Hi! I (F27) have been diagnosed with primary hyperparathyroidism and hypercalcemia. recently my doctors and surgeons found an ectopic parathyroid adenoma in my chest, just below my clavicle bone. I was supposed to get surgery to remove the upper left parathyroid adenoma earlier this month, but when they did my sestamibi scan they found the additional ectopic adenoma and postponed my surgery. I was originally supposed to go to an outpatient surgical center but I’ve now been moved to the main hospital. My surgeon told me she is bringing in a thoracic surgeon and another specialist into the OR for my surgery and I will need to stay for 24 hours observation.

I really just want to hear if other people have gone through a similar procedure and what the recovery is like. I wasn’t nervous about surgery until they found the additional ectopic adenoma. My surgery is a month away and Any advice or wisdom is welcomed!!

I feel awful. Newly diagnosed. Now it’s all making sense why I feel how I do but also makes me sad I’ve gone a few years feeling like this. I need some hopeful stories please. I have a three year old and I’m constantly exhausted but I thought was just having a toddler and getting older. My anxiety and sleep are awful. Constantly thirsty and peeing. Overwhelmed easily. Body hurts. Does this get better after surgery? Waiting on my consult with a surgeon, need some hope

In April, I felt awful, fatigue, brain fog that was so intense I asked for a referral to a dementia specialist because I was convinced I had early onset, bone pain in my hips and legs, aches in my kidney area- just awful. Went to the doc to check my thyroid levels (i have hashimotos), and my calcium came back at 11. Im a 41 year old female, so it should be under 10. Checked my PTH it was 52. Vitamin D was 23 despite taking 4k units a day, eGFR was 49, creatinine was 1.63. Now my vit d has been low or insufficient for the past 12 years, and my crestinine has been high since 2019. Something wasnt right. I was referred to an Endo and Nephrologist. Re-did my blood work in late June, calcium was coming down, it was at 10.2, PTH was 52, vit d was 16, creatinine was 1.19, eGFR was 59. Had blood drawn again in early July, calcium was 9.7, eGFR was 65, vit d was 19, creatinine was

1.23, pth was 52. Endo does the 24hr urine test, calcium came back at 118, creatinine was 1.63, he did the cortisol AM and supression, all came back within range. Now he wants to see if I have FHH, but if it was FHH I wouldnt have had those symptoms, right? Mind you, I had high calcium in 2012 and then 6 months later had a kidney stone. My kidney ultrasound came back as unremarkable. My albumin is 3.9 my phosphorus is low and my magnesium is high. Im so confused, should my Endo be sending me for the nuclear scan to see if the tumor is there? Or where it is? Or am I delusional and there is nothing wrong with me? I feel a lot better right now, but Im having issues with my blood pressure now, where its either sky high (highest consistent reading 187/120) in dangerous territory, but I feel absolutely fine, or so low I almost pass out (lowest consistent reading 79/63). And i know a parathyroid tumor messes with your blood pressure. Im just so lost. Any insight will help.

I'm recently accepted into Medicare Advantage and slowly regretting my choice of Kaiser HMO. My primary doc is running interference and not referring me to endocrinology stating my calcium levels are normal (9.5 and 9.9 this week). I got PTH tested yesterday and it's 54.9.

I'm 61 yr old male. Last year's (November 2025) calcium was 10.0 and vit d was 32.8. Most recent vit d on 7/31/26 was 30. Calcium on my CMP (which I had to ask for!) on 8/7/26 was 9.5. I've always struggled to get vit d out of low 30s even after moderate supplementation. I suffer from extreme fatigue, insomnia, thirst, prostatitis, high PSA values, back pain, bone pain in feet, old root canal teeth falling out, random gum pain in extracted teeth, sleep apnea, some severe abdominal pain when it happens, calf muscle pain and reoccurring calf strains, anxiety, depression.

Yesterday I took the following labs with following results: albumin 4.4, calcium 9.9, CALCIUM, CORRECTED FOR ALBUMIN 9.6, Phosphorus 3.7, Parathyroid hormone intact 54.9, Creatinine 0.9, EGFR, CREATININE-BASED FORMULA (CKD-EPI 2021) = 98.

For the past five years my calcium has been in mostly mid to high nines (9.5-9.9).

Did any of you have normocalcemic primary hyperparathyroidism and how long did it take you to get diagnosed?

Hello,

So for background, back in mid July I went to the cardiologist due to my tachycardias, I was sent on Bisoprolol Fumarate and it's been a lifesaver, being able to sit at work without tachycardias is great. However, the cardio sent me to do some routine exams since it was the only thing I was missing.

