The case of Charles Martell – How far have we come?

Captain Charles Martell was the first recorded patient in North America to be diagnosed with what was considered the rare condition of hyperparathyroidism. The year was 1926.

In 1918, at 22 years of age and over six feet tall,  Charles Martell joined the Merchant Marines. In 1926, several years later, standing before Dr. Eugene DuBois, at Bellevue Hospital, New York City, he measured seven inches shorter. His legs appeared deformed and Charles reported a history of multiple fractures and disseminating pain.  Dr. DuBois referred Charles to Ward 4, Massachusetts General Hospital, Boston, a center founded by James Howard Means to research obscure medical conditions, where an honorary plaque celebrating the ethos of the new ward declared:

Patients are the primary knowledge keepers of their conditions and that they should be seen as indispensable, equal collaborators in pursuing the cause of medical research  ” for their own benefit and that of others”.

Learn more about Charles Martell in this interesting,  peer reviewed article written by Stephen Casper PhD BSc Department of Humanities and Social Sciences, Clarkson University, Potsdam, NY, through the link below. 

The Case of  Charles Martell and Ward 4 – 

So just how far have we come? Sadly, much of the language used to describe Charles’ early experiences sounds eerily similar to what patients’ experience today…. 

“He was investigated for years”.

“He underwent exploratory surgeries”.

” … it was a rare medical condition”. 

“The onset of illness was 1919. By 1923 (4 years) it had progressed to such a degree that he was forced to abandon his career”

“Nonetheless it was not until 1926 ( 7 years) that he would meet a physician who named his suffering.”

While much has been learned about hyperparathyroid disease over the last nine decades there is still much work to be done!

There are still strikingly different levels of understanding among medical professionals about this disease that isn’t so “rare”. As many physicians still seem to believe that it is, they often do not consider primary hyperparathyroidism as the root cause of patients’ symptoms (ie. brain fog, osteoporosis or kidney stones, to name a few).  Experts, on the other hand,  estimate that 1 in 50 women over the age of 50 have primary hyperparathyroid disease. (i.e., 2 % of this large population.)

Exploratory surgeries are still commonly performed, even though we know that there are better ways to go about surgically caring for patients.

Patients still lose their jobs or abandon their careers.

It is estimated that patients go undiagnosed on average, 8 years – no better track record than poor Charles.

Why?

1) Most people have never heard of their parathyroid glands nor are they aware of their critical function of regulating calcium in our bodies.

2) Although patients are treated for many of the debilitating symptoms of hyperparathyroidism for years, the root cause goes undiagnosed.

3) Patients, and too often medical professionals, are not familiar with ALL of the debilitating symptoms of the disease which can delay diagnosis.

4) Within the medical community, there is a lack of understanding as to the various biochemical presentations of hyperparathyroidism. Medical professional also may confuse whether hyperparathyroidism is Primary – resulting from one or more noncancerous adenomas, Secondary to another medical condition or Familial (FHH) /hyperplasia. Note: The majority of patients whose calcium is high have Primary hyperparathyroidism, which can be surgically cured.

5) There is no consistent standard for what the normal, age-dependent range of serum calcium should be. Experts concur that adults age 30+ generally have calcium values in the mid 9’s and hyperparathyroid disease should be suspected if values are 10.1 or above.

Read more about our Action Plan. 

Become educated! Ask smart questions and help create change!

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Para WHATS???

screen-shot-2016-09-07-at-8-17-10-pmWhat is primary hyperparathyroidism (pHPT)?

Hyperparathyroidism is the illness that results from too much parathyroid hormone. There are four parathyroid glands that are each the size of a grain of rice and are usually located behind the thyroid gland. These four glands regulate calcium in the body. 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. Hypercalcemia has several bad consequences. As a result of calcium being leached from the bones due to high PTH, primary hyperparathyroid disease can be a root cause of osteoporosis.

How is primary hyperparathyroid disease diagnosed? 

Primary hyperparathyroidism is diagnosed through blood tests. These tests include serum calcium, PTH (parathyroid hormone), and vitamin D-25. Most patients present with:

High serum calcium (normal = 8.7 – 10.1 mg/dl)
High PTH (normal = 15 – 65 pg/ml)
Low vitamin D-25 (normal = 30 – 100 ng/ml).
*Note that normal lab ranges may vary from lab to lab.

According to the experts, persistent calcium levels 10.1 and above (in an adult) is almost always a parathyroid tumor. Approximately 20-25 percent of cases don’t present classically. Normohormonal primary hyperparathyroidism occurs when calcium is high, but PTH is still within the normal range. Normocalcemic primary hyperparathyroidism occurs when calcium is in the normal range, but PTH is elevated. Additional lab tests including ionized calcium and urine calcium may be helpful in making the diagnosis when the presentation is not classic.

Learn more about the function of your parathyroid glands and the classic presentation of the disease by listening to this podcast:

 

Learn more about the normohormonal and normocalcemic presentations by listening to this podcast: 

 

What are the symptoms? There are many. The mnemonic Stones, Bones, Moans, Groans, and Psychic Overtones is one way the medical community refers to symptoms of pHPT. These include, but are not limited to, bone and joint pain, osteopenia, osteoporosis, kidney stones, heart fluttering or palpitations, heart attack, hair loss, inability to sleep through the night, brain fog, gastrointestinal distress, GERD, anxiety and depression. Symptoms are often vague and erroneously attributed to various conditions such as menopause, osteoarthritis or psychiatric disorders; although a parathyroid adenoma later proves to be the root cause of the patients’ symptoms.

