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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Me estoy redescubriendo!

Me estoy redescubriendo!

3.-one week after

Conozcan a Yvette Serrano Camou

Hola soy de Mexicali, Baja California. En Pasteleria Ochoa hago pasteles para muchas novias. Siempre soñé con hacer los pasteles para mis hijos cuando ellos se casarán. Hace dos años se casaron dos de mis tres hijos. No les pude hacer su pastel y me la pasé sentada durante las dos bodas porque me dolía el solo hecho de caminar. Estoy muy agradecida que por fin tuve un buen diagnóstico y encontré un excelente cirujano.

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Por más de 5 años estuve enferma.

De ser una persona tan optimista, activa y vaga, no quería salir de mi casa.

Me habían operado de la rodilla, pero el dolor tan intenso en el hueso no me dejaba caminar, ni manejar. Tuve que usar silla de ruedas.

Estaba en un estado de depresión, sin saberlo. Me di cuenta después de la operación porque me sentí contenta otra vez. Notaba que me enojaba fácilmente por cualquier circunstancia y no lo podía evitar. Me volví una persona muy distraída.

Tenía la piel muy seca, fui con el dermatólogo y me dio una pomada y receto vitamina B , que no me sirvió.

Se me caía mucho el cabello.

En el 2014, empecé con dolor de riñón, no tenía piedras. Fui con el nefrólogo, y me dijo que estaba bien.

En el verano del 2016, me diagnosticaron con un alto grado de osteopenia. Mi T- Score: AP Columna -1.3. Fémur derecho -2.2. El especialista en osteoporosis me receto Prolia (denosumab) un tratamiento para osteoporosis por 6 meses.

Fue cuando decidí ir con un endocrinólogo a pedir una segunda opinión. Fui con el Dr. Alberto Solano en Guadalajara, al ver que mi nivel de calcio en la sangre, por los últimos 5 años era de 10, 10.2 y 10.3, me mando hacer el estudio PTH, para saber el nivel de la hormona paratiroidea. Los resultados del examen PTH mostraron que tenía 184 pg/ml., cuando lo normal es entre 10 y 69. El diagnóstico fue hiperparatiroidismo, me tenían que operar para quitarme el tumor.

El Dr. Solano me recomendó que buscara un cirujano que tuviera la experiencia en operar la glándula paratiroidea. Me recomendó que buscara a un cirujano que fuera especialista en operar paratiroides y le preguntara que tan seguido las operaba.

Encontré a Norman Parathyroid Center en Tampa, Florida. Me operaron en diciembre 2016, un mes después de saber el diagnostico.

Llegué temprano al hospital y como a las 2 horas entre al quirófano. La operación duro como media hora. Estuve 2 horas en recuperación. Salí del hospital y me fui al hotel a comer nieve. Mi cuello estaba inflamado, como si tuviera una pelota de golf. No tenía mayor molestia, ya que podía hablar perfectamente y comer.

Esa misma noche estaba cenando en el restaurant. Me quede un día más en Tampa. Al día siguiente me fui de turista.

2 - day after surgeryDespués de la operación sentí que ese dolor tan intenso en la rodilla que había tenido por varios años, que no me dejaba caminar, se me quito. Al paso del tiempo los otros síntomas han ido desapareciendo. Ahora es cuando me doy cuenta de lo mal que estaba.

Una semana después de la operación me empecé a untar aceite de vitamina E en la cicatriz y ya casi ni se nota.

Continúo tomando Citracal +D3 cada 4 horas. En abril 2017, cuatro meses después, me volví a hacer los exámenes. Mi nivel de Calcio disminuyo a 9.2 mg/dl. Al hacerme la densitometría también la osteopenia disminuyo notablemente con mi T-Score : AP Columna -1.0, y Fémur derecho -2.1.

Recobre mi confianza, seguridad, alegría y libertad!!!!!!

4- two weeks after surgery blogger foto

 

 

 

Recovered life!

Recovered life!

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Meet Yvette Serrano –  I’m Yvette from Mexicali, Baja California, Mexico. At Pasteleria Ochoa,   I make wedding cakes for lots of brides. I always dreamt about baking my children their own wedding cakes. Two years ago, my eldest son and then my only daughter got married. Their weddings were both beautiful! However, I  wasn’t able to make a  wedding cake for either of them and there was no dancing for me while suffering from primary hyperparathyroid disease.  I am very lucky that I was finally diagnosed correctly and had an excellent surgeon.