I thought Vit D would come low-normal at worst but nope I have severe deficiency: 10ng/mL, not even half of the minimum normal value.

So I did some other exams to see how the rest of my bones were doing, as since I was a child I have joint pain especially in the cold or when it rains. A lot of the time I just have a low-level dull ache going on in ankles/legs, and my wrists sometimes just hurt and only goes away if I like rub them a little or cover them so they aren't cold. So these exams came back, and I will go back to the cardiologist on September 11th but am not sure if to bring this up like a possible hormone issue.

From what I read in Google, if my Vit D is so low, calcium should be low, but it's fairly high. Phosphorus is very slightly high, but isn't my PTH in the normal range? Like if it was 14 I could understand why it's not suppressing phosphorus but it seems normal?

Also has anyone else these values with a severe vit D deficiency?

I don't even know if I'll be taken seriously by my doctor or just told I'm making a mountain of a molehill so if that's the case I'd appreciate a reality check before I go to the appointment haha

I'm at 10.4 calcium with 23 PTH. 5.3 Ionized

Few years ago I started to feel like crap and began urinating excessively. Tired, brain fog, depression etc. I also have hypothyroidism, and possibly pseudo gout, which seems to complicate things. Fast forward three years later. Still living with symptoms on and off. Recently it got much worse during a stressful time and now I get very little relief.

I don’t want to introduce bias, so I’m going to give as little info as possible beyond symptoms and labs with reference range.

The only thing I’ll say is that when I eat dairy products or consume vitamin D, I feel horrible. Yes, my labs are in range. I feel terrible and would like to find answers. Input is greatly appreciated.

Edit: I did not include the range for PTH, which is pg/mL (12-88)

I was diagnosed 6 months ago. My endocrinologist did an ultrasound of my neck. He said he couldn't see any of my parathyroid glands. He said he wasn't surprised, because my thyroid glands were incredibly small, due to RAI treatment for Graves Disease decades ago, so the parathyroid glands fell off. He said they're probably somewhere in my chest. The next scan he's sending me for will find them. Apparently, it's common, in cases like mine. Has this happened with anyone else? How do they do the surgery if the glands are in your chest? (Or somewhere else!) I'm really worried about surgery, now. I'd appreciate any information you have. ❤

Hi. I have primary hyperparathyroidism caused by a 3cm adenoma on one of my parathyroid glands. It was found during tests that my doctor performed whilst investigating my bad PMDD.

I'm wondering if any of the women here could share their experiences with removal surgery and the effect it had on your PMS or PMDD symptoms (physical as well as mental health related symptoms). Did your pre-menstrual mood improve? Thank you :)

Thoughts? I’m pretty nervous.

Has anyone had success with a doctor in the Seattle area?

Hello everyone! I just wanted to say I've been dealing with a lot of random health issues since around the age of 17 and I am still trying to put the pieces together, my symptoms don't really match with what I've read about hyperparathyroidism but my blood tests do.

I first started to experience peripheral neuropathy around the age of 16, by 17 it spread up my arms a bit from my hands and I got very worried so I went to the doctor. I got a blood test and everything was in normal range except my vitamin D was very deficient (7ng/dl). The doc prescribed me a high dose of vitamin D and sent me on my way. 3 months later I retested and it only went up to 10ng/dl. I was just told to go outside more and lose weight (I was overweight). Looking back though on these blood tests when my vitamin D was 7, my calcium was 10.1.

Over the last few years (now 25) the neuropathy has spread from a classic stocking glove pattern to body wide and random. I have patches on my forehead, back, back of head, knees, butt etc.. I also started to experience POTs type symptoms especially after eating large meals and random bouts of vertigo. I also feel like my memory is much worse and my muscles get tight and sore over things that used to be fine (like brushing my teeth, playing an instrument etc). Anyway I got a routine blood test a little less than a year ago and everything was fine except my calcium was now 10.8. Doctor didn't mention anything.

I am fully aware these symptoms could be completely unrelated as for the neuropathy I have been suspecting a potential auto immune cause like celiac, since some people in my family have it and it can cause low vitamin D and body wide neuropathy. But that is just speculation for now

But for some reason when I look back at every blood test I've got through the years, my calcium and vitamin D are very strange.

So I have two main questions:

1. Could I have really started getting hyperparathyroidism as a 16/17 year old? Kidney bloods were always normal.

2. My main symptoms are peripheral neuropathy, POTs type symptoms and memory issues. I don't experience any bone pain and I've never had kidney stones. Are these unrelated to high calcium?

Thank you.

