Parathyroid Redux: A second surgery after 15 years

A PHPT diagnosis at 40

harvhobby2a.jpgI’m 56 years old — and it seems like another lifetime ago that I was forty, single, working a job I loved, and enjoying good health. While not especially athletic, I still participated in equestrian sports, cycling, and weights. I worked full time as a library reference department head in an academic library. Life was good!

My workplace covered twice-a-year bloodwork which proved valuable to early diagnosis. I got regular bloodwork to monitor mild anemia but otherwise nothing unusual. In the fall of 2002 though, my results came back with a new anomaly. My calcium level was slightly elevated — 10.4 (reference range 10.2). I figured it was a mistake, or a fluke, maybe I was dehydrated? I had no symptoms, so it was easy to rationalize. That spring it was just a tad higher, 10.6, so off to the doctor I went. My GP didn’t seem too concerned but sent me to both an ear/nose/throat (ENT) doctor and an endocrinologist. As you might guess, a battery of tests ensued.  While I don’t recall all of them, who could forget the 24-hour urine collection, and lugging a gallon of pee to the hospital? I’m sure more blood was taken to test parathyroid(PTH) and thyroid (TSH) hormone levels; I had a Dexascan to assess bone density; and an ultrasound of my neck was performed. The main findings were that my PTH was high, by about 30-40 points, and I had low bone density (osteopenia). Not. Good.

Bone density and PTH

You may know this already, but I’ll mention this because for me, it was a big deal. Wonky PTH levels can mess with your bone strength.  PTH does a lot of things, I suspect, but it tells the bones to release calcium, which then goes into the bloodstream. When PTH levels are normal bones maintain an optimal level of calcium. When the PTH level is too high, bones release calcium, which weakens the bones.  The released calcium goes into the bloodstream among other places, and that’s why high blood calcium is a symptom of PHPT. Another symptom which is “silent” is low bone density. There are lots of reasons you might lose bone density, but this is one of them.

So, my parathyroids are running amok

My diagnosis was PHPT and osteopenia (low bone density). Three doctors weighed in, and their advice was all over the map. My GP was skeptical that I had PHPT — it’s not a “young” person’s disease. My ENT said surgery wasn’t needed for levels this low. My endocrinologist, who in retrospect was the guy who knew his stuff, wrote polite but pointed letters to all of us explaining the professional guidelines for PHPT treatment — that at my relatively young age, with calcium likely to increase and side effects likely to worsen, surgery is indicated.

DIY Research

I was confused, if not a little freaked out, by these varied opinions. As a librarian I had research tools at my disposal — time for some DIY medicine! I obtained a book from the UPenn Libraries, entitled something like The Big Book of Parathyroid Disorders. I read it cover to cover. I also did a citation analysis to find out what universities contributed the most to the field of thyroid/parathyroid research. Fortuitously, that institution had a Thyroid Center with a patient hotline. The advice from the surgical nurse who worked the line: “Go to the best. You don’t want a surgeon that does three of these surgeries a year, you want someone who does at least fifty.” And she was quick to point out that one of the best surgeons in the country was in my backyard. At the time, Dr. Douglas Fraker at University of Pennsylvania (UPenn) had a near-100% success rate with first surgeries. He was the go-to guy for second surgeries (when the first surgery fails), and people came to him from all over the country when their first surgeries were botched.

I remember the consultation, Dr. Fraker’s confident and genial manner, and more tests. He ordered some sort of scan (nuclear?)  that localized the “problem gland” among my parathyroid glands. I made the one-hour drive down to UPenn and had the surgery. I remember post-op Dr. Fraker telling me that he had some trouble localizing the problem parathyroid gland tissue, but that the surgery was successful.  I went home the next day with a teensy scar and normal calcium levels. Within a week I was back at the gym, and for fourteen years my calcium and PTH levels remained normal. It was a textbook good outcome.

Fast forward to 2017

I continued to get regular bloodwork. In about 2015, I sort of knew something was percolating with my parathyroids. My blood calcium started to rise, and with each test I saw a slight increase in serum calcium. Finally, in 2017, it hit 10.4.  I went back to my endocrinologist in October of 2017.

