Patient Comments: Hypercalcemia - Describe Your Experience


Please describe your experience with hypercalcemia. Submit Your Comment

Comment from: Roger for Ann Pagram, 65-74 Female (Caregiver) Published: October 02

My wife was diagnosed with hypercalcemia 4 years ago but without finding the cause. Over the four years she has been in and out of hospital 7 times and spells between going into hospitals were getting shorter. She was scanned from head to toe, and had blood tests every 3 weeks to see calcium, protein, electrolytes, etc. Her legs would become edematous making mobility a problem. On several occasions her legs would give from under her. She collapsed and died from a pulmonary embolism with no treatment.

Comment from: Peggy , 65-74 Female (Patient) Published: July 10

After a lumpectomy I was left with a scar that looked like a knot right along my bra line. The pain from it grew as the knot grew. I went in the hospital 2 years ago for colon surgery. When the doctor asked if I had any open wounds, I told him about a leak that seemed to be oozing under my breast. Turned out the knot was from hypercalcemia and had grown all through my breast even attaching to my rib. My doctor had to leave surgery to round up an instrument used for breaking bones to get the bones out of my breast.

Comment from: Kentucky Woman, 55-64 Female (Patient) Published: February 21

I just had one of my parathyroid glands removed. My surgeon said it was a textbook case. I ended up with this surgery due to kidney stones forming and forming like some sort of monster in there. I said to my doctor that just wasn't normal and there must be a reason for the hypercalcemia and I wanted him to so some research. Rather than becoming offended, he complied and ended up sending me to an endocrinologist who sent me to a surgeon and I had the culprit removed last week. I'm feeling much better already. It really is worth it to do this. I have a nasty scar I hope will not show but time will tell. At least my depression is gone and my basic muscle aches are gone and I haven't had a headache since the surgery. Life isn't worth living in pain if you can get out of it. In fact, sitting here right now I finally feel like I can relax and breathe again.

Comment from: Margaret, 65-74 Female (Patient) Published: December 19

I have had a high calcium count for 10 to 15 years. Last blood work showed 10 plus. I never paid too much attention to this problem of hypercalcemia, although my doctor ordered a test for my parathyroid. It wasn't until now that I became concerned, because I was diagnosed with stage 2A breast cancer, which is being treated successfully. I also have many of the other symptoms listed in the above report.

Comment from: Dee, 55-64 Female (Patient) Published: August 03

My doctor asked me years ago if I was drinking a lot of milk because my calcium was a little high. He should have immediately done a PTH blood test to check the parathyroid. For years I couldn't figure out why I was so irritable, my bones hurt, my heart raced and my blood pressure was high, etc. Finally I told him to do a simple PTH blood test and he also ordered a sonogram. It did turn out to be hyperthyroidism. I had surgery and had the benign tumor removed. The calcium levels came down almost immediately and I am a new person! If you are told you have hypercalcemia tell your doctor that you want a PTH blood test. High calcium in the blood is not normal even if it's a little high.

Comment from: cookieb, 75 or over Female (Patient) Published: August 15

I began having depression due to extreme pain in my bones, felt dizzy, and had calcium deposit in my shoulder. I went to my tribal clinic where the doctor said I had hypercalcemia, my blood calcium was in the high range, and he believed I had hyperparathyroidism. I told my regular doctor what he said, and well, my regular doctor said my tribal doctor was wrong. But after about a year of nagging he prescribed a scan, and one adenoma was found on one parathyroid. But because of my age nothing was going to be done. I decided to dump him and take responsibility for myself, got into hospital and within a month had 3 1/2 parathyroid glands removed due to tumors. After about 2 months I was all recovered and felt reborn. Today I am 81 and no problems.

Comment from: linnie, 65-74 Female (Patient) Published: July 01

I am at my wit's end with calcium levels almost always elevated, from 10.6 to 11.0, and an occasional 12.0. This hypercalcemia has been going on for about 10 years! I have seen 2 endocrinologists who simply say it must be my normal. My general physician (GP) is still telling me my levels are making me sick. I am so tired of feeling sick; upset stomach and nausea always, headaches now, aches, depression, fatigue, loss of appetite and loss of interest. I just never feel right. My level last week was 12.0. I have had breast cancer. Last year I had a 24 hour calcium urine test. It was normal. My GP thinks he has covered everything. I just can't stand to live like this. I have tried antidepressants, no luck. Also, in answer to another post taking lithium, it definitely elevates calcium levels.

