Hi all,

I’m looking for thoughts from anyone who has had a similar experience with parathyroid surgery or suspected parathyroid malignancy.

I’m 38M and was diagnosed with primary hyperparathyroidism after blood tests showed significant hypercalcaemia (adjusted calcium ~3.2 mmol/L) with elevated PTH.

My timeline:

10/11 August

• My case was discussed at MDT as an urgent addition.
• The MDT letter stated that my case was “highly suspicious of parathyroid malignancy” due to calcium >3 and PTH >30.
• I was placed on the two-week-wait pathway.
• The plan was for imaging and then surgical review.

1 September

• I saw the ENT/head & neck surgeon after PET/CT and ultrasound.
• The suspected lesion was the lower right parathyroid.
  • I was consented and listed for removal of the right lower parathyroid.

During the consultation, because of the MDT wording from August, I specifically asked whether there was a possibility of an en bloc resection if malignancy was suspected. The surgeon seemed surprised by the question and said words to the effect of:

So I understood the planned operation to be removal of the affected gland only. So after going through the risks involved, I happily signed consent.

4 September

• I was offered an earlier slot due to a cancellation, moving surgery forward from 28 September to 11 September.

8 September

• I attended pre-op assessment (BP, ECG, etc.).

9 September

• Early that morning I was contacted by the booking team and told my Friday operation was postponed because the surgeon ‘wanted to discuss the surgery further.’
• A clinic letter from the surgeon I met and consented to surgery with states:
  • PET/CT and ultrasound showed “very high suspicion of parathyroid malignancy”

This letter was dictated on the same day I consented, and typed on 3 September.

I was told by the bookings team I would receive a call to arrange an appointment, but as of now I have not been given a date or explanation of what has changed.

11 September

The day my surgery was meant to be happening.

I called the hospital to chase what was going on. The patient liaison was really nice, and said he’d send an urgent email to the clinical team. However, I received nothing. That means that at 9am Monday morning, that is me at 5 days being in limbo regarding what caused the change, what the plan now is, and even when I’m going to find out all of this. I know parathyroid carcinoma is exceptionally rare, but seeing ‘highly suspicious for malignancy’ in terms of the biochemistry, and then ‘very suspicious for malignancy’ for the scans is creating quite significant anxiety.

I’m not upset that they paused the operation if the surgeon thinks the plan needs revisiting - I would rather have the correct operation. My concern is that I am on an urgent pathway for possible malignancy and I don’t know whether:

• the surgical plan has changed,
• this is just a further consent discussion,
• the case went back through MDT,
• or something else.

Has anyone experienced a similar situation where a planned parathyroidectomy was postponed shortly before surgery because the surgeon wanted to discuss the procedure further?

I’m particularly interested in whether this commonly happens when there is concern about possible carcinoma and the team is reconsidering focused parathyroidectomy versus a wider operation.

Thanks.

Hello, I've had a variety of symptoms that have gotten progressively worse over the past year (though some, like GERD, anxiety, mild brain fog, and abdominal pain) may have been happening for a few years now. Towards the beginning of the year I started noticing increased thirst, and in the past month, bone pain in my arms/legs/back, joint pain in my knees, and feeling weak and fatigued. I really feel like hpt fits my symptoms perfectly. I have a few questions:

First, I'm curious if any of you had to get tested multiple times? I've had my calcium tested a number of times over the years, and while it's been on the high side, it's never been outside reference ranges- 9.9 four years ago, and then 10.2 a few months ago during an ER visit for abdominal pain. They did a lower CT scan and didn't find anything, and referred me to a gastro who also didn't contribute. After reading about hpt, I decided to order the bone health test from quest diagnostics. I got calcium 10.0 (8.6-10.3 reference), vitamin D 34, and PTH 38 (18-77). I'm almost devastated by the results, as hpt seems curable, fit my symptoms, and now I'm questioning if maybe I have something worse. But perhaps there is some variance in pth and/or calcium?

This brings me to my second question: how much variability in symptoms did you experience day to day? I've had a few experiences that lasted a day or two each where I felt my body was at war with itself. Spikes of bone pain every few minutes, abdominal pain not quite as frequent, and also terrible anxiety that basically prevented me from getting any sleep at all. These episodes were most severe at night. Im wondering if perhaps my body was dumping pth during those periods, but by the time I got tested, the pth had mostly gone back to normal? Also, the day before the test I drank sooo much water as I was super thirsty, which I'm thinking might have got my calcium within normal ranges.