It was all too familiar. We did repeats of most of the tests I had in 2002. This time my PTH level was high normal, but the Dexascan was alarming — my T-scores showed a dramatic decrease in bone density — I had osteoporosis, even in the forearm, which usually doesn’t lose density. Apparently bone-thinning in the forearm is a sign of parathyroid issues, so if they suspect you of having PHPT, they may order a Dexascan that includes the forearm in addition to hip, spine, etc.   Based on the overall picture the tests revealed, a recurrence of PHPT was suspected.

But this time it was a bit more complicated. A nuclear scan and an ultrasound failed to reveal an area of concern or localized tumor. Second surgeries are tough, in part because there is scar tissue from the first surgery that obscures the structures of the neck.  Surgeons don’t like to just “go in and explore” the neck, in part because the vocal cords,thyroid, and the jugular vein are delicate and easily damaged.  In these cases, nuclear, ultrasound, and other scans are critical to finding the overproducing tumor’s location to aid the surgery. I was in a bind. Surgery in the absence of a known tumor could be risky, but at the same time with my osteoporosis a “wait and see” stance was risky too.

Back to UPenn

I needed to find a surgeon and as before, I contacted UPenn.  Dr. Fraker had left UPenn just a few months earlier to assume a position at Rutgers U. I immediately started my own research to find a surgeon and ultimately decided to stay locally when I learned that Dr. Rachel Kelz at UPenn was Dr. Fraker’s protege. I scheduled an appointment with her.

The consult
When I met with Dr. Kelz, I was worried — osteoporosis at 55! I had a list of questions. Over the years I’ve learned that you have to do your own homework in making health care decisions — health professionals tend to be good folks, and they want to help, but they’re busy and sometimes they have their own agenda. In my first meeting with Dr. Kelz, I tried to be tactful but asked tough questions. What is your success rate? How are your procedures/techniques different from other hospitals? Why are these procedures better? Dr. Kelz did not bat an eye to any of these questions, and she was actually very jovial. It became clear I wanted her to be my surgeon. After my “tough interview,” it was ironic that she was hesitant to recommend surgery — with repeat surgeries, it is especially important to know where to look, and my scans had turned up nothing. As a last-ditch effort to find a tumor she ordered a 4D CT scan — in a 4D scan, the 4th dimension is time. The scan allows time for the hormone to accumulate and light up the image, I think. While she didn’t refuse to consider surgery, she said “if the 4D scan shows nothing, come back and we’ll talk about the advisability of exploring the neck.”

4D CT Scan

Not many places do the 4D scan, and even with a list of hospitals that do it, calling to schedule the appointment was a challenge. No one in the scheduling pool knew what it was, and even when I arrived for the appointment, the technician seemed to be confused when I tried to get confirmation that she’d be doing a 4D scan. She was on the phone for a half-hour getting directions from someone; it took so long that while sitting on the scan table, I started to make calls to UPenn to make sure the paperwork was right. When they finally did do the scan, it was over so fast I wondered if they had captured that time dimension. I was not expecting a good result.

At last we’ve found you!

The 4D scan did it! The upper right portion of my neck showed a tiny piece of gland/tumor that appeared to be tucked behind the thyroid, presumably overproducing PTH. Dr. Kelz was able to review Dr. Fraker’s notes from over a decade before. He had removed tissue from that area, and in the scan you could even see the sharp edge where the scalpel had been, right next to the tumor. Dr. Kelz posited that there may be a second lobe of the gland that was hidden in the folds of the thyroid and missed in the first surgery. We scheduled the surgery.

A second surgery

On the day of the surgery, I was waiting in pre-op when a familiar face peered into my room. Dr. Fraker! He had returned to UPenn (returned to his former position!) and would observe at my surgery while Dr. Kelz operated. After the surgery, Dr. Kelz told me that they had found a tiny tumor/node very close to the previous surgical site. They were even able to compare the tissue removed in 2018 to the lab slide from 2002 — same tissue — so this was not a new tumor/node, it was a tiny (leftover? microscopic?) piece of the original tumor that was removed in 2002. I guess it grew oh-so-slowly and over time bumped my calcium back up. When I left the hospital, my calcium level was 8.4 and it has hovered around there ever since. My surgical scar is about the same as it was in 2002 — barely noticeable. While I was sore the first day, I recovered quickly. Two weeks after my surgery I ran in a half-marathon!

