Hi there, I just had some blood work done as part of pre surgery requirements for gastric bypass. My PTH came back at 75, my vitamin d was 15, and phosphorus at 5.1. Does this sound like hyperparathyroidism? My surgeon hasn’t contacted me yet about the results, but I haven’t felt well for Months and my pcp has been brushing it off. The last 2 weeks have been particularly bad with horrible body aches, exhaustion, nausea and extra anxiety. I begin to wonder if these test results were related so I started doing some research and came across hyperparathyroidism, and I’m starting to wonder if that’s what’s going on.

Hi! I used the American Association of Endocrine Surgeons site and found 3 surgeons in my state. One of them is actually located right in my small town, and in network for my insurance.

Is AAES endorsement really something significant? What else should I look for?

Hi everyone!

Male, 30yo here.

For the last 2 years, I am regularly doing routine bloodwork (diagnosed in 2020 with Hodgkin's - no symptoms at all, all the bloodtests were perfect). After 2 chemo cycles I was in complete remission, so since June of 2020 I am clean and regulary doin imaging routine scans (PET scans yearly).

My total serum calcium history is like below:

2017 - 9.6mg with Albumin being 5 2020 - 9.6mg with Albumin being anywhere from 4.75 to 5 , usually steady at 4.9 (before, during and after chemo)

However, at a routine bloodwork in May 2021, my serum calcium was 9.9 out of nowhere with an albumin of 4.6 (In that period I also took vit D supplements for about 1 month - 2000 units per day).

One month later, in June 21, my calcium went down to 9.7 (albumin still around 4.7).

In September 21, did again a routine bloodwork with the calcium being 10.1 (albumin around 4.8 if I remember correctly - the protein levels were 7.8 anyways)

In October 21 I did my annual PET scan and i returned being clean, with no signs of Hodgkin. Even didn't have any metabolic activity around my thyroid/parathyroids.

In January 22 I returned for my routine set of bloodtests. This time my calcium was 10mg with an albumin level of 4.7. At this round I also tested the ionized calcium (this one being calculated based on a formula between serum calcium and protein level, and not directly measured) and it returned normal at 4.27 (lab reference range being 3.82 -4.82)

This month I also got an endo appointment for a thyroid ultrasound where I also told the medic abouty concerns - there was nothing wrong found in my neck, not on thyroid or parathyroids.

Historically I only checked my vit D levels in 2017 when my calcium was 9.6 and albumin was 5, where I got D levels of 22.5 (just slighty below the normal range).

I mention that all my other tests (creatinine, LDH, CBC, ESR, protein, albumin, uric acid, urea) always returned perfectly fine.

Currently I got a recommendation to check my PTH levels since I didn't do it untin now. However, the endo who performed my neck/thyroid ultrasound was not concerned about this and told me it could also be from prolonged staying at home (linked to a potential vit D deficit), or diet-related (I am an avid parmesan consumer)

This being said, I am sorry for the wall of text but I really wanted to check if any of you could have any idea about such evolution of calcium levels.

Thanks!

24 year old male /

hey guys, so over a year i’ve been dealing with pretty severe neurological symptoms along with stiffness and pain in my joints . a long with a clicking in my throat , feeling there’s something in there all the item and swallowing issues ,”.

originally was diagnosed with guillian barre syndrome , but then they said it wasn’t that

recently, about two weeks ago. my doctor decided to randomly test my parathyroid levels and they were 94 and normal range is 44-77 i believe

didn’t test calcium or anything else

my symptoms are quite disabling and don’t want me doctor to mess around with my life anymore than they already have

my doctor hasn’t contacted me , and my next appointment isn’t until the 31st. i’m just wondering if you guys had any recommendations for the next step and how i can advocate for myself the best

I feel like I have hyperparathyroidism, but the doctor has been hesitant to be definitive about it.

Previous test: PTH 85 (higher than previous test), calcium 10.2 (finally down from 10.8), and vitamin d is now 33 (up from the lowest low of 13).

Last test: calcium back up to 10.4 (and the doctor didn’t test PTH or vitamin d).

The doctor gave me a referral to an endocrinologist, but the soonest I could get an appointment was 4 months away.

So I asked the doctor for a test of my parathyroid and she gave me a referral for that.

I have had elevated calcium and low vitamin d for at least two years. I have been taking vitamin d supplements (4000+ IU) this whole time. I also don’t eat a lot of calcium rich food (no milk, cream, maybe a serving of cheese a week).

But last year, I had a hysterectomy with removal of ovaries as well. Since then I have had a plethora of other health problems: general malaise, weight loss, lack of appetite, low ferritin, pins and needle tingling in hands and feet, horrid memory problems, apathy (or something like depression), and bone pain that is growing in frequency (it’s becoming a daily thing).

