r/Parathyroid_Awareness

Thoughts? I’m pretty nervous.

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. ❤

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?

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.

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!

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

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.

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 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.

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.

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.

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.

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?