It is estimated that 1 in 100 people (1 in 50 women over the age of 50) have primary hyperparathyroid disease (pHPT) and the majority of them have no idea that they do. Most people are completely unaware that we have four PARAthyroid glands that are generally located right BEHIND the thyroid, a butterfly-shaped gland in the center of your neck, the master gland of metabolism. The parathyroid glands regulate calcium in the blood that should always remain in a very tight range that is normal. Normal ranges are age-dependent. A mature adult should never have a serum calcium value that exceeds 10.1.

If one or more of the parathyroid glands develops a non-cancerous adenoma the rogue gland produces too much parathyroid hormone (PTH) which then calls for calcium from the bones where calcium is stored. If calcium is not tightly regulated you are not going to feel well.

Given that the average patient goes undiagnosed for 8 + years, according to experts who ultimately perform surgeries to cure these patients, it is important to check your serum blood calcium levels.

If you are a mature adult and have calcium values that exceed 10.1 and suffer from any of the following conditions /symptoms, it is important to rule out whether a parathyroid tumor is the root cause:  

1. Diagnosed with osteopenia or osteoporosis or experiencing fractures.

2. Suffer from kidney stones, flank pain, frequent urination.

3. Experience atrial fibrillation, heart palpitations or stroke

4. Episodes of brain fog / confusion

5. Mood issues such as mood swings, anxiety, panic attacks or depression.

6. Gastrointestinal Issues – constipation, nausea, GERD, peptic ulcer, decreased appetite

7. Bone pain, curvature of the spine, loss of height

8. Gall Stones

9. Low Vitamin D

10. Calcification of and/or deposits of calcium in organs

If you think primary hyperparathyroid disease has perhaps been overlooked as a root cause of your problems/symptoms here are some things to do and be aware of:

• Ask to have your blood calcium, parathyroid hormone levels and Vitamin D checked together. It is their relationship to one another at the time of testing that is important in order to make an accurate diagnosis.
• Note that it is a hallmark of the disease to have calcium values fluctuate and they may fall into the normal range occasionally, even when a person is ill, therefore repeat testing is sometimes necessary for a proper evaluation.
• Become familiar with the various presentations of primary hyperparathyroid disease – classic (high calcium, high parathyroid hormone levels and low vitamin D) normohormonal (high calcium and normal parathyroid hormone levels) or normocalcemic (normal calcium and high parathyroid hormone levels).

PODCAST!  LISTEN NOW!  Learn more by listening to this podcast about the Normohormonal and Normocalcemic Presentations of primary hyperparathyroid disease:

Be well!

The Parathyroid Peeps

This is the final post in a series of blogs entitled, “3,2,1 … The Countdown Begins” that we are sharing to introduce you to the 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 was guaranteed through August 31. Rooms can now only be reserved under the special group rate on an “as available” basis. If you have been procrastinating, don’t wait a moment longer!  

Learn more about the retreat and how to register here.

We are 3 San Francisco Bay Area women who are sharing our personal journeys of overcoming the debilitating symptoms of primary hyperparathyroid disease through surgical removal of our non-cancerous adenoma(s). Our purpose is to raise awareness and advocate for improvement in diagnosis and standards for surgical treatment of primary hyperparathyroid disease.

Our peep retreat at Miraval Resort and Spa provides a haven for those who are interested in learning more about parathyroid disease or seeking a diagnosis, those being told to “watch and wait”, those who have persistent disease, and those who are cured. The curious, supporters, patients as well as medical and mental healthcare professionals are encouraged to take advantage of our group rate and hosted retreat activities.

We’ve lined up a full retreat schedule with an  amazing group of speakers .

We will be presenting at the following sessions:

• Parathyroid 101 with Dr. Deva Boone
• Parathyroid Peeps Advocacy Workshop
• Advocacy Writing Workshop

HOT OFF THE PRESS!  View the entire Parathyroid Peep Retreat Schedule here. 

As patients who have been affected by this disease, we are working to create change so that….

1. Patients as well as medical and mental healthcare professionals understand the symptoms and biochemical presentations of the disease so that diagnosis is timely.
2. Medical professionals understand that the “wait and see” model of care is inadequate and leads to more serious health issues. Hyperparthyroid disease is a silent killer.
3. Patients understand that currently surgical techniques vary dramatically. Change is needed to ensure the most advanced techniques are the standard of care.

Barbara, Joyce and Sophie look forward to meeting you at Miraval! 

Learn more about each of the Parathyroid Peeps here.

Coming Full Circle is a series of 4 Blog Posts describing our experiences visiting the Norman Parathyroid Center as patient advocates.

