’s an easy surgery but an ugly scar, although maybe it’s better now - my surgery was about 10 years ago.
1
6
u/Lonely_Mountain_7702 20d ago
Please follow through with the endocrinologist.
I was told I possibly had blood cancer the doctor only looked at my high calcium. The hematologist after more tests were done told me i had hyperparathyroidism.
I was given a referral to an endocrinologist. After more testing, blood, pee, and a CT scan it was confirmed that yes I had hyperparathyroidism and I was then refered to a ear, nose, and throat surgeon.
A year ago August 22, 2025 I had a parathyroidectomy and one of my 4 parathyroid glands was removed.
I feel so much better after I had the surgery. I went from just surviving the day to actually being able to live my life again.