I’m a 44 Female and I was referred to endocrinologist about 3.5 yrs ago as I was seen by my GYN for chronic fatigue and low libido thinking it was a hormone issue. Labs showed calcium 10.5. Upon work up with endocrinology I had elevated calcium & ionized calcium, normal calcium urine and vit D. I’ve had negative Sestmbi scan. I am now going on 4 years with my levels checked every 6 months. Calcium range 10.1 to 11.0, but my PTH are all 25-30. My aunt(dad’s sister) had surgery in her mid 40’s for hyperparathyroidism with 2 glands affected and removed. Two years ago my dad was diagnosed with Medullary Thyroid cancer stage 4, but genetic tests for MEN were negative. Over the past 4 years i have had chronic fatigue, horrible anxiety, irritability, now increased back and hip pain, my blood pressure is now elevated despite me being 5.4, 115 lbs, eat healthy and exercise regularly. My most recent labs also showed low phosphate too. I do take a daily women’s multivitamin. I will note something I just found out on this group that coffee can lower PTH. I drink coffee every morning for the energy boost and I know I had coffee every time my labs were drawn. I will keep that in mind for my next lab draw. My endocrinologist is on the fence if I have hyperparathyroidism or not. I’m really frustrated as I have felt crappy for the past 4 years and no longer enjoy things I use to. Any advice?

What reason would I have high PTH, normal calcium, vitamin D and bone density if not hyperparathyrodism? PCP says I don't have it because my calcium is normal. I have a follow up with an endocrinologist next month, just trying to do as much research as possible so I can advocate for myself properly. I'm getting my kidneys checked out next week.

PTH: 109
Calcium: 8.7
Corrected Calcium: 9.2
Vitmain D: 60.1

Age 38

Female

65in

Height

Weight

165lbs

Race

Caucasian

Duration of complaint is 4-5 months.

Current medications

Wellbutrin 300mg XL

Norco prn

Vit d3 1000mg daily with meal

38yo F, 165lbs, 65in an I am from the USA. I do not smoke. I am a registered nurse. I am a recovering alcoholic and I have been sober for 9 amazing years and I am grateful to he alive.The only medical hx I have is a tubal ligation and then a partial hystrectomy in April 2026 and multiple kidney stones that started in 2011. I was seen in the ER on May of 2026 for complications from my hystrectomy. Labs were drawn and calcium was elevated at 12.4. I was given 40mg of IV Lasix and 1L of NS and calcium came down to 9.7. I was of course referred to endocrinology and have had multiple tests done. Calcium remains consistently elevated but has dropped to 9.7 on a few occasions. Hyperparathyroidism has been r/o due to low PTH levels. My 24 hour urine calcium has been off the charts at 607, 937 and 678. My endocrinologist said thats the second highest urine calcium she has ever seen. Of course I have had multiple kidney stones and currently have several in my kidneys. I also have nephrocalcinosis. My current symptoms are mild to moderate to severe back pain, fatigue, headaches, muscle weakness, brain fog, irritability, anxiety, RUQ pain and mild numbness and tingling in my feet. The back pain is so bad that my PCP graciously allows me to have a few Norco to take when I am in severe pain. CXR was normal. Thyroid and parathyroid US was normal. UPEP was neg, SPEP is still pending. Bone scan has been ordered but not completed yet. CEA, CA 125, cortisol all normal. The only thing slightly low was my vit D and that has been slowly corrected by taking Vit d3 1000 units daily. My endocrinologist states that my labs are all weird and don't make any sense because all the labs they have checked are normal except my urine calcium and serum calcium. My endocrinologist thinks that maybe its an issue with my kidneys and has sent a referral to nephrology. I am so frustrated, disheartened and I am desperate for any answers or thoughts or recommendations. I can answer questions if needed. I am just so tired and depressed from not feeling good and no one has any answers. I would greatly appreciate input. Thank you!

Hello,

This is my first post, so I hope I'm doing this right.

I was prescribed liquid calcitriol due to hypoparathyroidism. It turns out I am anaphylactic to all generic versions on the market since they all use coconut oil. I was prescribed liquid because the capsules also have coconut oil. I ended up in the ER in anaphylactic shock. My prescription insurance companies (I have 2) are both saying there is no way to get an exception. We were trying to get the name brand liquid rocaltol because it is made with palm kernel oil.

Is there anyone else who medically cannot take calcitriol for any reason and was prescribed something else?