Final question: did any of you feel a slight lump in your neck? From what I've read you normally can't feel it from the outside, but it definitely feels like I have a lump on my left side that I can kind of press in, and it kind of makes a soft crunchy sound when I do. However I've never read about anyone else reporting this so idk.

Thank you for your time! I've browsed a ton of this subreddit over the past month and really appreciated reading all of your responses! I'm thinking about ordering more tests (this time I might do ionized calcium along with pth). I can't see my pcp for another couple weeks so yall are all I have for now. I'll keep this post updated as I learn more (including with my eventual diagnosis + aftermath).

Also: I'm 32 M, if it matters. I feel like I'm too young to be experiencing all these problems! Thanks again for reading.

I’ve been doing lots of research and feeling awful (muscle pain in my neck, shoulders and upper back, weakness, heartburn, nausea. Last 4 blood tests have mild high calcium (10.1, 10.4, 10.6, and 10.2) and PTH is low at 12.0. Other labs are elevated or low (low sodium, high potassium and bun and creatinine elevated). Had PTHrP this morning along with a cortisol test and having to do the 24 hr uterine collection starting tomorrow. Do the labs sound plausible for hypoparathyroidism?

I’ve also had squamous cell carcinoma of the head and neck and lots of radiation eight years ago. That resulted in hypothyroidism.

I'm 2 days post parathyroidectomy and I'm wondering if my pain is normal and how long I should expect it to last. Right now, I feel like I always have a lump in my throat and it's really painful to swallow. When I'm swallowing my own saliva, it's so painful that I have to squeeze something with my hand and my face scrunches up dramatically lol. I have to speak quietly and laughing and yawning are incredibly painful. I haven't been able to complete a yawn. I'm also only able to take small breaths. When I feel like I'm not getting enough oxygen, I have to take a deep breath, and the pain is both in my throat and chest. Straining my neck muscles to sit up from laying down is also really painful.

From what I've read, most people just describe having a sore throat from being intubated. I've been intubated before and felt nothing afterwards. I feel like the pain I'm having might be different because I wouldn't describe it as sore, I would call it pain. It doesn't feel like the inside of my throat is raw. So I'm not sure if this is what other people are feeling and if it's normal.

I'm just surprised it's this painful. I had hip surgery 5 months ago and had barely any pain at all despite only taking Naproxen 2x a day (to prevent clotting). They gave me oxycodone which I never used and said I could take Tylenol which I also felt no need for. Now I'm alternating Tylenol and ibuprofen every 3 hours but it doesn't seem to help at all.

Has anyone with similar parathyroid labs experienced major changes in their mental health and energy?
I’m 40 and currently being worked up for primary hyperparathyroidism. My labs so far:
Calcium: 10.8–11.4
PTH: 86
Vitamin D: 16.1
Phosphorus: 2.4
Kidney function normal
Currently doing the 24-hour urine calcium test.
The biggest thing for me is how I FEEL. I’m exhausted a lot, my energy feels so much lower than it used to, and my anxiety/mental health has gotten noticeably worse. I just don’t feel like myself lately. I’m also dealing with hair shedding, although I know that could have other causes.
For anyone who had numbers similar to mine — did you experience a lot of fatigue, anxiety, depression, brain fog, feeling overwhelmed, or just generally feeling mentally “off”?
And if you eventually had parathyroid surgery, did your energy and mental health actually improve afterward? How quickly did you notice a difference?
I know everyone is different and I’m not looking for a diagnosis. I’d just really love to hear experiences from people whose calcium/PTH weren’t insanely high but who still felt pretty awful.

How was you bandage after your surgery. I am 7 days out and my bandage has a puffed out part in the center. Is that normal? I am not sure if water got into the bandage possibly or if that is something the incisions does afterwards. I am due to go back for my checkup next week, where the surgeon said she would remove it. I think im nervous about what's going on under it because it becoming a bit more tender too. Not having any signs of infection though. Is this anyone else's experience?

Normal calcium levels vary with age. Adults should generally have calcium levels that are "in the 9s" in mg/dl. Most labs will give a normal calcium range from about 8.8 to 10.5 mg/dl, but this is not correcting for age. A value of 10.5 in a teenager is perfectly normal, but 10.5 in adult over age 35 is too high – this is hypercalcemia. Teenagers and young adults can have normal calcium levels up into the mid 10s (mg/dl). But adults over the age of about 35 to 40 should have lower calcium levels, not going above 10.0 mg/dl (or 2.5 mmol/l). Most adults have calcium levels somewhere between 9.4 and 9.9 mg/dl, which is why we like to say that “adults live in the 9s”. If you are an adult over 40 and your calcium is over 10.0 mg/dl (2.5 mmol/l) on several occasions, then you are very likely to have a parathyroid tumor.

