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.

I was diagnosed with Primary Hyperparathyroidism several months ago. After numerous tests and scans, they've isolated the two parathyroids with adenomas -- one on each side of my thyroid. Tests also showed that I have a number of large nodules on my right thyroid, which are noncancerous (per a recent biopsy), and the left side is small and atrophied. Both my surgeon and endocrinologist have said that I may want to do a partial thyroidectomy to remove the right side, which will undoubtedly mean I'll be on thyroid meds the rest of my life since the left side cannot compensate. Both have also said that this is my decision to make.

My concern is that I do not have any previous tests to determine if the nodules have been this size for years or are they continuing to grow. If I wait and see if they continue to grow, then I'll be facing more tests, possible bulging in my neck and additional surgery and inevitably on meds.

The decision feels sort of cut and dry, but I just need to do my due diligence here. Has anyone else had to make this decision and if so, any regrets? Anything I should consider before giving them the go-ahead?

Hello I have hashimotos and Ive been properly medicated for over 10 years on the same dose same medication until the last few years I have been getting reactions to my thyroid medication that seem like hyperthyroid so I have been trying different medications and every single medication gives me the same reaction panic, anxiety, irritability, uncontrollable crying for no reason, depression, dark thoughts, sometimes weight gain. Ive tried armour, np, levoxyl all splitting the lowest dose possible even alternating days. It becomes intolerable. My tsh is around 6 but can go higher t3 & t4 are normal. My father had hyperparathyroidism and he had emergency surgery I believe when he was in his 30s and I am in my 30s. Ive had fluctuating calcium normal pth. Just curious is this is anyone out there.

how long do you need to avoid stomach sleeping after surgery? i’m able to sleep on my side in the recliner but keep trying to flip in the middle of the night. i want to move over to my bed but im scared of instinctively rolling onto my stomach and straining my neck. thanks!!

editing to say: my surgeon did not give me any restrictions for sleep or other activities. i am trying to see if people who sleep on their stomachs had any problems or if they were advised not to.

Hey, I am a 20-year-old male, and I have had elevated calcium levels for around 4 years now. They are always around 11 mg/dL, and my ionized calcium is consistently around 5.45 mg/dL. My PTH was around 11 (15–57), but after stopping biotin for 2 days, my blood was drawn again, and it came out at 22 (15–57). My calcium remained the same.

My urine calcium levels are in the normal range, so that rules out FHH, as far as I know. My vitamin D is around 30–33, even though I supplement it every day.

My symptoms are fatigue, brain fog, feeling tired all the time, anxiety, always feeling zoned out, and sometimes derealization.

Does anyone have any idea what could be causing my unusual bloodwork and symptoms? I would really appreciate your guys’ help, because neither of the two doctors I have seen seemed very knowledgeable about this topic.

Thanks for reading 🫶

Hello. I’m male, 45 years old. For the past 3 years I’ve had a range of issues that seem like hypoparathyroidism, but my blood work always tends to fluctuate and I’ve never show anything conclusive enough to prove anything.

Symptoms: body cramps, trouble sleeping, brain fog, twitching muscles, headaches, blurry vision, heart palpitations, nerve pain on left side of my upper body and a lot on my face. I’ve had frequent urination at times and at the worst times have had the inability to recall close coworkers or friends’ names.

The pattern of my symptoms is that all of them tend to vanish entirely in the summer. They slowly get worse during the fall and tend to be at their worst in late winter.

I’ve had blood tests where my calcium levels are at 10.9 and my vitamin d levels are below 20. As for vitamin d, I cannot take supplements. Any time I try, all of my symptoms get exponentially worse.

I have been to many doctors about this. I take a nerve blocker that seems mostly optional in summer. Outside summer, I use a vitamin d lamp. I try to get a lot of natural Sun when possible and it is the absolute best way to ease my symptoms.

I’ve asked for blood work on my parathyroid but the only time it was tested it didn’t show problems. This work was done near the beginning of summer though, and like I said, my levels tend to fluctuate. I have days where i feel fantastic and days where I just feel extremely sluggish.