Long term

I’m taking Fosamax for osteoporosis, a tough decision since new research shows some adverse effects of Fosamax for some folks that take it. In the end, though, my endocrinologist convinced me that the low risks of these problems (which occur mostly in folks taking Fosamax more than three years) is more than offset by the risks of a broken bone. Fosamax reduces the incidence of bone breakage — so I’m on it. With any luck my bones may rebuild what was lost in the years I had a hormone imbalance.

My advice:

  • Get informed. Don’t rely solely on your doctor’s knowledge/experience. You can search the Web, but stick to the research. Be wary of anything but clinical research reports, or journals summarizing them.
  • Go to the best. This is tough, because some insurance limits where you can go. Consider asking your doctor to write a letter advocating that you go out of network, if necessary. It will be cheaper than a second surgery, and better for your quality of life.
  • Speak up! Ask questions, and don’t worry so much about offending your health professional. They’re tough, they can take it.

Thanks for reading my story, and I wish you all the very best.

raceMeet Stacey Kimmel….

Stacey worked as an academic reference librarian for many years before entering higher education administration. An avid equestrian, runner, cyclist, and writer, she occasionally posts to her blog behindthebitblog.com. She enjoys beadwork, all kinds of music, spoiling her cats, and travelling with her husband Bob.

Meet Dr. Courtney Balentine – Learn about research being done to improve diagnosis of primary hyperparathyroid disease.

balentineUAB

Courtney Balentine, MD, MPH
Dallas VA Hospital, Division of General Surgery
Assistant Professor, University of Texas Southwestern

 

 

 

Today we had the pleasure of chatting with Dr. Courtney Balentine about research he is leading entitled, “Failure to Diagnose Hyperparathyroidism in 10,432 Patients With Hypercalcemia: Opportunities for System-level Intervention to Increase Surgical Referrals and Cure” , Balentine CJ, Xie R, Kirklin JK, Chen H.  The research has promise for improving diagnosis of primary hyperparathyroid disease. You can read a summary of the paper here. 

We are excited for you to hear directly from Dr. Balentine about the findings and next steps.

 

 

 

An Open Letter to the Hellenic Endocrinology Society (Greece)

In October guest blogger Rochelle Lambiris, a parathyroid patient turned advocate in Greece, shared her parathyroid journey with us.  Read her full story through this link.

Rochelle is now reaching out to the Hellenic Endocrinology Society through the Open Letter below in hopes of creating change for those who suffer from primary hyperparathyroid disease.  There continues to be a lack of awareness of the symptoms and biochemical presentation of primary hyperparathyroid disease in both the patient and medical communities around the world.  Rochelle hopes that by educating and raising awareness, needless suffering can be avoided in the future.

Read and share her Open Letter,  and if so inclined, reach out to Rochelle through the contact information she has provided below to see how you too can help raise awareness of primary hyperparathyroid disease in Greece.

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OPEN LETTER TO ΕΛΛΗΝΙΚΗ ΕΝΔΟΚΡΙΝΟΛΟΓΙΚΗ ΕΤΑΙΡIA -THE HELLENIC ENDOCRINOLOGY SOCIETY

For several years you have organized the very successful “ENDOCRINE VILLAGE” in Athens where information on endocrine disorders is freely available for the public as well as tests for certain illnesses. However, up till now there has been no information regarding hyperparathyroidism and no tests either.

Hyperparathyroidism is NOT a rare disease, in fact, it is quite common.* Its incidence is difficult to ascertain because many sufferers continue their lives – often with serious symptoms – without having been tested or diagnosed.

We are NOT doctors: you are. And of course you are much more knowledgeable than the people who have….or suspect they may have….the disease. But messages similar to the following are voiced by members of patients’ groups all around the world:

“My calcium was high for years. Why wasn’t this investigated further?”

“I kept producing kidney stones and going to hospital to have them removed. Why didn’t they check me for the possibility of hyperparathyroidism?”

“Worsening osteopenia and high calcium year after year….why did nobody think to check for hyperparathyroidism?”

We are well aware that there are a multitude of potential symptoms, and that many can be attributed to the menopause, aging, or other conditions.

However, all we would like to suggest is that you take a big step forward and include a few basic tests for the possibility of hyperparathyroidism…perhaps serum calcium, PTH, and vitamin D: if all these are not feasible, maybe at least serum calcium could be tested. This would not constitute a definite diagnosis but would indicate the possibility of having the disease so further investigation could follow.  And years of potential suffering might be avoided, as well as costs to the State of multiple tests etc. over time.