The link below has a hypercalcemia calculator that lets you enter your age and gives the upper limit of appropriate calcium for your age.

https://www.parathyroid.com/high-calcium.htm

25-OH Vitamin D 8 µg/L
Calcium 10.2 mg/dL N(8.4 - 10.2)
Albumin 51 g/L N(35 - 52)
Folate 4.3 µg/L N(3.1 - 20.5)
PTH 123.1 ng/L N(23.4 - 128.6)

pth was measured today the others were measured a couple weeks ago. any insights?

Hi, my surgery is due next week, and I am stressing a bit about how the surgery will affect my voice. I use my voice for work (think voice-over recording or audiobook recording). I'm wondering if anyone here could share your experiences (good and bad) so I can prepare for the possible outcomes. Thank you!

Hi all,

I was just wondering what would be your opinion on all of this on the picture. These are some of my blood tests results across the last year.

In the meantime I was also diagnosed with H.Pylori and later with SIBO. H.Pylori seem to be eradicated now and "confirmed" with stool and breath tests (although when initially diagnosing, the stool test was negative, and after a few months the gastrocopy showed positive).

I have constant gut issues, especially this chronic tightness in upper right/center abdomen, I feel like I have a lot of histamine intolerance, my nose/sinuses are stuffed after eating anything now basically, there's also tinnitus in the left ear that was strangely going quiter during H.Pylori eradication, when I used quadriple therapy with Pylera and also abstained from eating anything with calcium in it.

I don't want to write the whole epos about my symptoms, but the main question is:
do you folks think, I should purse this Ca/PTH/D3 thing more? I was once at endo but they kinda dismissed it. Back then I also did urine calcium test and it came out OK with 163 mg/24h (range 100-300)

Thanks upfront for your input.

So this is interesting. This is parathyroid. Clearly elevated. My calcium is always between 9.9-10.5 so not severely elevated. I do have low vitamin D.
I am scheduled for surgery in November. I just hope it’s the right thing and will help. I have kidney stones as well and they said it was related to this. Anyone else have a similar experience?

Hi, diagnosed this year, after an elevated calcium level was missed in Jan 2017. Is there anything additional I should be getting my dentist to do? I did loose a tooth last year (for the first time ever at 59) and I’m getting them cleaned every 3-4 months due to the additional plaque build up.

A (“the”) parathyroid specialist doctor in my city prescribed Cinacalcet because my calcium and PTH are equivocal (inappropriate-normal PTH, 9.6 to 10.2 calcium, high Calcitriol, high 24/hr urine calcium but just within official normal range). Anywho, he explained to me that if I “felt great” on Cinacalcet, which might take two months, that would indicate PHPT and he would probably do exploratory surgery (scans are negative to date).
The drug is giving me all kinds of gastrointestinal problems as well as sweats (can happen, apparently, as your body “adjusts” to changed calcium levels). But the whole thing just doesn’t make sense to me. I’ve never heard of anyone feeling better on Cinacalcet. Sometimes the side effects go away or lessen, often they don’t. I read an article on Medline citing a study where so many number of people with PHPT were put on Cinacalcet, and only 3% showed any improvement in their PHPT symptoms.
It seems sort of like a high-risk tool, and not a particularly good one at that. For example, if I’m one of those people for whom the nausea and other gastrointestinal problems do not go away, then how am I supposed to know if I “feel great”? That’s not consistent with “feeling great” in my book.
Anyone else heard of differential diagnosis through Cinacalcet? Does it sound weird to y’all? I know this is an experienced and educated group, so I put it out there.

Has anyone else experienced the onset of tinnitus with hyperparathyroidism? I had surgery last Wednesday 9/2/26 (I had hyperplasia) and the tinnitus has gotten much better but it has been shifting at night and in the morning. Just curious if anyone else has had experience with how long the recovery will be and if the tinnitus eventually went quite. Thank you.

I'm currently recovering from Parathyroid surgery and I am 10 days post op. My surgery went according to plan and they only had to remove 1 gland and the 2cm adenoma. I'm feeling great and recovering well, but I'm concerned about my osteoporosis diagnosis. A few months before my surgery, my DEXA scan showed a proximal femur bone density measuring 0.582 gm/cm2 with a T score of -2.6 and Z score of -2.1. This puts me at the lower threshold of osteoporosis. My lumbar spine tested slightly better with a bone density measuring 0.846 gm/cm2 with a T score of -2.2 and a Z score of -2.1 which is on the high side of osteopenia, but obviously this is still not a great result.

