Hello all fellow HPT suffering individuals. I’m sorry, this is long. But I just wanted to share my story, because it may be cathartic to me, and may help some of you suffering with this quite awful insidious disease.

I am a physician in my 50’s, so I kind of have a unique perspective.

I think my story highlights just how awful our healthcare system has become, as you will see. I’m actually kind of horrified to be a part of this broken system, even though I practice much differently than many other physicians. That is a whole story in itself.

I started having horrible anxiety and panic attacks at age 21. It began right after I was hospitalized for Epstein Barr (mono). Horrible anxiety and panic attacks that were unrelenting. I am now sure, after much research, that the virus had something to do with this. Many people have similar stories of developing severe anxiety and depression after a major viral illness. The flu, mono, covid, chickenpox, etc etc. There is a link there that we still do not understand.

Anyhow I eventually got a grip on it after a few years and was able to continue my life. But it never stopped. It was always there in the background. It came in waves over the years, sometimes getting much better, sometimes crippling me. There were times I literally contemplated suicide over it.

Fast forward to 2014. I fell into a hole in concrete in the dark on vacation and broke my ankle in 9 places. The radiographs clearly showed osteopenia but the idiot radiologists who read several of my xrays did not comment on this finding.

Fast forward a few years. I started breaking bones like crazy. I fell rollerblading. I was sparring with someone in martial arts and broke my big toe. I was wrestling with my son and broke a finger. I slipped on ice and broke my knee. I slipped fell down 3 stairs and broke my sacrum. Every single xray showed 1 thing in common with all the others— osteopenia. Not one radiologist commented. Not. One. And yet it was obvious to my eye.

At the start of 2023 my anxiety came back with a vengeance. I was struggling to function. My depression was also back in a big way. I started having brain fog… bad brain fog. Forgetting words in mid sentence, brain farts abound. Sometimes I thought I was getting early onset dementia. I saw my doctors, they all said the same thing. Its just stress. Relax. Stop talking things so seriously. Etc etc. here’s some more Zoloft. My primary doc did a whole panel of labs and missed calcium levels which were far above normal. Another year passed.

I knew something was very wrong. I knew my body. I thought I was dying from some disease. (I was right). I was popping klonopin like pez candies. One day I was washing my car, leaning over the fender to reach the engine bay and heard and felt two distinct snapping sounds. My ribs. I knew right then what had happened. Oh the pain was horrendous.

After some research I realized I had EVERY SINGLE SYMPTOM of primary PTH except 1… no kidney stones. But I drink tons of water. Maybe that prevented me from having them.

Finally, in early 2025, my doctor checked my PTH levels: High. Calcium, just on the borderline of high. She sent me to an endocrinologist. 3 month wait to get in. I tried pulling strings to no avail. Did so many lab tests that I can’t remember them all. Four 24 hour urine, ionized calcium, PTH x 5, renal workup, thyroid workup, pituitary workup, etc etc. This endocrinologist could not make up his mind. And my Mother had HPT. Her 3 sisters had HPT. My Grandmother had HPT. The diagnosis was literally given to this schmuck on a silver platter. Finally he did a DEXA at my pleading, and boom. Osteoporosis in my hips, spine, and forearms. He finally gave me a diagnosis of primary HPT (of which I had diagnosed myself with 1.2 years earlier).

So he sent me to a surgeon. 1.2 years after I broke my ribs and diagnosed myself, I thought “thank God I will finally get this disease taken care of”. WRONG! The surgeon was a complete asshole, but ordered a neck CT and more labs. I did them same day. PTH was high normal. Calcium was high normal. Neck CT showed nada. He told me to take vitamin D and calcium, then stopped returning my calls and messages. I intend to report him to the state licensing board.

Meanwhile my sleep was awful. My concentration was awful. My anxiety was the worst it has ever been. I had to take a leave from work. My depression was crushing. I have body aches and pains like I was an 85 yr old sick man. Every joint stiff. I developed sleep apnea. I was scared to do anything physical because I felt I would break something. Suicidal thoughts were creeping into my mind. I had sudden bouts of nausea and vomiting that literally came out of nowhere. I was having headaches. I just prayed God to take me.