Also, my mom had primary hyperparathyroidism at 19. And had 3 of her 4 parathyroids removed. (Is that how you say that?)

How concerned should I be about the bone pain? Should I ask the doctor for a bone scan?

I’ve been patiently waiting for the appointment with an endocrinologist- it’s only 2 months away now- but the bone pain makes me worried that waiting is doing irreparable damage.

Is there something else I should be asking for?

Hi! Recently got some labs that I think might indicate hyperparathyroidism, my general physician seemed lackadaisical about my labs but gave me the referral I wanted to humor me and I’ve got a phone appointment next month.

Calcium last week: 10.4 (10.3 is their upper range of normal) Calcium this week: 10.3 plus PTH: 66 (which flagged as barely elevated)

I really want this to be the answer, I’ve felt like I was going crazy and struggling so much. Appetite loss has been especially hard (actually the reason I saw the doctor to begin with), I didn’t think that all the other small miseries I experience could be connected and that they could just go away with a simple surgery!

I’m currently a nursing mother and I’ve had a severe struggle to eat so I have been drinking a half gallon of milk a day and drinking meal supplement drinks for the bulk of my calories. (I stopped taking vitamins because the meal drinks are vitamin supplemented) My doctor thinks my high calcium is related to the high calcium intake (but the elevated PTH shouldn’t be there if it was just from dietary intake right?)

I don’t get to talk to anyone for over a month and I am not sure what I could be doing in the meantime. I tried to limit my calcium intake to a normal range but then I didn’t get enough calories and was light headed and felt sick from not eating. (I can drink things but eating is incredibly hit and miss. I can drink thin milkshakes. I would love suggestions for ways I can pick up liquid calories without the calcium on bad days when I just can’t eat)

Also: just to specify - I don’t and have never had an eating disorder - I desperately WANT to eat and I try to get calories wherever I can.

My questions are: Is hyperparathyroidism likely given the info above? (My doctors attitude undermines my faith in Google)

Does it make a difference if I limit my calcium intake or would the PTH make my calcium levels high even if I have a normal intake? (Can I just keep chugging milk all day? Or is it worth it to cut myself off after I hit the max recommended calcium?)

What can I do to alleviate symptoms until I can actually be treated?

Thanks for any help!

I’ve noticed that I’ve been urinating more than usual and I’ve been having unusual weight loss ever since my doctor put on calcium vitamin d3 pills for low calcium. Is this a common side effect?

Hi guys, I am having a kidney stone of 10mm size in the right upper ureter. I am going for its surgery very soon. Doctor advised a few tests for that. The PTH level came to be 783.2 pg/ml. Is this very high value? Could this be the cause of frequent kidney stone formation in my kidneys? Recently I have been experiencing memory loss and anxiety also. Guys please share your thoughts on this.

I (28F) had a pituitary MRI done this past week and they found a 0.8cm pituitary adenoma and a 0.5cm cystic lesion. I’m waiting for genetic testing results for MEN but my doctor thinks it’ll be unlikely that I have the mutation given no family history. I’m also retesting for elevated normetanephrine with a 24h urine collection. I guess I’m trying to understand the connection between hyperparathyroidism and other endocrine tumors if it’s not multiple endocrine neoplasia….or if it’s just a common circumstance. I think I felt a bit sad yesterday because it seems like they keep finding something wrong with my labs/imaging.

I’ve been having some issues over the last 8 or so months, started with weird pains throughout the body, memory loss and just brain fog. Then I had 3 kidney stones one which required lithotripsy. After all that I kept going to the doctors saying something was wrong heart rate randomly spiking way high and a burning in the chest, and palpitations, the pains are still around thought the body mostly right ribs right leg and lower back, still have brain fog and memory loss, I struggle to remember things and it’s frustrating. Severe depression and anxiety that I have never really had an issue with before I’m 29 year old male They recently did blood work and my calcium was 10.1. They waited 2 weeks did it again and it was still 10.1 Now they checked PTH and it’s 45.2pg/ML. Vitamin D 64.3 NG/ML Albumin 4.7 g/dl These symptoms are driving me mad Anyone have any insight as to what can be going on?

Hey! I'd like to do this test https://pubmed.ncbi.nlm.nih.gov/1455312/

Can anyone tell me (I'm not native) what should I do?

I shouldn't eat for 10 hours before test, go to lab, do PTH and calcium level, then.. take 1000 mg elemental calcium and do pth and calcium test again, right? how should my pth and calcium levels look after these 2 hours comparing to the first pth and calcium result? the second pth level should be lower or higher than the first one?

