My Account of Hyperparathyroidism and Parathyroid Surgery Part 1

Turning forty is hard enough. Add two deaths in the family, a family feud, raising two kids under six and a parathyroid surgery, and turning forty becomes a test. Welcome to middle age!

According to the Columbia University Medical Center Department of Surgery, each year, 100,000 new cases of primary hyperparathyroidism are diagnosed in the United States, affecting 0.2% to 0.5% of the population. Women are more commonly affected than men and the incidence of the disease increases with age.

My health issues with primary hyperparathyroidism began in April 2008 with a routine blood test. (My story is a case for getting that annual physical and blood work done.) My routine blood test results indicated that my blood calcium level was 10.4 (10.2 is the high). This prompted my primary care physician to order another blood test. The second blood test indicated my blood calcium level was now at 11 and my Parathyroid Hormone (PTH) levels were through the roof at 110 (10-65PG/ML is the normal range).

Meet Your Parathyroid Glands

Not to be confused with the thyroid, the parathyroid glands are small endocrine glands that produce parathyroid hormone. Parathyroid hormone regulates serum calcium levels within the blood and bones. We have four parathyroid glands, found behind the thyroid gland. In rare cases, parathyroid glands may be located within the thyroid or the chest.

Hyperparathyroidism

That second blood test, resulting in high parathyroid hormone (PTH) levels, indicated that I almost certainly had what is called hyperparathyroidism. Hyperparathyroidism occurs when the parathyroid glands secrete too much PTH and the fine balance of calcium and phosphorus in the blood is impaired. My blood calcium was rising and my blood phosphorus was falling. This is the most common type of hyperparathyroidism, also known as Primary Hyperparathyroidism.

Severe elevations in calcium can result in thirst, excessive urination, kidney stones, thinned bones or inflammation of the pancreas.

Causes of Hyperparathyroidism

The most common cause of hyperparathyroidism (85% of cases) occurs when one of the four parathyroid glands becomes enlarged and becomes a benign tumor called a parathyroid adenoma. Test results would later reveal it was my lower left parathyroid that had become a benign tumor that was overactive and essentially going haywire - producing too much parathyroid hormone and too much calcium in my blood. In some cases (15%) multiple glands become enlarged simultaneously; called parathyroid hyperplasia. In very rare cases (1%) hyperparathyroidism is caused by a parathyroid cancer. Imagine my reaction after reading that, knowing that thyroid cancer runs in my family.

Treating Hyperparathyroidism

Surgery to remove the enlarged gland is the only treatment for this disorder. Surgery results in a complete cure in 95-98% of patients with hyperparathyroidism. I would soon find out that surgery is recommended to all patients who have symptoms and to all patients with more than mild elevations in blood calcium.


Symptoms of Hyperparathyroidism

  • Weakness
  • Fatigue
  • Depression
  • Mood Swings/Irritability
  • Difficulty with Concentration
  • Bone and Joint Aches
  • Loss of Appetite
  • Constipation
  • Insomnia

I actually experienced about four of those above symptoms, a loss of appetite was unfortunately not one of them! My husband will be the first in line to testify that the mood swings, depression and irritability are indeed real-life symptoms. I also can attest to being fatigued during the day and I experienced some insomnia, waking up in the middle of the night, every night for at least two hours.

But I must note, like many other women my age, I did have other stuff going on. I just stopped taking an anti-depressant the very same month (no, not cold turkey.) I was approaching forty (June) and I thought the mood swings might be due to hormonal changes that occur during perimenopause. I was very confused as to what was mentally and hormonally going on with me that year. Now, looking back two years later after my surgery, I have no doubt that it was hyperparathyroidism that was causing all of my symptoms.

Taking Health Care into My Own Hands

After my second blood test, I waited for the results. The results never came. What did come was a letter from my primary care doctor informing me that I had an appointment with a local endocrinologist in August. I didn’t receive a phone call, and there was no explanation in the letter as to why I needed to see an Endocrinologist. (Remember, at this point, I don’t even know what the second test results are.)

Having learned on my own about Primary Hyperparthyroidism, I knew I couldn’t sit around for three months waiting to see a local endocrinologist. I mentioned that thyroid cancer runs in my family. I understood my medical condition involved the parathyroid and not the thyroid and that my chances of having a cancerous tumor were about 1% which was comforting. Still, my father had portions of his cancerous thyroid removed in two surgeries by the same surgeon who operated out of Beth Israel Deaconess Medical Center in Boston. (I am happy to say that each surgery was successful. My father is on medication for life, but is doing quite well.) If I was going to have to have surgery, I believed I would be in the best of hands with his surgeon whose specialty was thyroid and parathyroid surgery. It only made sense that I seek out an endocrinologist and turn over my case to Beth Israel Deaconess Medical Center, a Harvard-affiliated teaching hospital located in Boston, MA.

Each year, about a quarter million patients and their families count on Beth Israel Deaconess Medical Center. BIDMC has a state-of-the-art trauma center, and developed sophisticated minimally invasive techniques, and called on innovative training and technology to ensure the highest level of patient safety and quality of care.

This concludes part I of a this three-part series. In part 2, I will discuss meeting with my BIDMC endocrinologist, the tests that I was required to undergo, meeting my surgeon and my experiences up to my surgery. Part III will consist of details of the actual surgery. (Sorry no video.)