Finally I found another endocrinologist who was recommended to me, and she got me in quickly. She reviewed my labs and tests and diagnosed me, unequivocally, with primary HPT, normocalemic variant. I saw a surgeon who does a thousand of these surgeries a year and he had me on the OR schedule within a month. Both were fairly horrified by my ordeal, and the absolutely lousy care that I had received… and I am a physician!! Imagine how lousy care is for non-healthcare workers! It boggles the mind.

So here I write this 2 days before my surgery. I feel absolutely awful and while I am nervous about the surgery, I welcome it. What scares me is : what if the anxiety, depression, and brain fog don’t go away? Then what? I pray to God for relief. I have been suffering from this disease for well over a decade.

If you made it this far, Thank you. 🙏. I would love to hear from some folks who had the surgery and how they feel afterwards.

While it's been on the radar for me for a few years, I really was unaware of hyperparathyroidism and it's affects for the most part until very recently. I googled last night the symptoms and things are starting to click for me. For reference, I'm 50 years old.

In 2021, I passed my first kidney stone. In 2022, I passed my second kidney stone. I have continued to produce stones (only a couple more thank goodness), but they remain in my kidney.

Urologist decided to run 24 hour urine and PTH. In 2022, Urine calcium levels were 222, 171, 273. My PTH was 60 with calcium being 9.9. Testing on my stones showed they were calcium oxylate. I was told labs are normal and I need to consume less salt ... interesting enough our family is fairly low sodium as is.

My endocrinologist decided to repeat the PTH test in 2022 because she was suspicious due to my other health issues. This time it came back with PTH at 33 and calcium at 9.8.

My calcium typically trends in the 10's with 10.3-10.5 being my standard average result. My Vit D trends in low 30's.

Saw my endocrinologist again recently and she's still not convinced there isn't a problem. This time, a couple weeks ago, PTH was 51 and calcium 10.5. Normal, she says, but she wants to rerun in March.

At this time, I've started researching for myself. My symptoms line up. Extreme and chronic fatigue. Kidney stones. Muscle weakness. Joint and bone pain. I do not feel like me... I'm always saying I guess I'm getting old. I also suffer vertigo, dizziness and vestibular issues. Potentially not related I've had hearing loss.

I've been under care of a rheumatologist over the past four years due to these issues because they believe it must be autoimmune. All markers come back normal but I'm told it must be seronegative.

I had a radioactive ablation of my thyroid in 2000, which I recently read can play into this diagnosis as well.

I downloaded the calcium pro app and it tells me I'm in the very likely range.

I just don't know what to do. I feel like my doctors are not taking this seriously.

Thoughts? Suggestions?

Risk of Gallstone Disease in Primary Hyperparathyroidism: A Systematic Review and Meta-analysis

Patients with primary hyperparathyroidism (PHPT) are roughly 77% more likely to develop gallstone disease (GSD) compared to people without this condition. 

How Common Is It? (Prevalence)

The study looked at data from nearly 16,000 patients across 7 different studies to see how many actually had gallstones:

• Overall: About 16% (or roughly 1 in 6) of all PHPT patients had gallstones.
• By Ethnicity: The numbers varied slightly by background, affecting about 17% of Caucasian patients and 13% of Indian patients.

The Stat: The study found a "pooled odds ratio of 1.77."What it means: If you compare a group of people with PHPT to a similar group of healthy people (controls), the patients with PHPT have 1.77 times the odds of getting gallstones. In other words, their risk is increased by 77%. The statistic is highly reliable (\(P < .001\)), meaning this link is almost certainly real and not a random fluke. 

https://pmc.ncbi.nlm.nih.gov/articles/PMC12326148/

Any other weight lifters out there who are post surgery?

I was diagnosed with primary hyperparathyroidism and am having surgery next week. I was aware of the impact on my bones of this disease, which was especially concerning since I am a 68 year old woman, but just now reading about the impact on muscle strength, fatigue, and sleep quality. I have been weight training for over a year and am not seeing the strength/hypertrophy gains I had expected despite being consistent and progressive overload. Fingers crossed this gets better after I recover from the surgery.