Comment from: Nadine, 35-44 Female (Patient) Published: June 16

I encountered my first kidney stone on our family trip to San Francisco and didn't have a clue what I was experiencing. The pain finally subsided and I passed the stone without evening know what I had. That was the start of a two year journey to figure out what was causing my kidney stones. I started having them once a month and as time progressed I was visiting the emergency room 2 or 3 times a month to have the stones removed; ouch! I saw every urologist there was in my city and none of them ever thought of a diagnosis for me. It wasn't until my regular doctor went on leave I saw her stand-in, at my wits’ end saying I can't live this way with numerous trips to the emergency to have stones surgically removed; I was exhausted, depressed, and had sore joints! She immediately said I think I may know what's wrong with you and sent me for a blood test; a box on the form that could have been marked off so easily. It came back with hyperparathyroidism; finally a diagnosis. But it took an emergency ride to the hospital 6 months later to have them finally remove the tumor on my gland. With hypercalcemia the calcium was at toxic levels in my system and was starting to shut down my kidneys. Once they removed the tumor I finally felt a bit better but it really took close to a year to feel normal again. Get second or third opinions if needed! Good luck to all.


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Comment from: Im_the_mom, 45-54 Female (Patient) Published: May 07

I have hypercalcemia, with a calcium level of 10.8. It has been elevated, anywhere from 10.4 to 11.0 for several years. In my most recent test vitamin D is quite low, at 19 with a range of 30 to 100 being normal. My PTH is 22 with a normal range of 12 to 77. I had a total thyroidectomy 8 months ago, and am on 150 mcg levothyroxine. I am fatigued, have joint pain, body aches, memory issues, constipation, and some slight balance problems. I'm a 52 year old female, have never had cancer, and am tired of feeling bad. I can't find any information on a condition that would cause low vitamin D, low normal PTH and high calcium.

Comment from: Debptmom, 45-54 Female (Patient) Published: May 21

My problems of hypercalcemia began with 3 parathyroid glands being removed and the 4th damaged in surgery. PTH is 2. Calcium level is 11 now. But after 2 days basically unconscious at home, I was taken to hospital. After fluids, calcium was still 11.5. I was in ICU 5 days, didn"t know my family"s names, had difficulty talking, a lot of confusion. I’m going back to a major hospital to see a better endocrinologist.

Comment from: JFaulk, 55-64 Female (Caregiver) Published: March 27

My sister has had a recurrence of her ovarian cancer and it has metastasized. One of the effects is malignant hypercalcemia which has a poor prognosis (months, if not weeks). She is extremely disoriented much of the time, has fallen several times (we are now arranging for palliative care after finding her on the floor of her apartment) and frequent episodes of tremors and mild seizures. She is not in pain, but her waking and dreaming state are so confused that they are almost simultaneous. She drinks six liters of water a day, but her skin is like sandpaper. And she sleeps almost 75% of the time - we are hoping that she will die in her sleep without pain - the only treatment she is able to receive is saline IVs which help control the tremors and some of the disorientation.

Comment from: Flower, 0-2 Male (Caregiver) Published: October 07

It was my son who was diagnosed with hypercalcemia when he was only 2 months old. He had no underlying health problems and this only came to light when he had a fit at home and couldn't breath and was shaking. By the time an ambulance came, he had gone as white as a sheet, very limp and had a vacant expression. The ambulance crew thought it was probably just a temperature convulsion but he was rushed to hospital where test after test was carried out over the course of a week. He had an ECG, an EEG, an ultrasound on his head and heart and had countless blood and urine tests. The only thing that kept coming back as abnormal was his high calcium levels which was causing him to have 5+ of these 'episodes' as the doctors called them, a day. To try and help with the level of calcium, which was only in his blood and not his urine, he was put on a drip for 24 hours to try and dilute it. It didn't work, so it had to try and be controlled other ways. My son was put on a special formula called locasol and he wasn't allowed any high calcium foods when we started weaning. Both myself and his dad were tested to see if we had passed on the condition, but those results came back negative, so we were told our son had Familial Benign Hypercalcuric Hypercalcemia. The 'episodes' lasted until he was 6 months old with as many as 7 of them a week. With hypercalcemia in children there is usually developmental problems, but thankfully my son was walking when he was 9 months old and has developed brilliantly, which really surprised the consultants. Although his calcium levels are still high he was officially discharged from hospital when he was one and was gradually introduced to a normal diet, and the only sypmtom he seems to have now are bone aches which I am trying to find out more about. He is nearly 2 now and you would never know, just looking at him, what he has been through or that he even has this condition.