Perhaps your example would be followed by other countries in the future?

Thank you for your time,

Rochelle Lambiris

Patient Advocate – HYPERPARATHYROIDISM GREECE

Facebook Link        E-mail: hyperpara.gr@gmail.com

* References

www.ncbi.nlm.nih.gov/pmc/articles/PMC4771429/  It is the third most common clinical endocrine disorder after diabetes and thyroid disease

http://www.yourhormones.info/endocrine-conditions/primary-hyperparathyroidism/ It is the third most common endocrine disorder in men and women.

Biology assignment provides hope

Biology assignment provides hope

Earlier this month my 6th Grader came home with her biology homework. As she was reading out loud her assignment called ‘Feedback Loops’, I realized that it was about the functions of the parathyroid glands! And there is was, an explanation of how your 4 parathyroid glands function and how they monitor your calcium levels and produce parathyroid hormones (PTH). I have to admit that I was blown away (and elated I might add)  that a teacher would bring the parathyroid gland topic to a class full of 6th graders.

My daughter’s reaction upon reading the article was to ask me why the article didn’t mention anything about parathyroid tumors. This made me smile…that’s my girl! I explained to her that her assignment was about the roles of the 4 glands, not to diagnose someone whose parathyroid glands are over producing PTH. Can you imagine if kids in the US learned about possible dysfunction of the glands and parathyroid tumors in 6th grade?

OK, back to reality now from wishful thinking – but I did tell my daughter to please specify on her assignment that the normal calcium levels are age dependent and that a mature adult should always be in the 9s (see chart on the left).  That’s how a mature adult would know they have perfectly nice performing parathyroid glands! Everyone needs to know the highest level of normal calcium value for their age.

This school assignment is making me hopeful that the role of parathyroid glands is not some obscure topic and that biology teachers in our country are indeed paying attention to our calcium levels. I am also hopeful that in the near future all our doctors will be educated on the ‘feedback loops’ and will recognize early on, the signs and symptoms of parathyroid disease, so no one is left untreated for years!

Sophie

Rochelle’s Story – From Patient to Advocate in Greece

Rochelle’s Story – From Patient to Advocate in Greece

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By Guest Blogger – Rochelle Lambiris

In 1971 I’d booked a holiday to Tunisia. But fate intervened and I finally came to Greece with some friends. Four days before we were due to return to England, I met someone….10 months later we were married! So now I’ve been living in Greece for 45 years. The culture shock in the beginning was huge, and not knowing a word of the language didn’t help matters. But over time one adapts and embraces a different way of life. It’s a beautiful country, with the sea never too far away, islands that often seem to belong to the past, magnificent mountainous scenery reminding one of the Alps, and of course treasured ancient monuments.

As far as health care is concerned, despite the problematic economic condition the country is in, Greece has many excellent doctors of all specialisations who strive to do their best. But as we all know, some are more knowledgeable and experienced than others….

My parathyroid story is pretty typical: after years of having high calcium, osteopenia, crystals in the bladder- all measurable symptoms – and other more subtle ones such as muscular weakness, intense exhaustion, red eye, severe vomiting, weight loss, etc, – I went to an orthopaedic specialist for a referral for my annual Dexa scans. And I asked him this life-changing question: “Are there any other useful tests that I could have?” He thought about it and then sent me for a PTH test…the first time I’d ever heard of the parathyroid glands. The result was 143 pg/ml, with the upper limit  being 65 pg/ml. He told me to see an endocrinologist.

So for nearly 5 years I went to a professor of endocrinology, and every 3 months he sent me for a huge range of tests…blood, scans, Xrays, urine….Although he diagnosed me with hyperparathyroidism, since nothing ever showed up on the imaging tests he was hesitant to recommend surgery since he feared I’d develop hypoparathyroidism which would be extremely serious. All this time my symptoms were getting worse and there were days when I could hardly get out of bed. Of course I wanted a second opinion, but where to go? I knew of nobody who had the disease, and was reluctant to start doing the rounds without useful results.