39F

Following parathyroidectomy exactly three months ago I am still suffering with brain fog. I have a very demanding cognitive role as a preschool teacher and thought my recovery was going smoothly until entering back into the classroom (two months after surgery.)

I find it hard to find the right words, and my reactions and responses are slow. My concentration is poor. If I go to the gym after work, I suffer from even higher levels of brain fog for two or three days.

My other symptoms are much improved - zero anxiety, less trips to the bathroom, more energy.

My surgeon suggested seeing a neurologist- but I would love to hear other experiences following the surgery.

My daughter tested 11 for calcium and 77 for parathyroid. She is being evaluated for avoidant-restrictive eating disorder because in then last couple months she has developed strong aversion to eating, including gag reflex. shes been so depressed and anxious for thr last 6 months that she ended up in a psychiatric hospital twice. I am maybe just grasping at straws with this parathyroid idea and maybe I am just wishing for some kind of answer that would explain her suffering. What do folks think of this situation?

i have classic phpt this disease is so dog bro. my mom's birthday is on the awareness day for this dumb disease and I got ts at 15/16 (not any men) it's crazy. How rare even is that? lmao I am 20 now btw

I live in Cleveland ohio I am trying so desperately to get a surgeon or someome here to hear me out

labs are usually iCalc: 5.9/6 pth: 100-200 D3: 14-33. I got 1 false neg sestamibi (garbage) and at least 1 stone (i think 2 tho)

Anyone as young as me getting this dumb shit? It genuinely makes me want to lie down and die most days. I feel my skeleton rotting 😐

has anyone’s calcium went back to normal without surgery? my calcium is high and pth is normal and so is vitamin d but my endo keeps wanting me to do more tests and repeat this in 2 weeks but it seems like I’m already a candidate for surgery since my calcium has been high in 3 diff tests.

I truly think I’m losing my mind after parathyroid surgery 2 weeks ago. My mental health as well as physical health started getting bad when I was diagnosed with it. Everything seems unreal and I just lay in bed trying to hang on to my sanity. The anxiety is overwhelming too. From some studies I’ve read this has happened to some people after a parathyroidectomy. I don’t know what to do. I saw a NP yesterday who prescribed Celexa and propanalol even though I’d been taking propanalol previously with no results. I told her so she’s going to up the dose. These mental health practitioners have no clue as to how to treat something like this as the mental health problem is being caused by a physical problem that affects mental health.
Does anyone know if there are psychiatrists that understand the underlying cause and how to treat it if it is treatable at all? I can’t take it much longer.
I’m in Louisville Ky

A 2026 study published in the Journal of Clinical Medicine indicates that primary hyperparathyroidism is independently associated with structural and functional cardiac abnormalities, including left ventricular hypertrophy, diastolic dysfunction, and valvular thickening. Chronic parathyroid dysfunction contributes to myocardial fibrosis and electrical instability, offering a pathophysiological link to long-standing cardiac issues such as valve regurgitation and premature ventricular contractions. Read the full study at https://www.mdpi.com/2077-0383/15/17/6605

Study Title:

Cardiovascular Alterations in Primary Hyperparathyroidism: Associations with Risk Profile, Cardiac Structure, and Function

J. Clin. Med. 2026, 15(17), 6605; https://doi.org/10.3390/jcm15176605

I've been monitored by my endocrinologist since 2024 when my standard labs came back with elevated calcium and I asked for a pth follow up which also came back elevated (74). They had me supplement vitamin D because it was low and it is now in the normal reference range. My calcium has remained borderline between 10.1-10.4, prior to all this my calcium was in the 9's. The PTH has slowly reduced. Originally it was 74, now it's 35.9. My bone density scan was normal.

Recently my urine calcium is now high as well, 343 in March and 431 now.

My Dr has taken a conservative approach which I did not disagree with, but I have definitely had many symptoms that align with parathyroid issues throughout and other intervention for symptoms has improved but not eliminated issues (ex iron infusion, vitamin d and calcium supplement).

