Patient Comments: Hypercalcemia - Describe Your Experience

Please describe your experience with hypercalcemia.

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.

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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.

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

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