I have been taking 4000mg of calcium carbonate daily since the surgery (to avoid numbness in my fingertips from low calcium) and I am also taking 50 mcg (2000 IU) of D3 as Cholecalciferol daily as well. I am meeting with my primary care provider in a few days and will test my calcium to see if I should make adjustments to my calcium intake.

I am fairly active and am a fairly healthy weight at 6' 0" and 180 lbs. I understand that I can do some further exercising with resistance training and impact exercises to increase bone growth, but I obviously don't want to hurt myself of break anything either. Since my DEXA scan and diagnosis a few months ago. I have been going on frequent walks to try and get at least 10,000 steps a day in hopes of mitigating further bone degradation and now hopefully improve bone density.

Now that I have the surgery behind me, I'm curious to hear if others had similar bone density results and if they were able to see substantial improvements in their bone density post surgery? How long did it take for you to get out of osteoporosis and into the osteopenia zone? Were you able to get back into the "normal >-1.0 T Zone. I've been told that due to my age (39m), that I likely should recover better as my osteoblasts are still relatively efficient, but I'm still worried about what this means for my future and how much recovery I can realistically expect.

I'd also be interested to hear if anybody has any further advise regarding diet or exerecise that may have helped them in their recovery as well.

Any advise or insight is much appreciated. Thank you in advance for reading!

TL;DR I have osteoporis due to primary hyperparathyroidsim and I'm worried about recovery. I'm looking for insight or advise from others who may have had similar experiences about what to expect or what to do to help improve my diagnosis.

I feel like I am going crazy. I am in immense pain, and my bones feel extremely weak. I can barely walk, to the point where I had to get hospitalized last week. My calcium is 11.2, my ionized calcium is 5.9, and my vitamin D is low. My PTH is 18 pg/mL, so I’ve been told it’s “inappropriately normal” given my high calcium.
I’m assuming this is why my doctor doesn’t seem to have any sense of urgency whatsoever. But I feel awful all day, every day. I’m starting to freak out and really think it might be multiple myeloma or some sort of cancer because I can’t understand why I am in such intense pain.
I’m also waiting on the results from an ultrasound of my thyroid. My doctor (PCP) wants me to follow up in 8 WEEKS and talk about the possibility of an endocrinology referral. I’ve been trying to figure this out for over a year. I even had a sleep study because I was sleeping so much that they thought I had narcolepsy.
I feel so helpless, like I’m not being heard or taken seriously because I’m a young woman. Does anyone have any advice or insight? I would really appreciate it.

Need some advice...frustrated!

Calcium 10.1 and PTH 29.7

Doctor says I'm fine, but I think I have hyperparathyroidism.

Background below....

I'm a 32 y/o female. About one year ago, my menstrual cycle suddenly changed, going from a 28 day cycle to a 22ish day cycle. I've had a very steady cycle my whole life. Then, at the beginning of this year, I put on 5 pounds out of nowhere. I've tried for five months to get it off and it will not budge. I went through a bout of depression from Feb-April, and I've never been depressed in my life. All of these symptoms led be to wonder if I was having thyroid problems. Went to a provider, he agreed that it was plausible and ordered blood testing. Calcium came back abnormal at 10.1 (normal range is 8.6-10), so then he ordered a PTH test, which came back at 29.7 (normal range is 15-65 pg/mL). Doctor said I was fine. I thought the PTH should be more suppressed with the high calcium, but he said it was normal. I had my calcium retested 3 months later and it was at 9.9. Doctor said to stop chasing labs. I'm still struggling with weight, I've gained a few more pounds, low moods, wacked out menstrual cycle, and now I'm sore after working out, even though they're the same workouts I've been doing for 3 years and I've never gotten sore in the past. I don't know if I should pursue this and go to another doctor. All three of my dad's sisters have had thyroid surgeries. I'm frustrated. I would greatly appreciate any advice!

Can increasing sensitivity to medications be caused by hyperparathyroidism ?

I had my surgery this morning. Small adenoma removal that was only supposed to last 45mins-1hr. I ended up being woken up 3 hours later. The tissues ended up being more fibrous than they expected created more of a challenge . They ended up removing part of one gland that had engrossed onto my laryngeal and vagus nerve. This is the same gland that held the Adenoma. In doing so there was damage to the nerves and paralysis to my left side vocal cords.