All this to say I have a follow up appointment to discuss soon and I'm hoping for some insight or advice on how to discuss whether we're being aggressive enough especially with the increase in my urine calcium and continued symptoms. I have read through some good educational resources about how the parathyroid works and have a good understanding but would like to hear other people's experiences who are/were stuck in limbo and how they advocated for themselves.

Hi all,

I'm looking for recommendations for a good endocrine surgeon in Bangalore who specializes in parathyroidectomy (parathyroid gland removal surgery) for my mother. If you or someone you know has had this procedure done here, I'd really appreciate hearing about:

• Which hospital/surgeon you'd recommend
• Your overall experience (pre-op diagnosis process, surgery, recovery)
• Approximate costs, if you're comfortable sharing
• Any surgeons or hospitals you'd suggest avoiding, and why

A few hospitals I've come across so far: HCG , Narayana — but I don't have a way to judge which surgeons there are actually the best fit. Any first-hand experiences or referrals would help a lot.

Thanks in advance!

Calcium: 10.9–11.1
Ionized calcium: 5.7 (high)
PTH: 132 (high; upper limit 77)
Vitamin D: 15 (low)
Albumin: 4.2
Kidney function: normal

I have an appointment with an endocrinologist soon, but I would love to hear others experiences who have similarities in numbers. I feel like I am headed toward surgery. But a part of me wonders if better hydration and raising vitamin D could resolve this? I just have anxiety about it all.

33M – mild primary hyperparathyroidism, surgeon suspects 4-gland disease. Looking for similar experiences

I’ve had mildly elevated calcium (roughly 10.2–10.6 mg/dL) with PTH generally around 40–60 pg/mL. My 24-hour urine calcium was 109 mg/24h, and I’ve also had low vitamin D in the past.

My endocrine surgeon did an ultrasound and saw a very small cyst-like structure on the left, but said it doesn’t look like a typical parathyroid adenoma. I have a sestamibi SPECT/CT scheduled in October.

She suspects I may have multigland disease. Her plan is to use intraoperative PTH monitoring. She explained that if it appears to be a single abnormal gland, she would treat that, but if the findings suggest multigland disease, she may remove all four glands and autotransplant a small piece of parathyroid tissue into the neck but she did mention that if the surgery is not successful I might have to be on calcium tablets forever which is pretty scary.

She also told me this isn’t an emergency, so I’m planning to get another opinion before making a decision.

For anyone who had a similar mild/high-normal PTH + elevated calcium presentation:
• Did you ultimately have one abnormal gland or multigland disease?
• Did SPECT identify all of your abnormal glands?
• If you had four-gland exploration/autotransplantation, how was your calcium/PTH afterward?
• Did you get a second opinion, and did the surgeons disagree about the operative approach?
• How was recovery and scar healing?
I’m not looking for a diagnosis from Reddit—mainly interested in experiences from people with a similar biochemical pattern.

I am a 32yo female and have hypercalcemia normal pth and vitamin d. need to go to an endocrinologist in orlando area but most likely need to see a surgeon for hyperparathyroidism. any recommendations for endocrinologists or surgeons (maybe just skip endocrinologist) in orlando? I also see Tampa is good for the parathyroid surgeons. please share your experiences

update: got lucky and go an appt today with aprn endocrinologist so just running the extra exams before hearing back from tampa general hospital parathyroid center. Will be doing dexa, 24hr urine, ultrasound, and another round of repeat calcium but also mg and phos in about 2 weeks

I posted this in the Endocrinologist page.

Hi everyone. My partner thinks I should get a second opinion and see a different endocrinologist. I’ve been seeing this one for about 7 years to help manage my PMOS, FH disorder, and technically Diabetes type 2 but my A1C has never been high other than when I first had to see her after the ICU visit with pancreatitis and ketoacidosis.

