Patient Comments: Hypercalcemia - Describe Your Experience

Please describe your experience with hypercalcemia.

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.

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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.

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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.

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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.

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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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Hypercalcemia - Symptoms Question: What were the signs and symptoms associated with your hypercalcemia?
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