Hyperparathyroidism: My Journey to Healing and Health Empowerment

KATHY’S STORY…..

We are honoring Kathy’s request to publish only her first name, without a bio, as a guest blogger. 

Diagnosis

I was a healthy and vibrant 30-something woman who had a routine annual exam and blood work. I received a follow-up voice message from my doctor’s office saying that I had high calcium, and that I needed to schedule another appointment to retest to verify that my calcium was indeed high. I panicked wondering what high calcium could mean and consulted “Dr. Google”, which only added to my anxiety.

The first search results told me that I must have cancer! I was scared. Further research however led me to www.parathyroid.com, the website for the Norman Parathyroid Center. I had stumbled upon a very informative and comprehensive website explaining hyperparathyroidism and my treatment options. I was relieved to read “you don’t have cancer .. you have a disease that can be cured with a simple outpatient surgery.” What I had was a benign adenoma on one of my 4 parathyroid glands and as I read further, I learned that surgical removal was the only cure. When I showed my husband the website, he was apprehensive at first that I had found the answer to my medical crisis online and wondered whether it really was in my best interest to travel out-of-state for surgery.

As Fate Would Have It

I then talked to my mom and she mentioned that her boss had suffered from this disease a few years ago and coincidentally she had actually been to Tampa to have surgery with Dr. Norman, the surgeon I had been reading about! My mom offered to put me in touch with her boss.The woman assured me that I would be in good hands. I felt that this was a sign from the universe/God that I also needed to get surgery at The Norman Parathyroid Center. Though my search started online, I had now talked to an actual patient of Dr. Norman’s who had been cured and this gave me the confidence I needed to proceed with a self-referral.

Reasons I self-referred to Norman Parathyroid Center

I was referred to an endocrinologist after my calcium and PTH were retested and both were high again. After waiting a few months to see the endocrinologist, he recommended retesting and additional tests (blood tests, 24 hour urine test, and bone DEXA scans). My endocrinologist seemed surprised when the bone DEXA scans showed that I had osteopenia at such a young age and said surgery “may” be an option.

At first, it was recommended that I merely drink more water and take large doses of Vitamin D. Dr. Norman’s website stated that high doses of Vitamin D would not help and may even be harmful so I didn’t follow the doctor’s orders. I had a real tumor growing in my neck and yet my endocrinologist wanted me to simply wait until my symptoms worsened.

I self-referred because despite my doctor’s quick diagnosis, he did not seem familiar with the most advanced surgical techniques for this disease nor did he seem to approve of my choice to travel to Tampa for surgery. I am very lucky that we now have the medical advances where this tumor was caught in its early stages and I could get MIRP surgery. Many other patients with this condition are misdiagnosed for years. Their doctors ignore their high calcium and their condition just worsens.

Proudly showing the incision site the day after surgery.

Norman Parathyroid Center is leading the way in performing MIRP surgeries. This surgery is complex as the tumor that needs removal is in the neck – a very delicate area to operate. The other healthy parathyroid glands are only the size of a rice grain so I didn’t want an inexperienced surgeon harming the healthy ones. I chose Dr. Norman because he is one of the best surgeons in the world, in my opinion, for this type of procedure. The center exclusively performs parathyroidectomies – 64 per week, 3,100 per year (http://parathyroid.com/about-parathyroid.htm).

Sightseeing the day after surgery at the Tampa aquarium.

 MIRP Advantages from a Patient Perspective

My surgeon invented the Minimally Invasive Radio guided Parathryoid Surgery technique (MIRP) in the early 1990’s, and I can attest that, in my case, this was a very easy surgery. It was outpatient surgery performed in less than 20 minutes under light anesthesia; I had minimal discomfort, and a quick recovery. The next day I enjoyed lunch and a visit to the aquarium with family. After two years, the tiny scar on my neck is barely noticeable but a proud reminder of my experience combating this disease. I also felt lucky that there were medical advances so that I could have an outpatient surgery and not have to endure the traditional surgery invented in 1925 where the whole neck is cut open. The traditional surgery requires a longer hospital stay, costs more, leaves a longer scar, and requires longer recovery time. Another benefit of MIRP surgery is that all four parathyroid glands are checked.(http://parathyroid.com/MIRP-Surgery.htm).

 “Asymptomatic”

It is important to note that I was “asymptomatic”, in the sense that, I had no idea I had this disease until I had routine blood work done. I was not feeling ill or depressed, had never been really sick in my life, never had surgery or even been hospitalized. I am fortunate in that my primary care physician was a very smart doctor to tell me right away that high calcium was not normal.

However in retrospect, I was actually experiencing signs of primary hyperparathyroid disease, I just didn’t make the connection. While I looked healthy on the outside, on the inside, it was a different story. I had mood swings, frequent urination, anxiety, some aches and pains. These were classic symptoms of the “moans, stones, groans, and bones” as they are traditionally categorized. Fortunately, I had not yet developed kidney stones, but my bones were getting weaker as they were robbed of needed calcium. I had developed osteopenia.

Had I not been diagnosed and received surgical treatment early on, I could have been like the countless women who are misdiagnosed for many years and end up with a wide range of physical and mental illnesses advancing to next stages,  like my osteopenia progressing to osteoporosis, increased anxiety and depression, and fibromyalgia.

Because I was considered “asymptomatic” and I was younger than most patients with this disease (it’s more common in women age 50 and up), I feel that the doctors were even more reluctant to recommend surgery.

Seek Answers if Your Blood Calcium is High! The “Wait and See” Model is Outdated.

I chose to get surgery sooner rather than later because I wasn’t going to allow this disease to ravish my body – to destroy it as the years went by, as doctors just monitored my worsening condition. The “wait and see” approach doesn’t work! I wasn’t going to sit there and wait to suffer from kidney stones, increased osteopenia, and increased risk of various cancers.

For every great doctor familiar with hyperparathyroidism, there are countless others who are unaware about the dangers of high calcium. Many doctors may have only read a paragraph or two on hyperparathyroidism in medical school and they may only encounter a handful of patients during their practice with this condition.

If your doctor ignores the cause of your high calcium, won’t listen to you, ignores your symptoms, tells you to wait and see, or tells you it is just menopause, I urge you to get a second opinion or even change doctors. I suggest following your gut and finding a doctor willing to listen and work with you as an equal participant in your journey to recovery and healing. With medical advances such as MIRP surgery, there is no need to suffer with this condition.

In closing, I urge you to empower yourself by researching your treatment options and finding the right surgeon for you who is specifically trained in this type of surgery/disease.

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