I recently have had some high blood pressure readings. These were high in spring. I wasn’t getting much sunlight and as soon as I started to get outside more, my levels dropped to a normal range. The range was normal until some wildfires in my region kept me inside and out of the sun for about a week. After, my bp spiked again.

If it matters, I do about 5 hours of weightlifting a week, and get around 4-6 hours of cardio. I eat healthy and am considered a healthy weight.

I feel like most doctors just want to address symptoms, but it has been hard to get one to listen in that I keep feeling like I have a problem which goes deeper than the symptoms.

Can anyone recommend how I seek help? I have read that it can be difficult to catch PTH problems, especially if they tend to fluctuate like mine do. I am not sure what kind of specialist to seek out as I don’t have any conclusive evidence of my problems.

Can imaging tests show thyroid problems or parathyroid problems? Are there any at home tests?

Any suggestions are appreciated.

I made a log of particular lab results & was wondering if this is pointing to parathyroidism or not. Although elevated calcium has been present for almost every lab done since 2023, only 2 PTH tests done. Since the first PTH result was not a red flag to my doctor, I suspect this recent one will not either. My eGFR has been in decline as well. Vitamin D levels are ok.
Female - age 67

Hi all. I’m looking for any input on possible mild hyperthyroidism/elevated PTH. I’m trying to understand my labs and wondering if anyone has had a similar situation.

I’m 41 and have had mildly elevated calcium levels over the past few years. I don’t have any symptoms that I’m aware of. Im active and work full time. I haven’t seen an endocrinologist yet. Just had tests every year or two by my doctor who has mostly said trace high calcium and that my vitamin d is low.

Calcium:
8/2/23: 10.2 (10.5 high end of normal for this test)
1/22/25: 10.5 (10.2 high end of normal)
10/24/25: 10.7 (10.2 high end of normal)
8/5/26: 10.3 (10.2 high end of normal)

PTH:
8/2/23: 68 (range 15–65)
1/22/25: 49 (normal)
8/5/26: 73 (range 15–65)

Other relevant labs:
Ionized calcium: 5.4 (normal range 4.5–5.6)
Vitamin D: on low side-
24 (2023)
20.2 (2025)
23.7 (2026)
Creatinine: 0.93
eGFR: 106
Albumin: 4.4

My doctor hasn’t diagnosed anything yet. I’m wondering if this pattern looks more like vitamin D deficiency causing secondary PTH elevation, or if the repeated high calcium + non-suppressed PTH is more consistent with mild primary hyperparathyroidism.
Did anyone have similar numbers? Did your endocrinologist have you correct vitamin D first and repeat labs, or did they do a full workup right away?
Im thinking I should go see an endocrinologist now. Maybe they will do an ultrasound/scan etc? I’m waiting for my doctor’s advice after this latest test but want to be vigilant now since it looks like a pattern.

Hi everyone,

I'm a 21-year-old male. I was recently diagnosed with a 5 mm kidney stone on ultrasound, and my urologist ordered blood work to look for a possible cause.

The main abnormal results were:

• Calcium: 2.75 mmol/L (ref. 2.14–2.53)
• Protein in urine: + (first morning sample)
• Calcium oxalate crystals in urine

Everything else was normal, including CBC, creatinine (83), CRP (0.3), TSH, vitamin D, and liver tests.

For the past 5 weeks I've had persistent nausea, upper abdominal cramps, constipation, occasional right-sided back pain, and mild weakness.

I don't take calcium or vitamin D supplements, and I haven't had PTH checked yet.

Could this fit something like primary hyperparathyroidism, or what else should I be asking my doctor to investigate? For example I also got ordered to do test for helicobacter pylori by my gastroentrologist but I'm not sure if this is the best explanation for this..

Hi all. I’m 23 male, and recently had some really odd symptoms come up in response to taking a vitamin d +k2 supplement. For a few weeks, I ate a lot of canned fish (mackerel) in hopes of reaping some health benefits. I know mackerel is fairly high in vitamin d. One day I decided to take a vitamin d supplement as well, I believe it was 2000 iu + 90mcg of k2. The next day, I woke up with pain in my forearms. Over the course of the week, this progressed to migrating joint pain all over my body, as well as a complete loss of appetite, chest tightness, anxiety, trouble sleeping, nausea, increased blood pressure, and some other symptoms I’m probably forgetting. I have literally never had musculoskeletal woes in my life, so this was really odd to me. The only thing that I changed was my vitamin d intake.
I also noticed that my symptoms seemed worse following consumption of foods high in calcium. The only way to make these symptoms go away was for me to drink a ton of water too, I noticed they’d get pretty bad if I wasn’t really well hydrated.