 


It all started about five years ago. I changed from being a very optimistic, active, outgoing person, to one that didn’t want to leave the house.

I had knee surgery, but the pain was so intense, I could not walk, nor could I drive. I had to use a wheelchair. My orthopedist couldn’t find anything wrong. It wasn’t my knee that hurt however, it was my bone that hurt.

I started having mood changes. I got angry very easily for any reason and I couldn’t avoid it. I also became very absent-mined. I was depressed without me even noticing it.  (I only realized it after the operation, I felt happy.)

My skin became very dry. The dermatologist prescribed vitamin B, which did not work.

I had hair loss.

In 2014, I had kidney pain, but did not have kidney stones. The specialist couldn’t find anything wrong.

In 2016, I was diagnosed with osteopenia in the femur and the spine. My T-Score: AP Spine -1.3, Right Femur -2.2. The specialist suggested Prolia (denosumab) treatment for 6 months.

I decided then to see an endocrinologist to get a second opinion and scheduled an appointment with Dr. Alberto Solano in Guadalajara, Mexico. After seeing that for the past five years my blood calcium level was 10, 10.2, and 10.3, he ordered PTH tests to check parathyroid hormone levels. My result for the PTH test was that I had 184 pg/ml, when the normal values are between 10 and 69. The diagnosis was I had hyperparathyroidism. I had to have surgery to remove the parathyroid tumor.

Doctor Solano recommended I find a surgeon who had experience operating on parathyroid glands and suggested that I ask specific questions; for example: Do you specialize and perform only parathyroidectomies? How often do you perform them?

After research I found the Norman Parathyroid Center in Tampa, Florida, who specializes in parathyroid glands. I was diagnosed in November 2016 and a month later in December had arranged to have surgery there.

I arrived early to the hospital and waited about 2 hours to be sent to the operating room. The operation lasted about 30 minutes or less. I stayed 2 hours in the recovery room and then returned to the hotel to eat ice cream. My throat was swollen as if I had a golf ball, but I could speak and eat perfectly. I had no pain.

1 - post surgery1

2 - day after surgery

That same night I was eating at a restaurant. I stayed one more night at the hotel, but it was not necessary, I felt great. Went sightseeing the next day.

After the parathyroid operation, the excruciating pain I had in my knee was gone and the other symptoms went away too.

A week after the operation I applied vitamin E oil on the scar, all the lumps disappeared. You can barely see the scar.

I continued taking Citracal +D3 every 4 hours. 4 months later, in April 2017, I had labs done for a checkup, and my results were the following: Calcium 9.2 mg/dL, and PTH 72.20 pg/mL, and my T-Score: AP Spine -1.0, Right Femur -2.1 (which means I only have osteopenia in the femur and not in the spine anymore).

I have recovered my confidence, security, happiness, and freedom!!!!!!4- two weeks after surgery blogger foto

Editors note: We are thrilled to be able to share Yvette’s story again in the near future, but this time in Spanish. We have always wanted to be able to share posts in different languages and we are honored to be able to collaborate with Yvette to make hers our first!

Yvette invites you to contact her to ask any questions you may have in Spanish or English at  yvetteochoa2@hotmail.com. or through Facebook at Yvette Serrano Camou 

A Year In The Life….

A Year In The Life….

 Meet GSandi Putnamuest Blogger Sandi Putnam – Sandi 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 which provided the couple and their daughter, many enriching experiences. In a twenty year time frame that she was able to do so, Sandi kept horses, enjoyed horseback riding and served as a mounted patrol volunteer in a nearby national park for a number of years. She continues to enjoy swimming, walking, yoga, Curves  training, sewing and gardening as well as managing a household and an active life of retirement with her husband, Doug.

On April 4, 2017, four Tucson women who had been to Tampa in a ten month time frame went out for lunch to celebrate my one year surgery anniversary. I was the first of us four to have surgery at Norman Parathyroid Center exactly one year to the day. Through my friendships with two of them for a number of years, I was able to help affirm their decisions to choose NPC. Three of us are retired medical professionals and the last, Betty  who was tenaciously looking for answers to her health problems.

Sandi and Betty

Sandi with Betty at one year “anniversary” celebration.