Blog Post #1 – Coming Full Circle – A Visit To NPC’s Clinic at Wesley Chapel

Blog Post #2 – Coming Full Circle – Dinner with the Surgeons

Blog Post #3 – Coming Full Circle – Meet-ups Expand

This is our fourth post of the series…

The alarm goes off and through squinted eyes we can make out that it is 5:00 am. in Tampa, Florida, though for us, visiting from the West Coast, our bodies are screaming 2:00 am. – ugh!  Despite it being a god-awful hour, it is the anticipation of the day ahead that gets us up and moving quickly. We brew in-room coffee… not our first choice but hey it’s caffeine, right? We grab energy bars that we had stashed in our luggage for “emergencies” and we head outside to wait at the hotel curb. At the appointed time a car pulls up…. it’s no other than Jim Norman, the founder of the Norman Parathyroid Center, there to take us to Tampa General to learn more about parathyroid disease and the surgical cure, first-hand from the experts – the surgeons at NPC and their patients.  Yes, it true that patients often become “experts” as well, after going through the process of getting their diagnosis and selecting a surgeon!

For two days we spend time at the surgical center, learning more about parathyroid disease, its various clinical presentations and their surgical techniques. Here’s just a glimpse of what we learned…

News of Expansion – The surgical group performs on average 12 to 14 parathyroidectomies per day. There are currently three operating rooms used to perform this surgical procedure. They shared with us some rather exciting news… NPC will soon be expanding into a new, larger space within the hospital that will include four operating rooms for parathyroid surgeries AND their new Thyroid Cancer Center. Watch for more news about NPC’s expansion on their FB page.

Meeting Patients – We had the opportunity to shadow the surgeons while they did their pre surgery consults. We were enlightened by being included in these discussions and were often invited by the patients to stay on to converse while they either waited for their sestamibi scans and/or surgeries. Time and time again, the patients’ stories sounded all too familiar. For the most part they all had been ignored by their GP’s and/or Endocrinologists when their calcium lab values were clearly too high to be considered ‘normal’.

Some stories seem to underscore the prevalence of the disease.  We met two women who were college friends. They both were diagnosed around the same time and so they coordinated their surgeries to occur on the same day so that they could support one another! And then there was a woman, who had the surgery herself a few years prior, now providing support to her husband. All were hopeful and anxious to get their lives back and be rid of one or more of their debilitating symptoms including, but not limited to, bone pain, brain fog, kidney stones, anxiety, heart palpitations, hair loss, and in one very rare and unusual case calciphylaxis, a syndrome of vascular calcification, thrombosis and skin necrosis.

How does an adenoma grow?- Adenomas grow out of the parathyroid gland, generally obliterating the normal gland as they enlarge. You can somtimes still see a rim of the normal parathyroid that is small and yellow with a dark red tumor growing out of it. This happens when a rogue cell multiplies. The result is an adenoma that produces excess parathyroid hormone which calls for calcium that is stored in our bones. Learn more here: http://www.parathyroid.com/parathyroid-disease.htm.

Parathyoid Non-canceorus Tumor

 Scans and Ultrasounds – Many patients have negative scans at home so they are told by their local surgeons that they have to wait for a positive scan to get surgery. NPC regularly operates on people who do not have positive scans who have tumors  The purpose of the sestamibi scans done prior to surgery at NPC help determine whether an adenoma is in an ectopic location (jaw or chest for example) which might require an alternative surgery. In most cases, the glands are right where they should be – behind the thyroid and as a result, they don’t necessarily show up on scans.

How do they find a tumor when it’s not showing up on a scan? – Once the patient is sedated and just before surgery begins, an ultra sound is performed. Because the patient is sedated the ultra sound produces better results. However NPC surgeons still do not rely on the ultrasound scan, it is simply used to inform them of what they can expect to see going in. NPC’s surgeons are trained so that they have an intricate understanding of the neck’s anatomy.

By following blood vessels, nerves and other pathways they have identified and named, they are generally able to find all four parathyroid glands in 20 minutes or less.

Note that reoperations are different and often DO require a positive scan.  Scar tissue from previous neck surgeries may obliterate the “roadmap” NPC surgeons use to find the glands.

 How is the radio-guided probe used? – There seems to be a lot of misunderstandings as well as mystery surrounding the use of the probe. Do the NPC surgeons use it to find the adenomas during surgery, like one might use a metal detector?

At NPC the probe is NOT used to “scan” or locate the adenoma(s) or the glands.

We learned that it is used only to measure parathyroid hormone output of both the adenoma and biopsies of the other (generally three) remaining parathyroid glands. The radioactive isotope used during the sestamibi scan just prior to surgery remains in the glands at the time of surgery so that the radio guided probe can detect the PTH levels. This is not the same calculation as measured in the blood – it is a radioactive count.