Are there any drugs that can treat this, instead of having surgery?
There are no drugs that can reverse the disease process and make the adenoma shrink or disappear. Surgical removal of the parathyroid adenoma is the only cure. It is our understanding that the drug Cinacalcet is used to treat those with secondary hyperparathyroidism, which is hypercalcemia that is secondary to kidney disease. It is also sometimes prescribed for those who are not eligible for surgery and/or who have had failed surgeries and cannot be cured. Additionally, the osteoporosis drugs (Bisphosphonates) cannot improve bone density when an adenoma is present.

Can I just “wait and see” whether my symptoms persist or worsen? 
Excess calcium in the blood stream can cause serious complications over a period of years. The calcium interferes with digestion and can lead to GERD and ulcer formation. The excess calcium can deposit in the kidneys as kidney stones and ultimately lead to kidney damage. Excess calcium in the blood can cause calcification in the blood vessels and ultimately heart disease and heart attack. Left untreated, calcium can be deposited all over the body and cause calcification of various organs. Depletion of calcium from the bones leads to osteoporosis and fractures.

What should you do if you suspect that you have primary hyperparathyroid disease? 

Become an informed patient: Request copies of your lab work. Understand that the normal ranges for calcium values vary slightly from lab to lab, but more importantly often do not take into consideration variations for a person’s age. Adults over age 30 generally feel best with calcium values in the 9’s with an upper limit of 10.1.

Research: Do not assume that your doctor will know a great deal about this disease, particularly if you present atypically as either normohormonal or normocalcemic.

Advocate: If doctors are dismissive of values you now understand are indicative of the disease, or your doctor proposes the ‘wait and see” model of care, be prepared to educate. There is no such thing as “mild” primary hyperparathyroid disease and it does not get better on its own. Surgery is the cure.

Self-refer if necessary: We all found we needed to self-refer to an expert surgeon. Many patients do not realize that this is indeed possible.

Pick your surgeon carefully: All endocrine surgeons are not created equal. Some surgeons only remove the parathyroid gland with the adenoma that is seen on imaging studies, such as Sestamibi scans or ultrasound scans, and do not look for other bad glands. Others will do exploratory surgery for several hours in the hope they can find the bad glands, as they are very difficult to locate. As a result, excessive scar tissue forms, making it far more difficult and sometimes impossible for a patient to have a successful second surgery if this becomes necessary. It is important to find an expert surgeon that has performed hundreds of parathyroidectomies. Ideally, they should know how to locate and assess the 4 glands in under an hour.


We are NOT medical professionals….we are patients turned advocates! Our mission is to raise awareness and advocate for IMPROVEMENT in diagnosis and standards for surgical treatment of Primary HyperPARAthyroid disease (pHPT). According to the medical community, surgery is the cure and in our cases, it was indeed with the right surgeons! The decision whether to have any type of surgery is a deeply personal one and as always, it is important to weigh the benefits against the risks and carefully select the surgeon.

3,2,1…the countdown begins! Meet the Founder of the Bone Girls Club – SANDI PUTNAM

This is the first of a series of blogs entitled, “3,2,1 … The Countdown Begins” that we will be sharing to introduce you to the various speakers we’ve lined up for our 2nd Annual Parathyroid Peeps Retreat November 3-6, 2016 at Miraval Resort and Spa! We hope you will be able to join us for this amazing, all inclusive get-away in Tucson, Arizona. The Parathyroid Peeps Retreat cocktail party, sessions and giveaways are a bonus to the programs and spa services offered at the resort and are available only to those who register using our discount code. Our special group rate is guaranteed through August 31.

To ensure your space, please register ASAP. Learn more about the retreat and how to register here.

Sandi PutnamMEET SANDI PUTNAM  – She will be speaking at the session entitled,  “My Osteoporosis Journey and the Elusive Root Cause”. We first met Sandi through our Facebook page. Sandi is the founder of the  Bone Girls Club in Tucson, Arizona and is the administrator of the group’s Facebook page.  She introduced us to  Dr. Lani Simpson DC, CCD  and author of the “No Nonsense Bone Health Guide which led to our doing a webinar together , given Dr. Lani’s interest in ruling out primary hyperparathyroid disease as a possible root cause of osteoporosis in the patients she sees.

Last year, given we were making the trip to Miraval located in Tucson, Arizona where she lives, we hatched the plan to meet up with Sandi and the Bone Girls to share our stories. Sandi did not know at the time however, that the root cause of her own osteoporosis was primary hyperparathyroid disease! It was her encounter with the Parathyroid Peeps that turned on the switch to enlighten and pursue this debilitating disease.

Sandi’s personal health journey includes having had spontaneous fractures caused by too many years on bisphosphonates, followed by a course of Forteo, to heal those fractures, and more recently a diagnosis of primary hyperparathyroid disease and self-referral to Norman Parathyroid Center for surgery in April 2016, with Dr Deva Boone as her lead surgeon.

In the course of discovery and learning, she started a bone health advocacy group in 2013 in Tucson meets twice a month at a local library to address bone health issues, and more recently, parathyroid concerns and awareness. These are Bone Girls Club (and Guys)  of Arizona.

Sandi Putnam was born and raised in Michigan, became a medical technologist in 1960 and worked at that for 35 years. She is married with a daughter and a grandson in Texas and lives with her husband in Tucson, Arizona. During her husband’s 25 year career with Eastman Kodak in professional markets, the family relocated around the USA that gave the couple and their daughter, many enriching experiences.

In a twenty year time frame that she was able to do so, Sandi owned and kept horses and enjoyed horseback riding, served as a mounted patrol volunteer in a nearby national park for a number of years; continues to enjoy swimming, walking, Yoga, Curves resistance training, sewing and gardening and managing a household and an active life of retirement with her husband, Doug.

Sandi hopes to see you at Miraval!