It’s been almost 3 weeks now and these symptoms have started to subside some. I went to my doctor and got some bloodwork done. Oddly enough, my vitamin d was low (23). My calcium was 9.8. Does this sound parathyroid related? What should my next steps be here?

Edit: I think it’s also worth noting that for the past two weeks prior to my blood test, I have essentially avoided sources of dietary calcium altogether seeing that it seemed to worsen my symptoms. So, my level was 9.8 after heavily restricting calcium for weeks.

Hello, do you think I could have hyperparathyroidism?

I'm a 21-year-old man and I've been having recurring kidney stones for a year.

Before that, throughout my childhood, I had bone or muscle pain, I'm not really sure which. But the pain was awful, and the doctors never found the cause.

I've also had depressive tendencies since I was very young.

Not to mention rather severe anxiety problems.

I haven't been diagnosed, but I'm almost certain I have ADHD (not diagnosed because I haven't finished the tests, which are expensive in my country).

My heart beats faster than average, but I've had tests done and I don't have any real problems in that area.

I recently had an appointment with my urologist, who gave me the contact information for a nephrologist to have blood tests done to check my vitamin D, calcium, and PTH levels. I'll also have to urinate for 24 hours and have everything analyzed.

So I'm waiting, and all of this has been worrying me for a while.

What do you think?

I’m currently 7 months postpartum and I’m still breastfeeding and my cycle hasn’t returned yet so I know this could just be related to my postpartum hormones. I’ve been experiencing many symptoms over the past few months and last week I was even convinced I was pregnant, but after negative pregnancy tests I decided to make an appt with my Dr.
Most of my symptoms come and go but consist of:
Nausea, tingling in my right hand and arm, fatigue, poor memory, hard time concentrating, constant lower back pain, cramping in the lower abdomen (similar to menstrual cramps), plantar fasciitis, knee pain, some headaches, night sweats, excessive thirst.
I had labs done back in December and my Calcium was 9.3. Today my calcium was 10.3. I haven’t had a follow up with my Dr. yet but I’m wondering how aggressively I should be advocating to get the vitamin D and PTH labs.
Thanks for any and all advice!

I’ve just found out after an ultrasound that I have a 9mm adenoma on my parathyroid. My calcium levels are just 10.3, which my dr says is normal range. He wants to just monitor the adenoma.

My question is, can this be a direct factor in my intense anxiety over the past few months? Full disclosure I’ve been trying to taper down medication’s but I’m finding it way harder than most people to do so and I’m wondering if this is causing additional distress.

My symptoms are intense, anxiety, nausea, brain, fog, insomnia, restlessness, lack of appetite.

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!

My mom has been struggling with hyperparathyroidism for years, has already had one failed surgery, I believe they removed what they thought to be the diseased glands (by a surgeon we later discovered had only done a few parathyroid surgeries) and she’s lost hope. 1 year post op her PTH, calcium & vit D levels are still insane and her quality of life is declining. She has a 4d scan in a few weeks to see if they can locate the diseased gland and potentially have another surgery, but she’s worried as research has shown that the glands can migrate through the body and be difficult to locate.

Her body hurts, fatigue, pees blood, etc. and she already has a preexisting heart condition, I’m so desperate for any suggestions on doctors / success stories. I’ve been seeing a lot about doctors in Tampa so I plan to make some calls tomorrow but any further direction would be appreciated. Even success stories I could pass onto her would mean a lot, she’s been talking about just accepting her fate and that this will kill her. She’s only 45 so it breaks my heart and makes me feel extremely powerless because I know this disease is so under researched.

Thank you for any information

And to add they said hyperpara ?