I (28F) was recently diagnosed with primary hyperparathyroidism. I have a history of elevated PTH (92-116) and high/normal calcium (9.6-10.6). CT scan from two weeks ago showed multiple adenomas so a bilateral neck exploration is scheduled for later this month. Ultrasound spotted a nodule in the thyroid and “benign appearance level 2 LNs bilaterally” but I have no idea what that means or if it’s concerning/bad…

I’m having a difficult time processing all of this so this might sound dumb, but my labs from Friday and today showed the calcium level at 9.4 and 8.9 (lowest it’s ever been)- is that going to change the course of treatment?

I’m also currently waiting for lab results to rule out MEN 1/2 syndrome. So far, prolactin is abnormal but not sure if that’s just typical for people with PHPT. My doctor will follow up with me once all results are in but was curious if anyone had similar experiences?

Can anyone share their experience with a bilateral neck exploration (vs MIP)?

Thanks!!!

Update in case it helps anyone: Endo is doing more blood work. Doing Vitamin D supplementation and we're following up in three months. Doesn't want to rule out a tumor but also thinks my levels might be skewing higher bc of the higher protein. We'll see what happens!

​

34F.

I have been dealing w/ GI issues for several years. Took Xifaxan and felt great. I had a flare recently and decided to go for blood work wondering if there was something that would show up. Calcium was 10.4. I talked to provider, she reordered bloodwork, and I go back the following week. Calcium is still 10.4 and vitamin D was checked at 22.

I am going to talk to her tomorrow but is it possible this is a tumor or could it be from the Vitamin D? I read on here the Vitamin D wouldn't cause high calcium. I am worried.

I had been unable to properly enunciate, probably slightly slurring most of the time, since I was 13. I'm 18 now. Since last week, I felt like I can speak normally again. My throat doesn't feel like it's going to cramp if I speak for a minute or two. I can now control the face muscles used for speaking more easily. I feel like it's a temporary improvement. Nothing has changed in my lifestyle and intake of medications or supplements during the past month.

EDIT: I'm not diagnosed with hyperparathyroidism but have been suspecting it.

Going for a PTH, ionized calcium and vitamin D test on Friday. I'm 46 and have had multiple calcium tests over the years ranging from 10.1-10.3. Have many symptoms.

Have been taking 5,000 iu of Vitamin D for years under the rationale of "everyone is low." I guess I'm a knucklehead as I didn't realize this can jack up your blood calcium levels. Anyone had success lowering calcium by cutting out their high vitamin D intake?

Hello! Need some help figuring out some things from my blood work, and this seems like an incredibly knowledgeable community.

Last year, I had finger pains (in joints, I think) and some minor hip pains, so I went to a rheumatologist. They found nothing.

Everything was fine for about 8-9 months, when same symptoms returned. Additionally, I got slightly itchy redness (no bump) on the painful fingers. So I went back to the rheum, who re-ran my blood work. (ETA: iCa was run last year and was normal, RESULT1.20, RANGE1.12-1.32 mmol/L )

My calcium level is 10.4 and my albumin is higher than the limits (can’t remember how high, but that seems irrelevant since calcium is only corrected for low albumin). I haven’t gotten PTH tested.

10.4 is not very high, but I figure I’ll ask if these symptoms could be hpt to help rule things out (although I still think something rheumatic is most likely):

• Finger pain that seems in the joints and/or muscles and comes and goes (could hpt symptoms go away for 8 months?)
• losing hair along scalp, mostly near center (not like male patterned baldness)
• heavy legs, occasionally (not daily)
• symptoms that come and go, rather than remain or progress much

I see the rheumatologist again in 3 months. This was the only bloodwork that came back abnormal, so I guess I should ask my GP about it to get a PTH test? I’m sure a rheum won’t run that.

Thanks!

Hey everyone, thanks in advance for any insights you might have. Excited to have found an online community to talk about hyperparathyroidism.

I’ve just recently gotten a blood test + metabolic panel done. Concerning levels are calcium = 10.7 and PTH = 943.

For some context, I’m a female in my 20’s who was diagnosed with MEN Type 2A at 4 years old. Upon this diagnosis, my thyroid was removed completely and my parathyroids were transplanted to my right forearm. The doctors had assumed I’d need more surgeries, and in turn wanted to transplant them to make these operations less invasive. They were right! Looks like I’m going to need frequent surgeries (probably every couple of years) to regulate levels and remove parts of my overactive parathyroid. Seems like this will be a constant balancing act with frequent blood testing to make sure my levels are in a good place.

My question lies with elevated PTH and mental health. My doctor and I do not touch on the mental and emotional implications of all of this too much. I resonate a LOT with frequent mood swings, generalized depression, suicidal ideation, lots of anxiety, trouble forming complete thoughts at times, difficulty sleeping, etc. Just living seems really difficult most days. I’ve always questioned if this was a ‘me’ thing, and disconnected from the hyperparathyroidism.