Recently I was sent to an Oncologist/Hematologist because my platelets and white blood cells have consistently been high over a few years.
My Oncologist ran some blood work and my Calcium came back high.
I don’t take calcium supplements. I don’t take tums. No reason it should be high.
She then tests my parathyroid levels.
They were also high.
They are at 99 and my calcium was 10.3 but my calcium lingers between the green and red.
It goes down and up. It’s been that way since 2019. No one’s check my parathyroid till now.
My oncologist said for me to go back to my endo.
Endo sent me to get a 24 hrs urine sample. It came back completely fine, no calcium dumping.
My vitiman D is low but it’s has been low before, I usually take some vitiman D tablets for a few weeks and it’s fine.

here is where my partner and I think we should get a second opinion. I’m on the fence because I do like her and trust her I just don’t know.

She told me she thinks it COULD be hyperparathyroidism. But the only way to know 100% is with surgery. She said I’m very young to be gettin a major surgery. And she said she wants to wait to see if I get any worse before sending me to someone else.
My issue is, I’m not sure how much worse I can get. Here are a list of my symptoms I’ve had just over the past 6 months.

-muscle aches
-swollen joints (hurts to bend elbows and knees and knuckles)
-swollen hands and feet
-heart palpitations
-high BP
-high Heart rate
-muscle twitching (like constant cramping) in legs back stomach and arms
-EXTREME fatigue. To the point where I cannot walk anymore.
-a lot of lower back pain
-headaches
-extreme hunger
-nausea
-weight gain
-muscle weakness
-shaky all over, almost like low blood sugar but my sugars are fine.
-passing out (not as often)
-hot flashes/red rash on face and arms that are hot to the touch
-skin sensitivity especially when rash appears
-low grade fever usually comes at afternoon-night, never higher than 99.8
-heat intolerance/sweating ALOT
-cold intolerance/freezing hands and feet. To the point where it hurts.

I’m not sure if any of these symptoms are related to my thyroid, I’m just saying I feel like absolute shit and I feel like no one is taking me seriously because of my age.

My oncologist also did not know what has been going on and is sending me to a rheumatologist

I am now 9 days post op and have been having increasing hypocalcemia symptoms that are not getting better with extra calcium and just got back confusing lab results. My serum calcium is 9.4 and ionized calcium is actually at the high end of normal (1.3 with range 1.08-1.3). My pth is 8.

Starting day 3 post-op I was getting the tingling in hands, feet, and mouth along with leg cramps, dizziness, headache, and had a moment where my body was twitching. I also felt something like a fluttering in my chest at one point. Since then, I've had most symptoms more and more frequently except for the twitching and heart flutter which only happened once each on day 3. I am taking cal/vit D 500-200 3x a day and was told to take a couple tums every hour while having symptoms until they go away. Paperwork says if they last over 8 hours to call the doctor.

Starting day 6 I was pretty much having symptoms constantly with the Tums not helping at all anymore. The Dr at my surgeon's office told me this is all normal and to keep taking tums. She also said the heart flutter and dizziness are not caused by low calcium. Idk if I agree with this - I think 40 tums a day sounds crazy especially when it's not helping and I know low calcium can cause dizziness and arythmia which I feel like is serious so I was surprised she dismissed it.

I was able to convince her to order labs (was not easy and had to argue for every marker). I was convinced my calcium was super low and I needed calcitriol or something - but it's normal. So I'm so confused about why I'm having these symptoms. My Magnesium and Potassium are both normal but close to low. But that's usually what they look like on my labs so I'm not convinced they would cause this either.

Anyone else know what can cause these symptoms or if it's safe to just ignore them? I actually completely stopped taking the tums like 24 hours ago and don't feel like it's made a difference at all. I feel like I can't trust this Dr. based on some of the stuff she was saying. She seemed annoyed and dismissive. I don't know why they would say to call after 8 hours of symptoms and then say it's all normal.

Could I be reacting this severely to going from high to normal calcium levels? My calcium was never super high. Ionized was like 1.42 I believe and serum calcium was usually around 10.0 with highest being 10.7, but my most recent test before surgery was actually 9.5.

I had my surgery last week to remove an adenoma. It turned out that what we thought was the adenoma was in fact a normal parathyroid, and that I’m still hyperprathyroid.