Comment from: Audrey, 75 or over Female (Patient) Published: January 21

My calcium in a normal blood test runs usually 2 points above normal range. This has been constant for about 10 years. I wonder if this is harmful.

Comment from: kitty, 75 or over Female (Patient) Published: January 24

For a long time I had been feeling drained. I was also under a lot of stress for a long time and when I developed what I termed flu symptoms (achy bones, headache, extreme sleepiness,) except for any respiratory or fever symptoms I was rather stumped, but did not care since all I wanted to do was sleep. I had some nausea, loss of body control in that I staggered around like a drunk and a general feeling of fatigue. I did not eat much, mind was out to lunch until my children drug me into the emergency room. Spent 5 days in hospital on double saline drips and my kidneys cleaned my blood. Calcium level was extremely high. Has been normal since. Maxide seems to be the fault, a diazide diuretic. Now, no calcium supplements, and I am on another diuretic.

Comment from: coookemstr, 45-54 Male (Patient) Published: August 17

I spent most of the month of July in the hospital. It started out with a 5mm kidney stone in the right kidney and I know have three to four more smaller ones in the same kidney. I am 52 year old male with no family history of kidney stones. On July 2, I was admitted to the hospital with severe tremors that escalated into full body convulsions. The doctor said that it might be conversion disorder with Hypercalcemia underlying. My Primary doctor disagrees with the conversion disorder as she has told me that my calcium levels are so high they are almost off the scale. I have also had three shoulder surgeries on the right shoulder due to excessive growth of bone spurs. I am currently being treated with Xanax three times a day to help control the tremors while I await further testing.


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Comment from: calgal, 55-64 Female (Patient) Published: June 22

My internal medicine doctor diagnosed me with hypercalcemia this past week. I can't believe there's anything wrong because I feel as good as ever! My doctor kept asking if I had pain anywhere and did a bone scan, which showed nothing. Now my doctor's ordered a bone density test. I've been on lithium for 14 years or more and am wondering if that has anything to do with it. My doctor has mentioned surgery, but I'd like to know if there's cancer anywhere in my body that may be causing the high level. So, for now I feel fine with no symptoms, just a high calcium level, which I thought was to be desired. I hope everything will be ruled out before surgery for this.

Comment from: MJ in St Pete, 45-54 Female (Patient) Published: June 18

I was diagnosed with hypercalcemia several years ago. Turns out it was the result of a parathyroid adenoma, or parathyroid tumor. I had the tumor removed, and it took awhile for the calcium level to regulate. After the removal of the bad parathyroid, I had to take calcium supplements by the clock until the remaining parathyroids started working. Was very touch and go, I felt so sick, but now I'm fine.

Comment from: Sylvia R, 55-64 Female (Patient) Published: November 05

Serum calcium is 10.0 and Vitamin D is 127. Currently taking Vitamin D 50000 unit oral capsule due to a deficiency. Have a family history of kidney stones, nephrosis, and heart disease. I also have hypothyroidism that is being treated but continues to be an issue (tests still indicating values are not normal). I also have numerous calcifications in breasts which are being monitored. Stopping Vitamin D.

Comment from: 55-64 Female (Patient) Published: September 24

I had a calcium level show up on lab tests three times in the high error range. Which isn't very high at all. I didn't think I had any symptoms, except that I remember my mother was always telling me to stop rubbing my legs. My legs felt the same way as when I was young and had played too hard. My parents would have called it growing pains. It made my legs feel better to rub them. I also noticed my chest was very sensitive when I did monthly breast exams for cancer. It turns out that I had an adenoma of one of my parathyroid glands. Later, I discovered a male cousin had adenomas on each one of his four parathyroid glands. I had surgery to remove the adenoma and had immediate relief following that surgery for the constant leg aching I had been experiencing for two years.

Comment from: mamaof2, 3-6 Female (Caregiver) Published: May 26

My daughter is 3 yrs old and has hypocalcaemia, nephrocalcinosis, and hyperoxaluria. The nephrocalcinosis was discovered by ultrasound that was performed for a different reason, it was an incidental finding. We were referred to a kidney specialist. Testing showed high calcium in both blood and urine and oxalate in the urine. RTA, MSK and Hyperparathyroid were all ruled out. All endocrine disorders were ruled out. She also has the tremors some have previously mentioned here, with no apparent reason. We have seen a neuro and had an EEG done. Interesting to hear others have experienced this too. She has very little appetite, no weight gain, large abdomen, enlarged lymph nodes in her abdomen, low muscle tone, and low bone density.