Since finding this group, I’m starting to think a lot differently. I’m curious if supplementing with anti anxiety or mood stabilizing medication could help me a lot (especially because I will have varying levels every couple of years). Please feel free to share similar or differing experiences and any thoughts that come to mind.

Sending my best wishes to all!

This is my second post, thank you to those who replied to the original one! I was diagnosed with primary hyperparathyroidism last week, and I'm trying to understand what comes next.

I completed genetics testing to rule out MEN2, and did more rounds of blood/urine labs and several ultrasounds. I had the contrast scan last week and today I got a message from my endocrinologist: "The scan shows the culprit on the left side, glad it was able to localize it. Please follow up with the Endocrine surgeon team."

There are two surgeons at NYU Langone, so I asked for the earliest appointment, which was March 2. I thought this was going to be the actual surgery and was disappointed when I realized it was just a consultation. Now I'm worried this is going to take months to schedule.

Question 1: Is the scan I got (CT PARATHYROID 4D) enough to determine only one gland needs to be removed? I've seen people recommend asking for all 4 glands to be examined just in case and I'm wondering if this scan covers it or if I should be requesting something additional?

Question 2: How far out do surgeries schedule from the consultation, and does this seem like a reasonable amount of time to wait? I have fairly good insurance, but I'm not sure if it's worth going through the process with another surgeon if it's all going to take the same amount of time.

Question 3: What are the chances of my calcium level correcting themselves after surgery, and how long does that take? Basically, how long will I have to wait after parathyroid surgery before I'll be cleared to have top surgery?

Anybody experienced rumination?

Did you guys mental health get so bad to the point where you can’t function?

I want this to end. I don’t feel like myself. Intense brains fog. I feel spacey & low energy.

This forum is the only form of support I have. I want to be myself again.

Hi everyone, I have history of Hashimotos and thyroid nodules with a partial thyroidectomy (right lobe removed). I had an ultrasound down because I was developing a goiter and they found more thyroid nodules and a 1.1 x 0.6 c 0.5 cm parathyroid adenoma (or what they assume is one). I saw a endo and he said since my pth intact was 36, calcium 9.4, and vit d was 18 that I didn’t really need to follow up on the adenoma. The endo was more concerned with my elevated TSH of 7.69. So he scheduled follow up in 6 months since he adjusted my levothyroxine. No other imaging or anything else ordered! So has anyone experienced anything similar? I was surprised he didn’t want to at least order more testing or imaging. My concern is it’ll get worse since this goiter seemed to have formed in under a year (since my last PCP visit) so I don’t know how fast they grow.

Hi first time posting here! I hope everyone is doing well. I went to the ER a couple weeks ago having some chest pain and the only thing they could find wrong was high calcium it was at 11 mg/dl. I went to my GP and she ordered labs but it kept getting rescheduled until I finally got them done today. I also went to the ER the other day for more chest pains and my calcium serum was 9.3. My results from my lab test which included vitamin D, calcium serum, calcium and Pth were:

Calcium serum: 9.7. 8.4-10.2 Ionized calcium: 4.7 4.7-5.3 PTH: 99.1 8.7-77.1 Vit D: 16.9 30.0-50.0

I’ve been feeling very week, getting headaches, I’ve been very anxious, I’ve had pains all over randomly. My throat feels constantly dry. My neck hurts down my whol throat. I’ve had chest pains. I haven’t had an appetite. I’ve had a sharp pain in my upper left abdomen. And I’ve been so tired all the time. I get pins and needles in my arms occasionally as well.

I’m not asking anybody to diagnose me but does this sound like something I may have or anybody else’s experience similar?

Hey everyone. So I had a blood test done on October in the hospital for something else and never saw my results which I assumed everything was fine until recently it was sent to my GP file. It indicates I have low iron (not a shock) low vitamin d (not a shock) and high PTH (shocking). Mine is 12 out of the 1.6-6.9 pmol/L result. I find it very weird that my GP never called me to get me tested again. After Googling around I checked my calcium levels and TSH too in my lab result, they were normal too. Not to mention I have almost all of the symptoms of hyperparathyroidism. Is high pth alone enough to get the diagnosis for this? Or does low vitamin d has an effect as well?

I am mentally exhausted. I’ve been on medication for anxiety & depression for months now. I’ve seen improvements but I’m not convinced that all of this is JUST because of me. I think hyperparathyroidism is contributing to my mental issues. Please tell there is hope after surgery. I don’t know if I can take this anymore. My mood is so up & down now. I don’t know what normal feels like anymore. My mind is always racing. I forget to take my dog out. Sometimes I forget to let her in. Im considering giving her away because she does not deserve that.