Once removed, the adenoma is put onto the probe and the reading immediately informs the surgeon how “active” the gland is, which correlates to the PTH output. Likewise, biopsies taken from each remaining gland are also measured on the probe.  When a tumor is creating too much parathyroid hormone, healthy ones shut down. If a gland is producing PTH then that is an indication that the plump gland also needs to be removed, as it will eventually grow into a second adenoma, thus the importance of checking all four glands. Tissues and biopsies are then sent to the pathology lab.

Prevalence of Thyroid Disease – Several patients, over the course of our two-day stay, either knew already or found out during their visit to NPC, that they had thyroid issues. While the thyroid and parathyroid glands each have very distinct functions that are unrelated, it does seem that quite a few patients with pHPT have Hashimoto’s thyroiditis. Two of the three of us have this condition. We learned that untreated Hashimoto’s can make parathyroid surgery a bit more tricky yet experienced surgeons can remove an adenoma without unnecessarily removing thyroid tissue. While nodules can be removed at the time of surgery if deemed necessary, we learned that it is quite normal to have them and they can often be left alone.

How does seeding occur? – When a “soft” adenoma is removed during a surgery it can easily break apart by an inexperienced surgeon if too much pressure is applied during removal, or the grave error is made to purposefully break it apart to aid in removal. It doesn’t take a great amount of pressure to cause this type of adenoma to burst and seed within a patient’s neck creating a situation where a patient could never be cured because each “seed” then grows into a tumor. Patients who have had this occur elsewhere come to NPC for help with management.

Front of Hospital

Find Your Way There

Check-in Desk

Receptionist Sue also had pHPT

Room with a View!

Nurse Kim is the sweetest guide!

View of NPC wing.

 Some Unique Techniques and Strategies!  

• We arrived at Tampa General thinking that this surgery was perhaps ‘easy’ and straight forward. While it often is a quick and easy surgery for the patient, a successful surgery requires highly skilled surgeons. Each case can of course be unique and therefore each has the potential of presenting its own challenges. We discovered that each surgery is performed strategically, so every patient receives the best possible care and outcome, thus their 99% success rate.

• NPC’s surgeons always work in teams of two, sometimes three, so patients benefit from the expertise of more than one surgeon. Though each surgeon is uniquely qualified, this strategy ensures greater success. A second surgeon always verifies the first surgeon’s findings.

• We were told that switching sides during the course of an operation is very unique. These surgeons actually switch sides regularly depending on which glands they are looking for.  When they are looking for right upper and lower glands, they stand on the left of the patient and when looking for the left two glands, they stand on the right of the patient.

• NPC surgeons prefer to think of the upper and lower parathyroid glands as “anterior” and “posterior” as this more accurately denotes their locations, though they still call them  upper and lower glands.

• If the surgeons do not see a parathyroid gland within a few minutes, they informed us that they move away from that area and look for another gland. This tactic is used so that when they return to the first area after a few minutes, the parathyroid gland has changed color and gotten plumper, and often “pops into view”.

• The surgeons at NPC do not explore – every move is calculated based on their understanding of the neck’s anatomy.

• The surgeons perform plastic surgery to create a clean line so that the scar becomes invisible.

We are forever thankful that the NPC surgical team spent two days explaining this disease to us in much greater detail than we could have ever imagined! This entire experience has further inspired us and we will use what we have learned to continue to help others and advance the mission to raise awareness and advocate for improvement in diagnosis and standards for surgical treatment.

Be informed! Understand the procedure you are signing up for! Here is a list of questions to help you get started in developing your own list of question to ask.

Please read our Terms of Use. As always, it important to contact your own healthcare professional, doctor and/or surgeon to learn more about your own particular circumstances and what you can expect in your case. 

Coming Full Circle – A series of 4 Blog Posts describing our experiences visiting the Norman Parathyroid Center as patient advocates.

Blog Post #1 – Coming Full Circle – A Visit To NPC’s Clinic at Wesley Chapel

Blog Post #2 – Coming Full Circle – Dinner with the Surgeons

This is our third post of the series…

Parathyroid Peeps regularly hold bi-monthly meet-ups in the San Francisco Bay Area to educate others about the disease as well as connect with those who are interested in raising awareness, those who are just beginning their parathyroid journey and others who simply want to become educated.

