Hyperparathyroidism Support Group
Hyperparathyroidism is overactivity of the parathyroid glands resulting in excess production of parathyroid hormone (PTH). Increased PTH consequently leads to increased serum calcium (hypercalcemia) due to 1) increased bone resorption, allowing flow of calcium from bone to blood, 2) reduces renal clearance of calcium, and 3) increases intestinal calcium absorption.
I need some advice/help. I'm 28 and I've been sick for 10 years now. The only consistent factor had been that my blood calcium had been in the mid 10's with normal PTH levels. I'd been nauseated, had abdominal pain, fatigue/trouble sleeping, and kidney stones.
Then in the summer of 2014, my symptoms got 10 times worse. I started getting nauseated every time I tried to eat, sleeping became more difficult, but I always felt like I had been hit by a truck. I've also lost half my hair volume. I went to a new doctor and they ran a new blood panel. My calcium was at a 10.4 around what it had been, but my Vitamin D had dropped to a 21.5. PTH was still normal. This doc referred me to a gastroenterologist because of my abdominal pain (they found nothing wrong).
I sought out an endocrinologist after reading about possible causes of high blood calcium. She had me take a lot of Vitamin D before coming back to test my blood and continue taking them while doing a 24 hour urine test. Well, my blood and urine calcium came back normal (9.9), but my PTH went up to 75. I also had an ultrasounds and sestamibi came back negative.
Where do I go from here? I've read about the Norman Parathyroid Clinic and I fit into the stats they normally treat, but the consultation fee for out of state patients is $1,750! Because I live in Maryland, I tried contacting Johns Hopkins who said they won't see me unless my calcium and PTH are both high but I 'peaked their interest' because taking a large dose of vitamin D cause my PTH to shoot up and my calcium slightly lower.
Advice? Experiences? Please help me... I'm so tired of being sick. I'm only 28 and I feel like I'm 80. I get sick so easily now that I've developed anxiety about leaving the house. Help.
Then in the summer of 2014, my symptoms got 10 times worse. I started getting nauseated every time I tried to eat, sleeping became more difficult, but I always felt like I had been hit by a truck. I've also lost half my hair volume. I went to a new doctor and they ran a new blood panel. My calcium was at a 10.4 around what it had been, but my Vitamin D had dropped to a 21.5. PTH was still normal. This doc referred me to a gastroenterologist because of my abdominal pain (they found nothing wrong).
I sought out an endocrinologist after reading about possible causes of high blood calcium. She had me take a lot of Vitamin D before coming back to test my blood and continue taking them while doing a 24 hour urine test. Well, my blood and urine calcium came back normal (9.9), but my PTH went up to 75. I also had an ultrasounds and sestamibi came back negative.
Where do I go from here? I've read about the Norman Parathyroid Clinic and I fit into the stats they normally treat, but the consultation fee for out of state patients is $1,750! Because I live in Maryland, I tried contacting Johns Hopkins who said they won't see me unless my calcium and PTH are both high but I 'peaked their interest' because taking a large dose of vitamin D cause my PTH to shoot up and my calcium slightly lower.
Advice? Experiences? Please help me... I'm so tired of being sick. I'm only 28 and I feel like I'm 80. I get sick so easily now that I've developed anxiety about leaving the house. Help.
A PTH of 75 isn't super high either but it is above the normal range. That indicates there's probably an issue.
Your next step should be to find an endocrinologist and/or surgeon that is an EXPERT in hyperparathyroidism. The Norman Clinic is good but they aren't the only game in town. You just need to search hard on the internet because many doctors just have no experience with this since it's fairly uncommon.
I found Dr Chen at University of Wisconsin Hospital who is very experienced. They did all the right tests, did the scans to locate the adenoma and performed a very successful surgery.
Be proactive in your health care, do the research and find someone VERY experienced because the parathyroid gland is very small and most general surgeon are inexperienced with it and will struggle.
Good luck!
I realize you posted this a while ago, but I live in the DC-area and was recently diagnosed with primary hyperparathyroidism even with normal PTH levels (38 and 48). I am in my late 30s, and have had high calcium readings (ranging from high-normal 9.8 to 11.1) on multiple occasions. but normal PTH. This delayed my diagnosis for nearly 5 years, and my symptoms went from mild (fatigue) to horrific in that time (hypertension, tachycardia, tremors, severe anxiety, brain fog, depression, insomnia but fatigue, irritability, hair loss, and heart palpitations).
I had bloodwork done by a cardiologist, psychatrist, and even the ER twice (when I was admitted for heart palpitations and tachycardia). Over and over again I was told it was "just anxiety" or "stress." But I knew better. After I got all my labwork since 2012, I contacted the Norman Center. Even with my normal PTH, they scheduled me for surgery this Monday.
Also, worth noting, the levels can change and go up and down even within a day. All of my PTH readings were considered "inappropriately normal" because if you have a calcium reading of 10.5, your PTH should be extremely low and suppressed, like in the single digits.
My PTH was 38 and 48 when I was diagnosed, with calcium levels consistently from 10.4-10.8 over multiple readings. This week I actually got my first high PTH results pre-operation at 94.
If you know something is wrong, trust your instincts and advocate for yourself.
I consulted with surgeons in NYC and at Johns Hopkins, but decided to pay the fee to go to the Norman Center. They are the only ones who I truly feel listened to me.