Patient Comments: Hyperparathyroidism - Symptoms

What were the symptoms you experienced with your hyperparathyroidism?

Comment from: Tired in Missouri, 55-64 Female (Patient) Published: July 09

I first was aware that my blood calcium levels were high in 1998. My GI Dr. Had it rechecked to make sure I didn't have cancer. I was told I had osteopenia in 2003. When I had another bone scan in 2008 I was told I had osteopenia for sure. The scan done in 2003 was incorrectly interpreted and my Dr. Told me tat at that time I actually had the bones of an 18 year old. A bone scan done in May 2013 revealed significant thinning despite being on Boniva for 5 years. My primary physician had me do a 24 hour urine test which revealed high calcium. The was followed by a blood test check PTH levels which were also high. When I read the symptoms of Hyperparathyroidism I cried. I retired 2 years early because of low back pain, sciatica, and fatigue. I have headaches almost every day. I have an appointment with an endocrine surgeon 7/31. I'm praying for a surgery that will help me feel normal again!

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Comment from: luckysilver51@yahoo., 25-34 Female (Caregiver) Published: May 06

My daughter has had severe bone pain, GERD, irritability, weight loss of 20 pounds (she is only 102 pounds now) depression, lethargy, and migraines. In early March she had several fainting episodes, and was in the ER twice. I insisted her MD do more tests. He found a high calcium and high PTH level. Her PTH was originally high, in the 160s, then 145.8. She has seen an endocrinologist, who just keeps doing more tests. I must add her vitamin D level originally was only 9, and her recent D level was 19 – still low. She has been taking 2000 IU's of D a day since March. Her bone scan showed some thinning of her bones. The MD wanted to wait to see how she does before going to a surgeon. She had a sestamibi parathyroid scan but we don't know the results. He wants to do more tests. I am very worried, because she had a couple spells in the middle of the night, where she felt like she would faint. We went to the ER again for a workup and now she is wearing a Holter monitor. I think she should have the surgery soon. I don't know why the endocrinologist is dragging his feet.

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Comment from: corinne1961, 45-54 Female (Patient) Published: April 12

I am 52, but began getting kidney stones when I was young. I had gallstones as well. I've experienced UTIs, kidney cysts and a mass, heart problems, blood pressure spikes, joint pain and osteoporosis (broke my L1), extreme fatigue, low immune (sick frequently), weight gain, depression, lack of energy, can't concentrate or remember, and have high calcium. I have a number of family members on my mother's side (mostly female cousins and aunts) with similar problems. One of my relatives also has hyperparathyroidism, another who has had open heart surgery, and all have had bone loss. I'm waiting for my appointment to see an endocrinologist. I'm convinced it's familial hyperparathyroidism. And I've heard that osteoporosis is reversible once the parathyroid is removed.

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Comment from: DoubleD, 55-64 Female (Patient) Published: February 04

I felt tired all the time, had no energy and I could fall asleep sitting at the kitchen table and slowly was gaining weight. My doctor started me on Synthroid, low dose and increased it twice. I still didn't feel right. My last blood test showed very elevated calcium in my blood. If it's a simple operation to remove the bad nodes, that's what I'll do. It's no fun feeling this way.

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Comment from: DianeElizabeth, 55-64 Female (Patient) Published: January 10

I am a 55 year old woman who is presently awaiting surgery to remove another parathyroid gland. I diagnosed myself in 2010 after suffering terribly from severe symptoms of hyperparathyroidism, such as severe spasms in my legs, weakness, confusion, and more. I was hospitalized a month later with pancreatitis which was absolutely horrifying. I kept a very close eye on my labs which I insisted be done monthly or bimonthly. Then just recently I have not done it as often. A lab test in September dropped my jaw to the floor. What shocked me more than anything was that my high alk phos and calcium didn't raise any eyebrows in my physicians office until my own physician saw them. I wouldn't have know about them if not for my insistence to see the results. I've had a lot of surgeries in my life, primarily my spine, but this really upset me. It is very rare to have a recurrence and frankly the symptoms really suck. I should have it out in less than a month.

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Comment from: Kaye, 65-74 Female (Patient) Published: September 21

A routine blood test showed a high level of PTH and rapid bone loss. Then a sestamibi scan showed up the location of my errant parathryoid gland. I have symptoms of osteoporosis, fatigue, sleeplessness and aching all over. Surgery is scheduled. What I don't understand is that the calcium level has only shown to be high once.

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