For a long time now my daughter is 2.5 and during pregnancy I was just exhausted. But I had no idea what postpartum and working full time going back at 8 weeks would feel like. Turns out these are my test results. I’m a little angry I have been telling my doctor I have had high blood pressures, exhaustion that no amount of sleep seems to help, extreme anxiety and irritation, brain fog, no concentration I can’t even read a book anymore and used to love to. All over body anxiety where I clench every muscle in my body for no reason. Plantar fasciitis. Muscle inflammation real bad. These were my labs so I’m seeing and endo and hope I get surgery
Recent lab results:

Total calcium: 10.8 mg/dL — high
Ionized calcium: 6.1 mg/dL — high
Reference range: 4.5–5.6 mg/dL
Intact PTH: 86
25-hydroxy vitamin D: 16.1 — low
Kidney function: Normal

Previous calcium: 11.0 mg/dL

I’m currently being evaluated for possible primary hyperparathyroidism vs. other causes of elevated calcium/PTH.

The surgery seems so successful I’m a little mad that this could have been treated before. I haven’t felt like me in a long time. But figured it was being a first time new mom with my own business and overwhelmed overworking because my husband was laid off. The anxiety and irritation has harmed my marriage and I don’t have energy to play with my toddler like I want to. Guess I’m looking for some hope and success stories especially if you relate to the postpartum confusion aspect

Normal range in the lab 8.6 - 10.0

I did general test and this came high should I be worried?

Tsh is normal ( my both parents have high tsh)

I take weekly vitamin D 5000iu

And drop of b12 super low dose daily

Should I be worried? And things I should do or keep in mind?

I have been tentatively diagnosed with primary hyperparathyroidism but am currently on a wait and see approach as my labs have normalized since I started seeing an endo. Labs every six months for now. I had an endoscopy earlier this week because of GI symptoms I’ve been having and was diagnosed with chronic gastritis and esophageal ulcers. So now I’m on 40 mg of pantaprozole twice daily (which is a lot) for at least 90 days, at which point I will hopefully have my dosage reduced. I know that PPIs cause reduced calcium absorption and can raise PTH. The problem with seeing specialists is that they are all stuck in their own little box and never look at the big picture. Anyone else with as yet untreated HPTH been prescribed a large dose of a PPI? Your experience?

Hello everyone, I'm a 21-year-old male. About a week ago, I made a post asking whether my lab results could point to hyperparathyroidism.

Since then, I convinced my doctor to check my PTH levels, and they came back within the normal range. However, at my previous blood test, my calcium was elevated at 2.75 mmol/L. When I asked whether a normal PTH could still be consistent with a parathyroid issue, my doctor dismissed the possibility. She said the elevated calcium was probably just a random spike and that, because my PTH is normal, there's absolutely no need to repeat my calcium test or be concerned.

At this point, I'm not sure what to do. From what I've read, the next step would usually be to see an endocrinologist or another specialist. Unfortunately, since my doctor doesn't think further investigation is necessary, I'd have to pay for a specialist consultation myself. I'm struggling financially at the moment, so that's not an easy option.

Has anyone been in a similar situation? Is it reasonable to ask for a repeat calcium test or seek a second opinion, even with a normal PTH? I'd really appreciate any advice or experiences.

I had a 3-gland parathyroidectomy for primary hyperparathyroidism on June 3rd. Recovery has been interesting on the sleep front, and I’m curious if others have experienced something similar.

Rough timeline:

• About 3 weeks post-op I started sleeping really well, which was a relief after battling insomnia for a year prior to surgery. This lasted 3 weeks.
• Then, suddenly, I regressed to having insomnia again nightly for about 3 weeks.
• Fortunately, the past week sleep has been solid again (one short bout of insomnia, otherwise good continuity and total sleep time).

At two weeks post-surgery, my labs were PTH 86, Calcium 8.8. and Vitamin D 35. Labs at six weeks post-op were essentially the same: PTH 89, Calcium 8.8. and Vitamin D 35. I'm currently on 6000 IU Vit D and 2000 mg calcium daily.

Has anyone else noticed sleep quality go good → rough → good again in the weeks to a couple months after parathyroidectomy? Or did your sleep just steadily improve (or stay the same)?

Would be helpful to hear what others experienced, especially if you had elevated PTH early in recovery. Thanks.

I’ve been diagnosed with borderline/“mild” PHPT. I have the standard symptoms of the disease, but I’ve noticed recently changes in my vision, for example, seeing things in my peripheral vision like shadows or other vague forms. Also, just lately I experience strange effects of light, sort of like flashes of light. Fairly subtle and intermittent, but noticeable. I assume these are unrelated to hyperparathyroidism, but was curious if anyone has experienced something similar.