Maureen’s Story -Diagnosis Twelve Years Too Late

Maureen is sharing her story with the hope of helping others avoid the needless suffering that she endured as a result of primary hyperparathyroid disease going undiagnosed for so many years.

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I was diagnosed with osteoporosis in 1999 after I broke my right foot stepping on a shoe in my closet.  I was put on Actonel and my bone density remained fairly constant during the next 12 years and my calcium levels were between 9.9 and 10.3 (as I learned later, a big red flag).

In August 2011 I broke a bone in my left foot (same bone as on right foot in 1999).  In November 2011 I was getting pre operation lab tests for a total knee replacement scheduled for that December.  The test showed high blood pressure, mitral valve calcification and high calcium of 10.5 and low vitamin D.  I was overcome with anxiety and even had brief bouts of depression which I never had before.  I cancelled the knee operation because of the anxiety.  On Thanksgiving Day of that year, I slipped on ice and broke my left wrist and had surgery to put in a plate and nine screws.  In December I had my first ever parathyroid hormone (PTH) blood test and it was a very high 118 (normal 20 to 65).  This led my endocrinologist to order a 24 hour urine test which came back a high 483 (normal 100 to 300) which indicated a lot of calcium in my urine which led to a diagnosis of primary hyperparathyroidism, unfortunately for me, twelve years too late.

Having never heard of hyperparathyroidism, I googled that word and the first hit I got within seconds was for the Norman Parathyroid Center in Tampa, Florida.  After much research of many other hospitals and doctors over the next few weeks as well as interviews with friends and relatives who had the disease, it became apparent to me that the Norman Parathyroid Center was the center of excellence in the world for this disease.  I sent my medical records to them and had a phone consultation with Dr. Lopez a few days later. I went to Tampa and on February 9, 2012 and Dr. Douglas Politz removed two bad parathyroid glands in a 20 minute operation with a one inch incision.  Two hours later, I was told to “go home, you are cured”.  Today, you cannot see any scar.

My anxiety, acid reflux, depression and sleeplessness went away within days and my high blood pressure resolved over the next several months.  I stopped taking Actonel and my bone density slowly increased.  I have not broken any more bones.

I feel that, if the root cause of my osteoporosis was sought in 1999 and found to be malfunctioning parathyroid glands, I would have been spared a dozen years of medical issues and diminished quality of life caused by hyperparathyroidism.  Since this had happened to me, I imagined that it probably was happening to many others, so, I decided to start telling others about my experience.

Within a few weeks I found two of my friends in a similar situation.  One was being “monitored” for possible hyperparathyroidism.  After I told her my story she contacted the Norman Parathyroid Center, sent them her lab work and, based on their diagnosis of the disease, she went to Tampa where they took out a bad gland and she was cured.

Another friend told me that she had surgery locally for parathyroid gland removal two years prior but that her calcium levels were still high.  I told her to get to Tampa as soon as possible because they must have left a bad one (s) in.  She went to Tampa and Dr. Norman took out two bad parathyroid glands and determined that the one the local doctor had taken out was a good one.  She is now cured and functions well with the one remaining healthy parathyroid gland.

An acquaintance of mine responded to an e-mail I sent out shortly after my surgery with information about the disease.  She told me that she had parathyroid surgery in 2002 and that it was a major event that took hours with an incision that went “ear to ear”.  In fact she said “they jokingly referred to me in the recovery room as a PEZ dispenser” because of the shape and size of the incision.

Based on my experience, I would advise everyone to find out what their calcium levels are (most physical exams have this as a standard test) and if the number is about 10 or higher or fluctuating up and down around 10,  to get another blood test for PTH.  If that result is other than low (0-20) you likely have hyperparathyroidism.

In my opinion the two main problems in the medical profession with regard to diagnosing this disease is that the “normal” calcium levels are too high and that when a PTH test is ordered and comes back “normal” (20 to 65), many doctors miss the diagnosis.  The reason a “normal” reading is an indicator that someone has the disease is that if your blood calcium levels are high (over 10) your parathyroid glands should not be putting out “normal” amounts of PTH asking for more calcium to be taken out of your bones.  I also feel that, since almost all people with hyperparathyroidism have osteopenia or osteoporosis, those folks should get both calcium and PTH blood tests.

Problems exist also with surgery. Those surgeons not well versed with the operation may not be able to find the bad gland(s), or worse take out a good one.  Also the degree of skill needed to perform the operation well is very high.  Be sure to find out how many of these surgeries your potential doctor has done and what the results were.  Norman Parathyroid Center does about 68 a week*.

The bottom line is that, with a well informed and experienced medical team, this disease is very easily diagnosed and cured.

* Cite source: page 1.

Editor’s Notes: It is estimated that 1 in 50 women over the age of 50 suffer from primary hyperparathyroid disease. Primary hyperparathyroidism results when one or more adenomas (non-cancerous tumors) form in one or more of the parathyroid glands and secrete too much parathyroid hormone (PTH), which disrupts calcium regulation, leading to hypercalcemia, or high calcium in the blood.  Men also get the disease so it is important for ALL of us, as we age, to check our blood serum calcium values.  High blood calcium is bad! Blood calcium is included in the comprehensive blood work panel routinely ordered for an annual physical check-up.

So what’s the problem, if blood calcium is routinely checked? Well…. what is considered a “normal” range depends on a person’s age. For example, teenagers and people in their early 20’s can have calcium levels up to 10.7 mg/dl. However, once you are over 30, you should have all calcium levels in the 9’s with the upper limit of normal being 10.0 or 10.1 mg/dl. A mature adult with calcium levels in the 10’s is very likely to have a parathyroid tumor. Because many labs report the normal range as an average of all the age groups, or report the top value of the range too high, as Maureen alludes to in her story, patients often go undiagnosed for years unless the doctor is particularly astute.

Help us raise awareness among the general public and medical professionals to improve the timeliness of diagnosis! If you or someone you know has symptoms share this information with them so they can rule out primary hyperparathyroid disease as a possible root cause.

Calculate the upper limit of blood calcium for your age using this hypercalcemia calculator  (yellow icon mid page).

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