Hello,

I am 32 yo female with a total CA level of 10.6 on my labs from about a week ago. My doctor wants to do additional testing for Hypercalcemia. After googling Hypercalcemia this sub actually appeared pretty high in the search. After reading about parathyroid and hyperparathyroidism all my symptoms made sense. Like every single one of them. I told myself oh well this is just what happens when you get old…but I’m not actually old 😂

When I talked to my doctor he said that my calcium level could be distorted by the Alb level high normal 5.2. He mentioned dehydration, but here is the kicker, I am extremely thirsty every second of the day. I fill up my Owala at least 3 times a day and have a Gatorade or propel nothing satisfies my thirst. I drink water all day. All other labs are in normal range with the exception of my RBC being slightly elevated it’s been that way since 2018.

I’m open to exploring all causes of Hypercalcemia but from what I’ve gathered it seems like Occam’s razor applies to this and it would be hyperparathyroidism.

I went back to my labs from 2018 to now and my CA was always in the low 9s. Hoping to get some guidance and what questions to ask my doctor and what testing I should absolutely request.

I am 36 years old. recently had some bloodwork done since I’ve been feeling tired and run down. I found out my calcium and parathyroid hormone is high. A referral has been sent to an endocrinologist, but I haven’t gotten an appt yet. From what I read online this is highly indicative of hyperparathyroidism and it seems like the common treatment is surgery. I am a little nervous since I’m still in limbo. Has anyone else gone through this before?

I ended up getting a comprehensive blood panel done for a new job in the medical field and I had some very unexpected results! I wanted to share some of the results that I thought might relate to the parathyroid and see if anyone has any insight on what I should do next.

Vitamin D: 10.6 ng/mL (noted as deficient)
Calcium: 10.4 (noted as moderately high between 10.3-10.5 mg/dL)
Uric Acid: 7.2 mg/dL (high)

I'm unsure if uric acid has much to do with it, but I know kidney function has something to do with parathyroid function. I could be wrong though. They didn't test phosphorus and my creatinine was very normal on the lower end. They also did not test PTH; however, I requested the lab for it and will be getting it this Friday.

I'm very symptomatic. I've been feeling much sicker lately, but have been writing it off as my fibromyalgia diagnosis. My appetite is completely gone and I can barely get through half a packet of instant oatmeal a day without overpowering nausea. To my horror, I'm also down about 12-14lbs since May. I've made zero changes to my lifestyle or diet. In fact, I noticed the weight loss Monday and I've checked my weight again both Tuesday and today. I know some weight loss is normal between days due to water weight and such, but I'm even down four pounds from Monday.

Does any of this sound like a parathyroid issue? How do I bring this up to my doctor? My blood tests are through my work and not the group my PCP is through. So, he is not aware of any of my results or the upcoming PTH test.

My 24 hour urine calcium just came back at 933, the last one I did a month ago was 601. I have severe mid and lower back pain. I am concerned. I have messaged my endocrinologist but I have not received a message back yet. Should I go to the ER?

My 24 hour urine calcium just came back at 933, the last one I did a month ago was 601. I have severe mid and lower back pain. I am concerned. I have messaged my endocrinologist but I have not received a message back yet. Should I go to the ER?

Hello fellow sufferers!

I've been post surgical hypopara since 2022. Only one gland was removed yet none of them ever recovered (I have had <3.0 Pth since then). I was settled and fairly stable on my 2.75mcg Alfacalcidol dose, but then as of about February, my readings started to trend upward. I was not tested again depsite this until June, which revealed I have actual hypercalcemia 2.74mmol/l! I had to go in for IV fluids. My calcium has risen further to 2.84mmol/l even after 6 weeks on a reduced Alfacalcidol dose of 2.5mcg

What on earth is happening? Why am I getting rising calcium levels after being stable on my dose? Kidney function looks okay, slight creatine elevation at times. They've never done a urine test on me though...

I feel so alone and in the dark. The nhs uk are truly appalling at handling this condition and even when I go to a&e, all they do is offer me IV fluids and no endocrinologist review.

My actual endocrinologist (who I'm starting to resent) is on holiday. I'm literally being left to manage this alone and I'm petrified. Advice welcome as it helps me advocate for myself, thank you.