In November 2015, fate intervened again: someone I knew and respected had gone to a new endocrinologist and highly recommended him, so I went to see him. He immediately appreciated the gravity of the situation, sent me for a few more tests and then recommended an incredible surgeon. When we met him, he explained that he couldn’t give us a 100% guarantee that he would be able to locate the bad gland or glands, but felt pretty confident that he would. And he did: one adenoma was deeply embedded down the back of the neck, and the other was ectopic, clinging like a leaf to the oesophagus. My good fortune continued: I was one of the estimated 20-30% of sufferers who have an extremely rapid recovery post op. My photo shows me and my scar….my little smile on the neck! I have been so lucky….

However, it was only about 2 weeks post op that I ventured into the world of Facebook to investigate hyperparathyroidism:  up till then I had only dabbled…I joined a couple of groups and my eyes were opened. Such pain, suffering and despair, isolation, insufficiently knowledgeable endocrinologists, insufficiently experienced surgeons…and the list continues. It’s one thing reading information from Dr Google, but quite another to hear directly from the sufferers.

 In March 2017,  with the aim of informing and supporting people with the disease, I started the closed group on Facebook in Greek and English called

HYPERPARATHYROIDISM GREECE – ΥΠΕΡΠΑΡΑΘΥΡΕΟΕΙΔΙΣΜΟΣ ΕΛΛΑΔΟΣ

I felt I had been extremely fortunate that, after a number of difficult years, I had been able to have a successful parathyroidectomy in Greece and wanted to try to promote general awareness. This is not an easy task at all, and I sincerely hope that you will spread the word about our little group far and wide! It is in English and Greek and we welcome people from other countries.

At the moment we have about 57 members, more than half of whom are not from Greece: information and support should be international. It is incredibly hard to find Greek sufferers and at times I wonder if we ever will! So please spread the word…we need all the help we can get.

For Greek speakers, I have very recently created an open Facebook page for basic information (note that there is a translation button on the page):

Υπερπαραθυρεοειδισμός Ελλάδος Ανοιχτή ΣελίδαFB page

Reflecting about how much sooner many of us could have been diagnosed if any of the numerous doctors we usually see during our parathyroid journey had picked up on our symptoms I wrote the following article.  It is up to each of us to ask “WHY??” and at every opportunity inform others about the disease.

THE BIG “WHY ??”

Since you are reading this, you already know something about Hyperparathyroidism even if you are not yet certain that you have the disease. Or you may be here to help a friend or relation. But even if you have been tested for PTH and calcium, you may not yet have a definite diagnosis. Think about the symptoms that this illness can often cause: for example,  kidney stones; gravel/crystals in the bladder; osteopenia/osteoporosis; red eye; gallbladder and pancreas issues; depression; brain fog; weight gain/loss; intense exhaustion; muscular weakness; bone pain; dental problems; and many more….

So start asking the doctor WHY?

WHY do I have this problem? Could it be because I have hyperparathyroidism? Could you give me tests to check my PTH and calcium levels – just in case?

Since many doctors OFTEN ignore or don’t pay much attention to symptoms, sometimes for many years, saying it’s nothing, it’s menopause, it’s only just above the limit, you’re getting older, drink more water, you’re working too hard, etc.. you must stand up for yourself and do everything you can to get the basic tests. Remember, the sooner you get a diagnosis and an operation, the sooner the harm being done to your body will stop and you can start to recover. If you do not start asking WHY, the damage to your body will get worse…

When you chat to friends and relatives, and you hear them complaining about health issues that might be related to Hyperparathyroidism, tell them about the disease and advise them to get tested so that if they do have the illness, they won’t waste years of their life suffering unnecessarily.

And to those of us who have been diagnosed and had the operation: ask yourselves this: if you had known about hyperparathyroidism before, and had started to ask the doctors WHY you had such symptoms, how much sooner do you think you might have been cured?

In conclusion, a final chilling word:

My very dear endocrinologist told me the following during a six-monthly visit in July: “As soon as I saw you, I could see how serious your case was because of the extreme muscular weakness. If you hadn’t had a successful operation, within 5 years you would have been in a wheelchair….”