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9 comments

frogyfish profile image

frogyfish 6 years ago from Central United States of America

Interesting article and pertinent to my situation, as a relative has a possible DX of this condition. Will read your following articles, and share them! And thanks for becoming my fan too!


Robin Corbo 6 years ago

On January 22, 2010 I was let go from my job as a legal secretary. It was a job I had done for over 21 years. I lost my job because for more than 2 years I had all the symptoms of hyperparathyroidism and didn't know it. Symptoms were gradual. I would forget simple phone messages even as I wrote them down. I would send important documents to clients only to find out I sent the client an empty fed ex envelope. I'd gotten to the point where I would become so nervous and anxious I couldn't even do the simplest computer operations. I would forget and actually sit at my desk and cry. It was a horrible experience. It had gotten to the point where each time something happened and one of my attorneys would report it, I would be summoned to the supervisor's office and could not explain what happened for the life of me. I honestly didn't remember not doing something that was considered standard operating procedure.

I am a young 56 years old. I am very healthy woman. I have regular medical checkups, yearly mammograms and GYN checkups. On February 11, 2010 I was at my doctor's office for a routine checkup when he mentioned I might have hyperparathyroidism. I'd never heard of it before then. When I got home and researched the condition I cried for two hours.

I had 2 parathyroid glands removed from the right side of my neck on May 11, 2010. My doctor said I had a huge adenoma on one of them. Today is May 24. I am starting to feel better and stronger than I've felt in a long, long time. I'd like my former supervisors to know what happened to me. Do you think that I should? I am going out today to look for another job.

The last nine years of that time I worked at a firm in New York City that I really enjoyed For the past 9 years I worked for 4 attorneys and a paralegal. As a legal secretary I was diagnosed with hyperparathyroid on February 11, 2010. I underwent hyperparathyroid surgery on May 11, 2010. The month between diagnosis and surgery I read and researched everything I could find about the condition. Most of the time crying like a baby because I finally knew why, for the past 2 years, I felt like I was losing my mind, my health, and finally my job.


Kristi Maloney profile image

Kristi Maloney 6 years ago Author

Robin,

Thank you for sharing your story! Absolutely! I would certainly let them know. Your work performance was a direct result of the hyperparathyroidism. It really creates havoc within the body! It is nice to get your perspective added here, because your symptoms sound very extreme and very real. Your comment will help others. Please do let your former company know about it and keep me posted. I would like to know the outcome.

I am glad you are feeling much better. Isn't it a relief to have your life back?

Good luck and good health to you!

Kristi


bob fera 6 years ago

First and foremost, I am happy to hear your health is returning to normal. I would certainly encourage you, if/when you are ready and believe it would be good for you, to craft a way of letting the most likely person to understand this issue the medical facts of this disorder. Until/unless we all inform folks of conditions, whatever they may be, others will be in the dark and make ignorant decisions.

I am awaiting surgery in a little over a week to remove a bad parathyroid and my entire thyroid as well (a small nodule was recently diagnosed as papillary carcinoma). Fortunately, my workplace has been very supportive and I hope for the same for you in the future.


Cathy 5 years ago

Did your doctor have you take calcium tablets for a while after your surgery? I have hyperparathyroidism and am scared to death. I have had it for 20-30 years. I haven't felt well in so long.


Cathy again! 5 years ago

Also, did you feel pretty bad before surgery or possibly after surgery you felt so much better that you realized how bad you must have felt before surgery?


Kristi Maloney profile image

Kristi Maloney 5 years ago Author

Cathy,

Thank you for your comments. I am sorry it has taken me a while to get back to you. I did not have to take calcium supplements at any time. I felt pretty bad before surgery. I was agitated and wasn't getting a full night's sleep. It was very noticeable how much better I felt after surgery. Good luck with your surgery Cathy and I know you will feel much better once it's done. (for all sorts of reasons!)


DePuy Pinnacle Lawsuit 5 years ago

High blood Calcium levels may indeed be an indication of a hyper active parathyroid gland. Having high levels of Calcium in the blood may increase your risk of pathologic fractures. This is the reason why I had a Pinnacle hip implant a few years ago. Now I'm considering filing a lawsuit against the defective device.


Suzan Page 4 years ago

I too lost my job due to this disease. Even the medical community do not understand this awful disease. I was a very successful research and specialty nurse for 20 years. After I received my diagnosis, I tried to educate health care professionals at my hospital in Denver. After my surgery and cure, I continued to try to hang on to my job by trying to explain the treatment and cure. Because I had severe osteoporosis, but given a green light by my physician to return to work without restriction, I was pressured to resign because the hospital just did not want the liability of the possibility of breaking a bone. After my forced resignation, I was denied health insurance. I am just now after 6 months since surgery putting my life back together again. However, I will never return to nursing because a profession that is supposed to be informed and compassionate was anything but that with me and my disease. This is such a social and medical injustice. Writing a letter for me not only did not work before job loss. There is a much worse pathology than my disease. I am leaving the past in the past. The best revenge is succeeding and living well in spite of limitations. I will be running my second marathon, this time after my cure. Oh, by the way, the institution responsible for my professional maltreatment was Swedish Medical Center.

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