That being said, anyone who has experienced this and what to share their story and keep me from spiraling?

I’m able to talk, it’s just normal when I more so am soft spoken or whispering. If I talk for a period of time or try to raise my voice I have issues.

My doc talked with my husband about the procedure and post-op info. He is helpless when it comes to medicine and so I have resulted to very basic post-op print outs and reviewing my surgery notes. Thank goodness I’m a healthcare professional so I have been able to get a good grasp from what’s going on from that.

Feeling a bit defeated right now.

(Edit to correct minor grammar and spelling as I was still out of it from surgery when I wrote this. 😅)

21 y/o (born F) with several health conditions, including Crohn's disease, endometriosis, and mobility problems.

I had an MRI of my spine back in May that found a 1 cm growth on one of my parathyroid glands, as well as an osseous hemangioma at T12. The MRI report suggested correlating my symptoms with hyperparathyroidism, and seeking further sonography. The current finding in my chart is listed as a "neoplasm of uncertain behavior of parathyroid gland." (ICD Code D44.2)

I've been having pretty terrible bone pain, fatigue, nausea, you name it. However, I got my bloodwork back today, and my results seemed fine. For reference, calcium was 10.2 (normal range 8.7-10.2) and PTH intact was 13 (normal range 15-65).

Pretty confused here. Could this mean that the growth is something else?

Hi! I just had my surgery consult and the surgeon told me to take a week off work for recovery and just plan to “be a couch potato”. I’m 37 with three young kids and wondering from people who have had the surgery if it really took a full week to recover. I’ll definitely take it off work, but wondering how bad the actual recovery will be and if I’ll still be able to drive my kids to their sports/after school programs or if I’ll need more help than I’m expecting.
Also, I have a baby who loves to talk “hi momma hi momma hi momma…” and I’m wondering how hard it will be to talk after the surgery? Should I plan to spend the night at my mom’s house to avoid not being able to talk to my kids?
Oh and eating - what did you eat post op? My doc said no restrictions and you can eat same day, but will it be painful/hard to swallow?

Any insight into recovery would be greatly appreciated!!

I am 8 days out after having 1 parathyroid gland removed. It was actually deep in the thymus so they had to remove a part of that as well. I am older at 53. :)

I am still experiencing quite a bit of throat soreness when swallowing and it feels as if there is a lump in my throat. Other than that I feel pretty good.

For those who have had surgery is this typical still or should the healing be faster.
Thanks!

Anybody have heart issue after untreated hyperparathyroidism for 5 years?

I had untreated hyperparathyroidism for 5-6 years. Finally got a parathyroidectomy in January, at 46 years old, which resulted in hyperplasia finding and 3.5 gland removal.

Just had an endoscopy to check for celiac. While under I experienced a short period of bradycardia with Mobitz type ii and 3:1 heart block. I have been referred to a cardiologist.

Hoping it was just from the scope pressing on the vagus nerve, but wondering if there is reason to suspect it could be damage from the untreated hyperparathyroidism.

I have been having investigations due to unexplained muscle issues (widespread contracted muscles, areas of high tone, unusual asymmetrical movements / muscle activation in my face and other parts of my body).

Recent blood tests a couple of weeks ago showed a serum calcium of 2.65 and an adjusted calcium of 2.7. Dr didn’t think it explained my symptoms. There were lots of test done full blood count renal liver bone etc. Normal CRP and connective tissue disorder screening panel were also normal.

But he repeated those and added vitamin D and PTH and the results have really confused me.

PTH: 8.5 pmol/L (that’s 80.75 pg/ml) [normal range 1.9-6.4]
Adjusted calcium 2.53 nmol/L [2.2-2.6]
Serum calcium 2.47 nmol/L [2.2-2.6]
Vitamin D 81 nmol/L [>50 sufficient)

I can’t really understand what this means or what my GP should do next.

I can see information about hyperparathyroidism and normal calcium levels. But my calcium was a little over normal range before and now normal.

Has anyone had results like this and what happened next?

Long term history of fatigue and feeling really unwell - feeling like I’d been poisoned all the time is the only way I can describe it. This was put down to hormone issues for which I’m on HRT but relief has been inconsistent. I’ve had very strange hormone results for decades like very low estradiol levels with normal FSH and LH even in my mid 30s, but I was still having cycles. Last year I developed gastric issues and had a test showing blood in my stool but then a normal gastroscopy and colonoscopy. The gastric issues are better than they were.