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Mourning lost time…

Mourning lost time…

Recently a follower posed a very interesting question that many patients cured of primary hyperparathyroid disease may not necessarily articulate but perhaps struggle with after being cured.
Screen Shot 2017-09-18 at 9.08.54 PM                                                                                                              “How can I move on and be happy that the problem is fixed and not focus on the past? I just can’t let the past go. “
No doubt there are a  broad range of emotions – anger, disbelief and/or fear, to name a few,  that we may experience as we recover if we have gone undiagnosed for many years and/or have experienced a previous failed surgery.
                                                                                                                  First, it is important to understand that it is normal to experience a full range of emotions. It can be very unsettling to come to the realization that the health care system we rely upon and in which we may have had complete faith, failed us on many levels.
                                                                                                                                                                     It can also be difficult to wrap ones head around the fact that far too many healthcare professionals do not know enough about this disease to make a swift diagnosis. In many cases, they do not properly rule out primary hyperparathyroid when their patients present with high calcium and/or blatant symptoms and often do not think to check parathyroid hormone levels early on.
                                                                                                                                                              Here are some thoughts we’ve had that have been helpful to us and have enabled us to let go of the past…
                                                                                                                                                                    1) Focus on the important lessons learned that may one day serve us or a family member. What are these important lessons?  That we cannot blindly trust our Doctors!  They are only human and are doing the best they can but at times their knowledge (and time they have to spend with us) is limited.  It is important to always do our own research and be our own health advocate. With the information that is available on the internet and a bit of discernment it is possible to make informed decisions.
                                                                                                                                                                      For example, when my husband needed a hip replacement this past year, from experience we knew we needed to research the various surgical options available. Then we knew we needed to research the surgeons who perform the specific technique and found statistics on the number of surgeries performed and outcomes. By educating ourselves we felt confident that the surgeon we selected was the right one for the type of surgery my husband elected to have.
                                                                                                                                                                   2) Realize that you are in good company if you went undiagnosed for many years. It is estimated by experts who have performed thousands of surgeries that the average patient goes undiagnosed for 8+ years. So, sadly,  our circumstances are not unique. We have yet to meet anyone who hasn’t had this disease for many years prior to a diagnosis and surgery!
                                                                                                                                                                   3) Think about the fact that if the diagnosis were made earlier (in many instances for patients this is perhaps 8 -10 years) the surgery might have been more barbaric and/or the outcome might have been worse. Surgeons continue to gain critical experience with each surgery performed. Progress is being made and techniques continue to improve over time. In my case, if I had gotten diagnosed at onset, I believe I would have had a very different surgical experience.  The internet had not yet exploded and the information I needed to make an informed decision was not readily available. Given my adenoma was attached to my vocal cord I could have easily had a very traumatic surgical experience and might have even lost my voice. Yet in 2011 it was removed by highly experienced surgeons without incident.
                                                                                                                                                                    4) If you are one who has had a failed surgery and are then subsequently cured by a second surgery, celebrate the fact that you are one of the fortunate ones who has been cured! Sometimes the scar tissue is so extensive from a previous surgery due to hours of surgical “exploration” trying to find the four glands, that the tissue becomes like cement and it becomes impossible to remove the embedded adenoma (s).
                                                                                                                                                                   5) Reflect on the sage advice that “time heals all wounds”. Early in recovery patients in Facebook support groups often report experiencing mood swings as the body adjusts to its new normal. Patients who have gone undiagnosed for many years frequently share that, more often than not,  it does take awhile for their bodies to fully heal while others experience more immediate improvement. Each patient is unique. Be kind to yourself and try to be patient, as difficult as that can be. It is OK to feel angry. I remember crying when I woke up from surgery.  I felt betrayed by the system and was mourning lost time.
                                                                                                                                                                    6) Take action to educate and advocate. While you cannot go back in time to change your own set of circumstances, each of us is in a unique position to help raise awareness and advocate for improvement in diagnosis and standards for surgical treatment so that hopefully someone else will not have to suffer.
                                                                                                                                                                    7) Look at the process as a journey rather than a means to an end. There is no question that living with high blood calcium is bad. We felt blessed that we avoided the deadly consequence of living with high calcium. This does not however, mean that high calcium hasn’t wreaked havoc on our body! Anecdotally it seems that it isn’t all that unusual for there to be an unraveling process with further work to do to reap the full benefits of surgery. Perhaps there are thyroid issues that are discovered which need to be sorted out, work required to improve bone deterioration, a few more kidney stones still to pass and/or dietary changes to be made that can significantly improve health. Read about my own discoveries here. In other words, find delight in the opportunity to become the healthiest version of yourself.
                                                                                                                                                                 We hope these tips are useful in some way. What has helped you overcome feelings of anger, fear, frustration and/or disbelief and has allowed you to let go of the past and disappointment of lost time? We would love to hear from you.

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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