Patient Comments: Hyperparathyroidism - Symptoms and Signs

Question:

What were the signs and symptoms you experienced with hyperparathyroidism? Submit Your Comment

Comment from: Tracy2, 25-34 Female (Caregiver) Published: December 14

I went one whole year with Bartholin cyst and I didn't even know I had it. The cyst was very painful. First time it was too big to drain on its own so I had the Word balloon for 4 weeks. The second one I had drained in the emergency room, but now once I see one forming I don't wait! You can lance it yourself with 20 minutes in the sitz bath and buy some itch ointment, it will help bring the pus to the surface.

Comment from: Doug, 45-54 Male (Patient) Published: November 07

My symptoms of hyperparathyroidism are fatigue, headaches, muscle stiffness especially in shoulders and lower back, general aches and pains, brain fog, memory issues, terrible GERD, anxiety, palpitations and PVCs (premature ventricular contractions), depression, general sense that something is wrong, moodiness and short temper, shortness of breath, withdrawal from activities, teeth clenching and grinding, and interrupted sleep patterns. I have low vitamin D.

Comment from: Kara, 65-74 Female (Patient) Published: July 17

I am taking Tymlos for osteoporosis. I experience all symptoms of hyperparathyroidism. I also do have fibromyalgia. I have pain in joints, electric shocks in bones, can barely stand on my feet especially.

Comment from: CompuCat, 55-64 (Patient) Published: July 06

My symptoms of hyperparathyroidism started with extreme pain deep in my left calf. I was fearful that I had bone cancer but didn't have insurance. After that I had to urinate every hour to every 1 1/2 hours. I was always exhausted and I blamed it on not getting past REM sleep into that deep, restful sleep. I'd come home from work and go to bed, then wake up and go to work. I'd even nap in my car at lunchtime. My muscles started to weaken. I had constipation and needed Dulcolax 3 or 4 times a week. I had kidney stones often.

Comment from: sunshine, 55-64 Female (Patient) Published: February 02

My diagnosis is primary hyperparathyroidism. Previous diagnosis was fibromyalgia. I have pain throughout, shoulders, legs and feet, bowel problems, IBS (irritable bowel syndrome), terrible change, brain haziness, and numbness in hands and feet. I could hardly walk at times. If it is high calcium, go see an endocrinologist so they can take it further. High PTH (parathyroid hormone) and low vitamin D. High calcium is never good; 10 plus for a 58 year old person is not good. If you have these symptoms, the parathyroid gland(s) need to be removed. Hypercalcemia which this is called is dangerous. Much more dangerous than fibromyalgia, but when gland is removed you are cured. There is no cure for fibromyalgia, only managed care.

Comment from: Hazeleyes, 55-64 Female (Patient) Published: July 03

I was told by my nephrologist that I had too much calcium in my blood because of hyperparathyroidism and that I had growths the size of rice.

Comment from: Zogbert, 25-34 Female (Patient) Published: November 15

First thing I noticed was weight loss. It took another year before I began to have an odd feeling in my upper right abdomen. It was another six months before that sensation turned into pain, and my stool changed. It took another couple of years for me to finally be given a hydrogen breath test that confirmed SIBO (small intestinal bacterial overgrowth). Lots of tests, lots of specialists, lots of bills, and I'm still sick. Ugh!

Comment from: 45-54 Female (Patient) Published: January 20

I recently changed by physician later last year. I was diagnosed with primary hyperparathyroidism with 4 consecutive increased calcium and PTH levels. I had a physician who was keeping an eye on it. The endocrinologist was upset about that. I had all the testing done and I am scheduled for surgery this Friday. I had really bad bone pain that would wake me up out of a sound sleep, constipation, weight gain, just not feeling myself, depression, mental fogginess, word searching, and increased fatigue. I really can't wait to feel better!

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

My experience with deep vein thrombosis began with a foot and ankle injury. My ankle, my foot and the bottom half of my leg swelled every day. My toes went purple, my foot went ice cold, numb and had a burning sensation. Cramping in my leg and a constant deep pain was also present. I was on T3s which helped a little, but the side effects like having a problem going to the bathroom was a big issue. A gentle overnight Ex-Lax solved that problem. Later it was discovered, and I'm talking three weeks, that I had a huge clot in the main artery in the groin of my right leg. I am now on warfarin for the next six months to prevent any more clots forming. If you have problems walking long distances with cramping, burning and pain in your legs, I urge you to seek medical help. Chances are you have a clot or decreased circulation to your legs. Clots can break free if untreated, travel to your lungs or heart and kill you. Don't neglect or dismiss the warning signs. Your body is trying to tell you something is not right.

