Moving through a new diagnosis

When the parathyroid gets out of balance

Receiving a medical diagnosis can often come as a relief. All those niggling signs and symptoms are finally explained by a few words and, if we’re fortunate, a treatment plan for how to recover. 

But in that space between diagnosis and treatment, it is often downright scary, disorienting, and disempowering. 

I can attest to this, because that’s precisely where I’ve found myself this past month, as I too am now managing a new diagnosis, one where the treatment plan most likely involves surgery. 

Due to the doctor’s schedule as well as the battery of tests required to confirm the diagnosis, it won’t likely occur until the middle of January, which leaves plenty of time for me to cycle through the five stages of grief: denial, anger, bargaining, depression, and acceptance. There’s also time for fear and hope, as well as for the realization that, yikes, I’m not handling this as well as I’d like; figuring out how to not let the anxiety crush me has taken on a new urgency. 

The diagnosis itself, hyperparathyroidism, is associated with joint pain and kidney stones as well as more general symptoms, such as depression, constipation, and fatigue, that sound eerily similar to ones that come with flares of Hashimotos Thyroiditis, the autoimmune condition I’ve been managing for more than eight years. 

Despite sitting on top of the thyroid, the parathyroid performs a function that is distinct from the better-known “butterfly” gland. It’s responsible for controlling the level of blood calcium in the body and when it detects that calcium levels are low— through a tightly regulated “feedback loop” —it directs the body to release more calcium into the blood, often stealing it from the bones in order to maintain homeostasis. Adenomas—benign tumors—can develop, (we don’t know if it’s due to environmental or genetic factors, or both) and the extra unhealthy tissue causes the parathyroid hormone (PTH) production to rise, tipping the individual into a hyper-parathyroid state. Unfortunately, this leaves the bones and body depleted and, left unchecked, puts the patient at high risk for osteoporosis and kidney stones. 

Like most disease states, I’m certain that this didn’t happen overnight. In reviewing my labs over the past eight years, I can see the pattern of high serum calcium markers, but because they were still in the normal range (at 10 mg/dL), there was never any discussion of testing my PTH levels. It wasn’t until my levels climbed to 10.8, detected on routine lab work, that “advanced” PTH testing was indicated and high levels of this hormone were confirmed. Serum calcium levels are deceptive; we want our calcium to be stored in the bones, not an excess in the blood where it can become calcified. The concern is that my now higher-than-normal blood calcium levels mean that my bone calcium levels are lower than desired. I’ll know more after undergoing my first DEXA scan, one of the tests I’ll take to determine the mineral content of my bones, something serum labs cannot measure.

As a Functional Nutrition Counselor, my first move would be to treat the issue with food and lifestyle strategies, eating more bone broth, sardines and other bony fish, and leafy greens—while cutting out any caffeine. You can be sure that over these next months I’ll be returning to Annemarie Colbin’s The Whole-Food Guide to Strong Bones, which has a terrific overview and delicious recipes.

However, from what I understand, trying to correct at this stage with food and lifestyle -- what we call in functional nutrition “tier one and tier two” -- is not going to get to the root problem, as there is likely an adenoma, which is potentially wreaking havoc and can lead to more debilitating issues if it is not surgically removed, a “tier three” issue for which I need medical intervention.

The battery of tests scheduled for December will help pinpoint more closely where the damage is, so that the surgery can be as “minimally invasive” as possible. The parathyroid consists of four “buttons,” and though we want all four to be functional, it is possible to function with just one of them—this isn’t ideal, but it’s manageable. Best case scenario is that only one is diseased, but that won’t be clear until the surgeon gets an up-close view in the operating room. The hope is that as soon as it is removed, my PTH levels will drop, along with my blood calcium levels, at which point, the situation will stabilize. Unlike autoimmune thyroid disease, it is thought that parathyroid disease can be cured!

As “routine” as this procedure is, surgery is scary. The parathyroid is in a sensitive place, nestled in the neighborhood with the thyroid, pharynx, and trachea. It doesn’t help that I’ve recently finished reading The Slaughterman’s Daughter, which provides a disturbing amount of detail about ritual throat cleaving. While I know that that’s not exactly the deal here, it’s disturbing to learn that 1-2 percent of these procedures result in “permanent hoarseness.” Catastrophizing, it seems, isn’t just limited to the Covid pandemic. 

I’m working to recognize these debilitating thoughts and breathe them out. If I happen to start thinking about this at an inopportune time, such as in the middle of the night, I envision a bright red sign with the letters S T O P.

Meanwhile, the best way I know to dampen the fear is to ask questions and get accurate information. It felt better to consult with the surgeon, who didn’t make me feel bad for crying in her office or for asking her a dozen questions along with one about her track record. As my primary doctor had indicated, she is highly experienced; thyroid and parathyroid surgery is what she does. While she didn’t try to sugarcoat any of this, she did tell me that most of her patients feel better after the procedure and go on to live full lives.

So I’m proceeding with the testing, while focusing on what is within my control to feel better. As always, it comes down to mitigating stress and getting sound sleep. On days when I wake up feeling rested, everything is so much easier. The Gokhale Exercise Program, which includes a powerful trifecta of dance, strength training, and moving meditations is helping me maintain my bone health and keep my spirits intact. Walking in the woods and connecting with friends and family also helps. I am beyond grateful to my husband and my kids for giving me extra support during this time. All of these little things add up to a lot of stress reduction, and, I pray, a body that will heal.