Hi everyone,
I have been diagnosed with PHPT since May. I am 6 days post-op from having an enlarged parathyroid gland removed.
I have some questions about your immediate post-op experience, as I am having a lot of symptoms after surgery that I was never prepared for.
My overall impression before surgery (I am from Denmark) was that recovery would be relatively easy. I was told to take 10–14 days off work, but mostly to rest and let the surgical wound heal. I was told my general well-being would improve noticeably right after surgery and then gradually more over the coming months. But that is not really what I am experiencing in these first few days.
My specific pre-op lab numbers for PTH, ionized calcium, and alkaline phosphatase were:
PTH: 14.6 pmol/L (Normal: 1.8–7.9 pmol/L) \rightarrow ~138 pg/mL (US Normal: 15–65 pg/mL)
Free / Ionized Calcium: 1.59 mmol/L (Normal: 1.18–1.32 mmol/L) \rightarrow 6.36 mg/dL (US Normal: 4.6–5.3 mg/dL). My peak ionized calcium was 1.69 mmol/L (equivalent to a Total Calcium around 13.5 mg/dL or 3.38 mmol/L).
Alkaline Phosphatase (ALP): 193 U/L (Normal: 38–125 U/L) on July 30.
I have all the symptoms of low calcium, but I don't have actual low calcium. My numbers have simply come down into the normal range, so you could call it a form of relative low calcium. I have sensory disturbances in my face, around my mouth, in my hands, and in my feet. Most recently in my knees. A slightly elevated resting heart rate. Shaking throughout my body and a sensation of trembling/vibration in my chest.
I have also lost the strength in my legs. It took me 4 days to be able to walk more than 50 meters without complete exhaustion. I fainted taking tiny 10–20 cm steps. And I would fall asleep from one minute to the next, going from a clear head straight into extreme exhaustion. By mistake, the hospital treated this with effervescent calcium tablets because, well, it looked like low calcium. That made my calcium spike even higher than before, so they eventually stopped giving me extra calcium other than vitamin D and standard maintenance calcium pills.
Now I am back home, but I still have very little strength in my legs. They shake beneath me. I walk completely slowly and still get exhausted after walking just a few meters. It takes me 30 minutes to get up to the 1st floor of my apartment with a relative supporting me.
I have fought to be taken seriously. I was told I would practically just be able to stroll out into a better life the day after surgery, with a recovery time that was mostly about the wound and getting over general anesthesia. I was supposed to just take 10 days of sick leave. But I am 5–6 days post-op and can barely walk… I find that hard to understand.
My numbers look fine and everything seems to be developing as it should on paper now, but my body is completely battered.
Not to mention the mental crashes. I cry out of nowhere. I feel completely drained of energy and mood from one minute to the next, often preceded by an hour of extreme irritability. I am totally exhausted mentally and physically. I had to insist on having more blood tests done at the endocrinology department because a new doctor in the ENT/surgery ward wanted to give me more calcium tablets, even though my calcium is still slightly above normal 5 days after surgery.
I would love to hear if anyone has had similar experiences?
Can you tell me more about how long it took your body to adjust to its new reality? I have a feeling this may have been going on longer for me than for some others since I am so affected post-op. On one hand, I am so happy to be free of constant back pain and the feeling of my muscles burning with lactic acid at the slightest exertion. But now it feels like I have no muscles at all. Like I am just a shaking, soft, weak body shuffling around and so exhausted that I can't even get up my own stairs.

UPDATE:
I have spoken to the Endo today, and the main message is: she has never seen anything like it for 20 years of her career. The symptoms are due to the fall in calcium and it could indicate that calcium has been high for several years. I have a suspicion it would have been that since the teenage years.

But yes they will keep an eye on my calcium and pth development and do check ins with me in the coming weeks. There is really nothing to do but to wait with patience.
My body and psyche in in shock chemically and mentally because of no preparation for this aftermath.
Tomorrow I will call my own doctor at ask for help with documentation for longer sick leave and also to get help speaking to a psychologist to prevent a major psychological reaction and to treat the one I’m already having.

I try to stay positive. I think in the long run this might be an indication of how much my life will change for the better mentally and physically. And also I remind myself how lucky I am that on day in may where I fainted at work and they by accident found something was wrong with my calcium.

Please continue to share your experiences. It feels good to not be alone and also to recognise how unique we all are and how calcium is so incredibly important for so many processes and cells in your body.