“I Feel Weird”…HyperParathyroidism

“I feel weird.” my 67-year-old wife, Marcy, kept saying. I asked her to describe “weird” and she would just say she didn’t know but she felt weird.  We had been visiting doctors for more than 3 years for this and she was being treated for restless leg syndrome, possible Lupus, acid reflux and host of other “guesses” the docs were making about her condition. She was taking calcium supplements due to bone loss in her hips, osteoporosis. Anti-anxiety meds, meds for her gastric reflux and more. She had three stints put in her heart due to blood flow blockage. Meanwhile, her overall general health was going downhill. She started sleeping in another room to avoid keeping me awake since she was crying nearly every night and morning from the discomfort. She no longer visited her weekly “coffee and cackles” group of girlfriends as she had for several years. She was starting to give away things of hers because she thought she was dying. And maybe she was.

At a doctor’s visit, I heard him remark “I’m not sure what is wrong but her calcium is a little high.”  I pulled out my notepad and asked him “How high?”  He said “10.6.” So I wrote that down and began researching.

I learned that having a calcium level over 10 is considered “hypercalcemia.” “Hyper,” means high and “hypo” means low.  On this website, I found a list of symptoms that seemed to match hers.  It said that if you had just some of these symptoms you most likely had the disease called hyperparathyroidism. It affects approximately one out of 80 people in their lifetime and the most likely candidates for it are post-menopausal women where the rate is about 1 out of 50.  The most common symptoms are “feeling weird” and being “bitchy.”  Well, Marcy wasn’t bitchy but seemed to have several of the other symptoms.

So we went back to the doc and I asked for a test of her parathyroid hormone level or PTH. It came in at 93. A little more about that:

The parathyroid glands are four glands usually in the neck near the thyroid gland. They were the last glands discovered in mammals and they regulate the calcium level in your blood. They are normally about the size of a grain of rice. Once in a while one or more goes berserk and grows much larger, forming a non-cancerous “adenoma” that pumps out too much PTH and raises your calcium level. It gets some of that calcium from your bones causing osteoporosis. Normally, the PTH level goes from maybe 10 or so to up to 65, depending on how much calcium you require at the time. The more calcium you require, the higher the PTH level. When all is working right and the calcium gets up there, the PTH level diminishes. A red flag is when the PTH is, say 67, and the calcium is 10 or so.

The doc said he thought possible hyperparathyroidism was a “red herring.”  I  asked him for a referral to an endocrinologist or gland specialist. When we got with that specialist he looked up the results of the PTH test he had ordered himself when we made the appointment and said it was 62 “and that was normal.”  I said “No it isn’t!  Not with a calcium level of what you see there…10.6!”  I said I think she has hyperparathyroidism. Especially with all her other symptoms. He seemed a bit flustered and said he was going to order some more tests which would take a week or so to get to and then a few more weeks for him to get back to us.  As we left I mentally fired him.

I had learned that there is a very simple 15-minute operation that takes out the berserk, but benign, adenoma through a very small incision in the neck and completely cures the disease.  So I began found a doc with good references who did that nearer to my residence in California than James Norman who does the website and practices in Florida.  His name was Emery Chen less than an hour’s drive away. (Update: Dr. Chen is now practicing in Palmdale, CA. Updated 1/9/24)

We visited his office and after only a few minutes of describing her symptoms and blood tests, he said “I think she has hyperparathyroidism. Come on in back and I’ll do an ultrasound to see.”  In about five minutes he asked me to come over and look at it. He pointed out an all-black area on the screen where there were no ultrasound echoes. He said, “See her carotid artery pulsing here and her trachea there? See the black area here? Parathyroid adenomas are very soft so don’t reflect ultrasound pulses. That’s how I know what it is.”

I’m telling you this part in detail because some docs say you can’t see parathyroid adenomas on ultrasound and say you must do what they call a Sestamibi scan or a more recently developed CT.  Both use dye contrast to identify the parathyroid glands.

We discussed with Dr Chen whether we thought we needed a Sestamibi scan. We decided we already knew enough to go ahead and schedule the surgery.

Both of us cried as the elevator came to take us down to our car. I tear up as I’m writing this and have almost every time at this point when I’ve told this story. After several years of misery, someone knew what was causing it and was going to fix it.

A week later Dr Chen walked into the waiting room where I was awaiting the results of the 15-minute surgery. He showed me a picture of the adenoma he had just taken from Marcy’s neck. It was about the size of the end of a thumb instead of the size of a grain of rice like a normal parathyroid gland.  He said “She’s cured. We tested her blood shortly after we took it out and the PTH is now at a normal level.”

Here is that photo

And cured she is!  She is back to her normal self. Back to Coffee and Cackles with her girlfriends. Back to sleeping in our room together. You can’t even see the scar from the tiny incision in her neck now. No more acid reflux, anxiety pills, feeling weird or any of the other symptoms. She will have those heart stints in forever but her heart function is great now. I’m positive that the blockage was caused by the excess calcium. Statistically, her life expectancy is now at least 5-6 years longer than it would have been with this disease.

So I urge you to listen carefully to anyone who says “I just feel weird.”  “I get kidney stones.” “I just have no energy.” “I have acid reflux.” or describes more than one of the other symptoms on this web page. Ask them if they know their calcium level. If it’s 10 or above, you may just be able to help them live a longer, happier life by referring them to a doc who knows about hyperparathyroidism and will order a PTH blood test.  Remember, one in 80 people are said to have this in there lifetime and it is one of the most under-diagnosed diseases. You probably know someone who has it.  You, they and their doc just don’t know it yet.