During our advocacy trip to Tampa, Florida, we held our first Parathyroid Peeps meet-up at the Marriot Courtyard Tampa Downtown where we were staying. When checking in with Alison, the Director of Sales, regarding the final details of our meet-up, we once again experience a serendipitous moment…. we learn that one of their own employees also suffered from parathyroid disease and was surgically cured. The front desk receptionist summons the employee so that we can meet her. When she appears from the back office, we can’t help but joke, “Did you catch it from all the people you’ve greeted who stay here?” She laughs, as the irony of it all isn’t lost on her either!

The Courtyard by Marriott Tampa Downtown Hotel is one of the hotels recommended by NPC and has had many out of town patients stay there over the years. For several years she’s been checking in guests at the hotel who were having their surgeries at NPC. Little did she know that eventually her blood work would also reveal high calcium and she would end up at Tampa General getting her own surgery from NPC surgeons! We asked if she reveals to patients checking in that she too has had parathyroid disease and understands their angst. “If someone is really anxious, my co-workers know they can call me up front to speak to the guest to help alleviate their concerns”, she confides.

The front desk is so used to checking in patients that upon arrival you are reminded to not eat or drink after midnight. They are also great at anticipating patients’ needs following surgery. In-room carafes that can be filled with ionized water on tap and ice packs are kept in freezers on each floor. Fruit smoothies are available for purchase at the Bistro to soothe sore throats following surgery as well. There’s also a little sundry store next to the front desk that stocks cold drinks and ice cream. The Bistro also serves light meals for breakfast, lunch and dinner, in case a patient doesn’t feel up to going to a restaurant after surgery. A small full-service bar is available in the lobby for those who are feeling up to a celebratory drink and we met a few over the course of our four night stay who were feeling well enough to do so.

Our Über rides arrived quickly and were very inexpensive!

A complimentary shuttle service operates daily from 7am-11pm and travels within a two mile radius of the hotel, including Tampa General Hospital.  We found Uber to be a very convenient and cost effective way to get to and from the hospital prior to 7:00 am., as well as to and from the Tampa airport,  which is outside the shuttle’s radius.

We were quite surprised by the number of people who were able to attend our meet-up. There were 14 of us in attendance, some coming from as far away as the Orlando area. While several had been cured already, others were getting ready to schedule their surgeries. A few were there to become educated about the disease. One man, originally from Florida, had just returned to Tampa after years of living in the Washington DC area. His wife turned out to be one of our FB followers, and as she was unable to attend our meet-up, she instead sent her husband to ask us questions on her behalf as she suspects she has the disease. She texted him her questions during our gathering and he would in turn, text her our answers! We were happy to provide her real-time answers via her husband.

Perhaps one of the most compelling stories was from a woman who had been cured at NPC. She suspected that her sister also may be affected by the disease, so they started to investigate the possibility. Even though her blood work clearly indicates she has the disease and she has the symptoms, the sister shared that she cannot get her local endocrinologist to refer her for surgery, as the doctor does not believe she has pHPT. She is still in the process of working with her insurance to be allowed to self refer to NPC. We hope she is able to fight this battle and get her cure soon. These two sisters also brought their mother who lives in Colorado and was out visiting. They both suspect that their mom suffers from this disease. She still needs to get her blood work checked, but it does appear that she has many of the symptoms of parathyroid disease. When the two sisters inquire about whether the disease is genetic, the mother laughs as she exclaims, “they always try and blame me for everything! ”

An impromptu guest was Callie, the NPC Office Manager, and former patient from the Norman Parathyroid Center. As we mentioned in our first post, we were surprised to learn on our first day visiting their clinic located in Wesley Chapel that as a teen, Callie was diagnosed with pHPT. Both her grandfather, father and sister had also suffered from the disease.

Here is a short video taken as she shares her story. We hope that Callie will soon share her full story in a podcast that we will host on our website.

Other attendees who had been cured were eager to share their stories with the entire group. Sharing stories is a great way for us to learn from one another and also serves the purposes of helping us make sense of our journeys. While each story is unique, there are indeed common threads – everyone seems to have been ignored by their GP and it takes far too many years for patients to get diagnosed, even when they present with several classic symptoms and high calcium.

Some former patients at the meet-up brought friends along. We are so thankful we get the opportunity to educate these friends as well. We have come to learn that this disease affects many people.  If we each educate our friends, these friends will in turn tell their friends and so on. Together we can create a ripple effect which we hope will result in change…

We will not accept that we are being labeled asymptomatic!

We will not accept that healthy parathyroid glands are being removed in error by inexperienced surgeons far too often!

We will not accept that reported lab values do not necessarily take into consideration a patient’s age and therefore we go undiagnosed for years while our health declines!

We will not accept that endocrinologists tell us we have a mild case and should “wait and see”!

We will not accept mediocrity when there are advanced methods of surgical treatment available.

BECOME INFORMED!