IMAGES

Hyperparathyroidism See a medical illustration of the thyroid plus our entire medical gallery of human anatomy and physiology See Images
Comment from: Concerned, 65-74 Female (Patient) Published: July 14

I had surgery for hyperparathyroidism about 10 years ago. I have started having the same symptoms as before the surgery. I have been told my calcium levels are near high but still considered normal and that my hormone is near normal. I have lots of muscle pain and bone pain. I get depressed and anxious a lot but try to keep going. I am wondering if I should see an endocrinologist for more blood tests. I also have lots of gastric problems.

Comment from: TaylorRay, 45-54 Female (Patient) Published: March 04

With diagnosis of Addison's disease (cortisol levels were 2.3 on prednisone) changed medicines to hydrocortisone and did a 24 hour urine collection, scan and blood test to discover hyperparathyroidism. Symptoms include terrible memory, argumentative temperament, feeling sick with indiscriminate aches and pains, kidney stones, and the loss of most of my teeth over a five year period despite extensive dental care. I can't wait to have surgery and feel better!

Comment from: DrCD, 55-64 Female (Patient) Published: July 07

I have had kidney stones for about 10 years, 3 lithotripsies, osteoporosis in wrists and ankles, osteopenia in spine and hip. My day usually takes a turn by 1:00 or 2:00 in the afternoon when I get very tired and have no energy at all. My bones often ache deeply like a toothache but not usually in the same spot each time, can be in shins, thighs, groin, hips and can sometimes stop me in my tracks it hurts so badly. I have joint pain also but again not in the same joints every day. My parathyroid hormone (PTH) has ranged over the last 6 months from 79 to 98. My calcium ranges from 9.5 - 9.8 which is in the normal range so my endocrinologist has me on a watch and wait path for the next 6 months. I would not say that I have depression but I have to really work hard to stay positive because I am so exhausted, have so much pain so much of the time and just feel old. Because my calcium is normal my endocrinologist does not feel that my symptoms are connected to my high PTH.

Comment from: cindy, 55-64 Female (Patient) Published: May 12

My hyperparathyroidism came as a total surprise. My calcium blood levels have been normal all through this process 8.6 being the highest. My doctor just decided to check my parathyroid hormone (PTH), which came back at 232, off the charts. I have had depression and anxiety for several years and take medication for it, I had a large kidney stone a few years ago with safe removal but the urologist said not to take calcium supplements ever again. My hair has been thinning but thought that was an aging problem. I have not been able to see a specialist, I live in a very small area of NY State. I don"t know how afraid I should be.

Comment from: Annhf, 55-64 Female (Patient) Published: June 01

They just found I have hyperparathyroidism and the endocrinologist wants to tweak the thyroid medications but in the meantime I've developed excruciating left jaw pain.

Comment from: Trish, 55-64 Female (Patient) Published: April 16

I do not have all my blood level results in but have been told that my PTH is high and the calcium is low. The PTH blood level has not been taken in years and when I tried to mention this to a doctor they just kind of dismissed it. I have been feeling tired, thirsty, I don"t feel like doing anything, my joints ache through hands and sometimes legs. What if it goes untreated for many years, then what! I had one ultrasound about 10 years ago and the gland was enlarged but no doctor really did anything about it. I wonder how serious this hyperparathyroidism can be!

Comment from: Pineapple623, 45-54 Female (Patient) Published: January 31

Got kidney stones in September - passed those - got more in November had them blasted - just went through another round of stones in January - my urologist suspected a hyper-parathyroid - he was right. I have a terrible back ache, irritable, very tired, achy all over, no memory - cannot concentrate...GERD. Going to an ENT who can help me - the endocrinologist I went to was worthless. Lots of them never see a hyperparathyroidism case for years at a time - so check out your doc before you go.

Comment from: JennC, 35-44 Female (Patient) Published: November 16

I was diagnosed with a tumor on my parathyroid. My calcium levels had been high for years, but none of my doctors took the time to check it out until I moved to Florida. It did not show up on the sestamibi scan, so do not take the radiologist word it's not there. Symptoms: sleeping 14 hours a day and still tired, severe memory loss (my husband said he repeated things many times and then I would ask again as if we had never discussed it), 1 - 2 kidney stones per month. Took lots of calcium after the tumor was removed, I'm 2 1/2 years post-op and feel great.

Comment from: canadagal, 55-64 Female (Patient) Published: November 08

I have been diagnosed with a parathyroid adenoma and am having surgery in 2 weeks. I am always tired, decreased energy level, have had many kidney stones for 4 years,4 were large enough to require lithotripsy, my concentration is poor, my short term memory is bad, have lots of joint pain, osteoarthritis in my hips, GERD, and hypertension. I have normal calcium but on the high end of normal. I am a 61 year old female. I also have gall bladder stones; do not know if this is related to Hyperparathyroidism. My PTH was also elevated.