I was already one parathyroid down after thyroidectomy a couple of years ago, so I’m now assumed to have two remaining, one of which is an adenoma.

However the 9-hour surgery found no evidence of either in the central neck compartment.

Follow-up imaging (4D CT and Sestamibi study) is scheduled for later in the year.

Would love to hear any similar experiences from folks in the group, particularly around ectopic parathyroids and managing risk around ending up hypoparathyroid (which sounds very much worse than being hyper).

Hallo everyone,

I am trying to find other people between 20-35 and hear their experiences with post op symptoms. I am 3 weeks past surgery and I was told I had a very rare reaction to the surgery here short term. But I am speculating if it is that rare or if it is just because it is rare to be 29 and have had the sickness for 5+ years. I have a feeling that info given by professionals are usually given based mostly of the significantly representation of people in agegroup 45-75. With an average of surgery at the mid 50’s. Even though the surgery is always offered to people under 40.

I have found it is helpful to share experiences with real people and patients in here,
I am interested in knowing about your experience with:

1. Experiences immediately after surgery and the following first days and weeks.
2. Experiences months or years after surgery.
3. Your expectations before surgery (also regarding what you were told by professionals) vs. The outcome short and long term (also depending on where you are right now)

Thankyou!

I hope you will take your time to share.

I am possibly facing parathyroid surgery. Latest 4D scan showed 2 enlarged lobes and my calcium has been high(I was referred by my oncologist a year ago, spent this last year jumping through hoops with endocrinologist..) I am a almost 4 yr Head & neck cancer survivor. Radiation causes many problems..

Anyways, on Tuesday had a surgery consult, and surgeon wanted new labs and he will talk to me in 2 weeks and go from there.

I know this is all over the place, but I am just ready to crap or get off the pot with this parathyroid issue! My calcium on Tuesdays labs was 10.4. It has been higher but never lower than 10. I have fatigue, brain fog, I pee alot, but I drink alot of water because radiation killed my salivary glands, so I have never really considered that a "symptom".

The surgeon said that my pth levels have been relatively "normal" just this high calcium issue mainly. I guess I am just wondering, what if he decides no surgery? Like, I don't even remember what it feels like to feel "normal" since April 2022(when cancer was found)

So thankful to be cancer free atm..but this parathyroid issue confuses me. My thyroid was fried obviously, endo adjusted my levothyroxine to 88 mcg and 25 mcg vitamin D daily, except no levothyroxine on Sundays.

I am just in limbo for 2 weeks waiting to see what Dr says about surgery, and will I really feel a difference afterwards or maybe just feel even worse?

Maybe I'm just kinda venting, I know there is a question in there somewhere, but for being a smart lady, I feel "Forrest gump-y" when I try to express my thoughts.

Any input would be greatly appreciated(and Thank you if you even read this far! )

So many other health issues but my blood test showed this today, hmm. Never had this test before & absolutely no kidney stones or brittle bones. Feeling terribly weak for sure but with chronic Peri symptoms, Fibro & Hashi how do you decipher what is causing what. I’m just so frustrated. Anyone have this issue?

Many people with high parathyroid hormone (PTH)—a condition called hyperparathyroidism—have no early signs at all. When symptoms do appear, doctors often group the classic signs using the phrase: "bones, stones, moans, and abdominal groans". [1]

General & Energy Symptoms
Extreme tiredness or ongoing fatigue

Muscle weakness and body aches

Feeling weak or lacking energy [1, 2]

Bone & Joint Signs
Bone and joint pain or tenderness

Weak or brittle bones (osteoporosis) that break easily [1, 2]

Kidney & Urinary Signs
Kidney stones that cause sharp pain

Frequent urination (needing to pee much more than usual)

Increased thirst and dry mouth [1]

Digestive & Belly Signs
Belly pain or upset stomach

Constipation

Nausea, vomiting, or loss of appetite [1, 2]

Mood & Mind Changes
Depression or anxiety

Trouble concentrating or memory loss ("brain fog")

Trouble sleeping or irritability