This fourth person came on board when she heard about the Parathyroid Peeps meet up in Tucson in November 2016, a courtesy event hosted by Barbara, Joyce and Sophie at their hotel, which preceded their second annual workshop at Miraval with Dr. Deva Boone, who arrived a few days later. Later that same week, I was privileged to be on the program with Dr Boone as a presenter from a patient’s perspective.

Here is our overview. All four of us had surgery in Tampa between April 2016 and February 2017. Our cumulative years of going undiagnosed are about 50 years. None of our primary doctors or specialists were as convinced as we were of having pHPT, after each of us independently, had spent a good deal of time on the NPC web site. For the most part, doctors around the world do not understand that anyone over age 30 should not have a calcium over 10.0. This is because of their reliance on our laboratories which report a reference range that goes into the mid 10’s, so we were all lumped together and considered ‘normal.’ Even those of us whose calcium levels were in the 11’s,  apparently didn’t raise any red flags.

One woman was refused a referral to an endocrinologist for a workup, so like the rest of us, she downloaded the Calcium Pro app to help move her forward. We are only a few of the countless who are self-diagnosed and ultimately confirmed through consults with NPC. Only one of us had the classic elevated serum calcium and elevated PTH, the others had only elevated calcium. This made it all the more difficult to prove that we needed surgery. Between us, we had ALL of the symptoms on the NPC chart. We all had osteoporosis for which bone drugs were indicated, at least to our doctors. Between us, we believe we interacted with all 7 of the NPC surgeons on our cases. Our experiences with the rest of the highly professional and skilled staff at NPC were exceptional and courteous at every step. Each one of us had a procedure that lasted 30 minutes or less with incisions no longer than 1.5 inches. We were back at our hotels within a few hours of arriving at the center for our operations. Today, our scars are all remarkably minimal and continue to fade away.

Adenomas

A photo of each of our “culprits”…                non-cancerous parathyroid adenomas producing too much PTH!

Early on, each gave consideration to having procedures done locally, but independently we earnestly believed that the most successful outcomes would be at the hands of the surgical team at NPC. Our convictions rang true, as each one, in turn, returned home.  No facility does as many surgeries on a daily basis.  At NPC we had minimally invasive radio-guided surgeries. However, the probe was not used to locate the adenoma or glands like a “metal detector”.   Instead, the probe was used only to measure parathyroid hormone output of our adenomas and the biopsies of our remaining healthy parathyroid glands (generally three) to help ensure that we were cured.  It is not clear to us whether surgeons elsewhere locate and check PTH output of all adenomas and remaining health glands using the radio guided probe in this way.  Nor did these experienced surgeons have to “explore”.  Instead they use their expert understanding of the neck’s anatomy to locate all four glands in short order.

Had we chosen other surgeons and facilities, we were almost certain to face a longer time in surgery, which could also mean a longer recovery.  Likewise, it might have meant a less certain outcome because frequently, if surgeons are not as experienced, all four parathyroid glands are not checked. Nobody complained about pain afterward. Most of us had a meal shortly after being back at our hotels.

It is important to note that the post-surgery calcium protocol differs by quite a bit among other practices. Two of us were pretty much the text book NPC post-surgery calcium supplement intake, but two of us needed LOTS of extra calcium that was recommended by each one’s surgeon initially and subsequently coached along by the diligent and easily accessible staff in Tampa. These needs, early on, were determined by our surgeons before we took our first calcium pill. None of us ended up in the ER with a calcium IV due to the sudden drop to normal of our serum levels. Anyone who felt she needed other questions answered, found that being in touch personally with one of the nurses or her lead surgeon was easy.

While each of our stories is somewhat unique and each of our travel and lodging experiences vary somewhat, our procedures were all done in an expeditious manner, our recoveries were well underway in short order and we are collectively rid of our pre surgery symptoms and feel fantastic. Everyone’s labs in the following months are back to normal. Meanwhile, each of us knows at least one or two other people with this disease, whose doctors are not doing proper workup, diagnoses, or least of all, recommending surgery. They are victims of the ‘wait and see’ treatment plan. Each of us has become an advocate within our own circle of friends.

We are looking forward to having Parathyroid Peep Sophie Freedman, as a brand new resident of Arizona. This will afford us a unique opportunity to schedule regular meet ups in the state of Arizona, so that we can share our stories and take an active part in ongoing awareness and support of parathyroid disease.