SLIDESHOW

Hyperthyroidism Symptoms and Treatment See Slideshow
Comment from: Skibby, 35-44 Female (Patient) Published: August 24

I had parathyroid surgery 2 years ago. It took just over a year after I was diagnosed with elevated calcium levels till I had the surgery. I was achy all over, high blood pressure (though I still have very hard to control blood pressure), just did not feel right. I had a contrasting CT scan, which showed nothing. Finally I talked my Dr into sending me to a surgeon and he agreed that exploratory surgery needed to be done and he found a large mast on my upper right parathyroid. I feel better, but now my health seems to be declining. I am in the process of waiting for my 24 hr. urine results for an adrenal problem.

Comment from: cheyenne1993, 19-24 Female (Patient) Published: August 09

I have had primary hyperparathyroid disease for about 3 years now. I am 19 years old and it is taking a huge toll on my life. I have very high calcium, Ii suffer from migraines, bone aches, rapid heart beat, extreme chronic fatigue, irritability, anxiety, hair loss, and kidney stones. I have had all the tests and scans done to determine if i needed surgery. I will get surgery done in about a month. This disease is extremely hard to live with so i urge anybody who has symptoms to get checked out, it has been tough for me being so young going through this but i am happy to get it getting fixed!

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!

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.

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.

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.

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.

Comment from: Marvmarfa, 55-64 Female (Patient) Published: September 21

My hyperparathyroidism was diagnosed by my Endocrinologist after a blood test showed hypercalcemia in my blood. An ultrasound showed nodules. It caused my osteoporosis. I also have depression, memory loss, and at times it is difficult to swallow my own saliva. My TSH was high also. I will be seeing my endocrinologist in a few months to discuss treatment.

QUESTION

Where is the thyroid gland located? See Answer
Comment from: mel2012, 25-34 Female (Patient) Published: July 26

I recently found myself with a problem with my knee which lead me to find out I may have calcium pyrophosphate deposition disease. I looked it up and found that it is strongly related to hyperparathyroidism. My magnesium chronically runs low, I have an increased WBC count and low grade fever. I feel ill all the time with no reason. Most interestingly, I found out that my vitamin D was 10. However, my calcium levels are always fine. I have all the symptoms of hyperparathyroidism and haven't had blood work in a while. Also about two years ago I was found to have two small nodules on my parathyroid glands they said they would 'watch.' Is it possible to have primary hyperparathyroidism with normal calcium levels showing up on blood tests?

Comment from: Rich, 45-54 Male (Patient) Published: June 14

The symptoms I experienced from hyperparathyroidism were weakness, irritability, joint pain, depression, kidney stones, and generally feeling like things weren't right. I passed 13 kidney stones in two years since I had an elevated calcium of 10.9, but the doctor initially didn't want to send me for a PTH test. Eventually I pushed the issue and it was 125. With an elevated PTH and calcium level, you will have a benign adenoma, which is easily removed by newer methods (20 minute outpatient procedure). Skip the exploratory route. I am post-op two weeks and feel 10 years younger! All of my symptoms are either gone or minimal.

Comment from: HighCalc, 65-74 Female (Patient) Published: May 23

Fatigue, brain fog, aching legs, occasional confusion, dizziness. I am 68 and couldn't shake a bad cough and fatigue. My doctor ordered blood tests which showed high calcium levels. Further testing indicated levels of over 228. Normal should be 10-16, I understand. I have an appointment with a surgeon, but as I await tests, I am very, very tired, sleeping 8 hours at night and 3-4 hours during the day.

Comment from: Mervyco, 55-64 Female (Caregiver) Published: April 25

My wife had it and it was undiagnosed for 7 years, even though we saw some of the best medics. Eventually a massive tumor was excised at operation. She was achy, dull witted (sometimes even the simplest task was too difficult) aggressive, weak, slept up to 17 hours a day, depressed and tearful, snored loudly, zero libido and hates me touching her, even now. I am sure there were several other symptoms but these are the main ones. Sadly after only 7 months of wellness her Calcium levels are way up again and another op may be on the horizon.

Comment from: whiner, 45-54 Male (Patient) Published: April 20

Inability to focus; lack of concentration. Impaired memory. Not necessarily depressed, but get sad often for no apparent reason. Easily overwhelmed by seemingly simple tasks. Joint aches and pains, especially shoulders and knees.

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