Ask The Expert – Dr. Courtney Balentine

Ask The Expert – Dr. Courtney Balentine

Ask the Expert 2

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Dr. Courtney Balentine is a fellowship-trained endocrine surgeon with a research program dedicated to improving outcomes for patients with endocrine disease, particularly primary hyperparathyroidism. He serves as a Medical Advisor to the Parathyroid Peeps on Inspire. We are pleased to announce that Dr. Balentine will be available from Monday, November 11 to Friday, November 15 to answer your questions about the diagnosis of primary hyperparathyroid disease. 

How to participate: 

  • Join our Parathyroid Peeps community on Inspire
  • Set and review your privacy settings for your new account.
  • Ask your questions in the comment section of the pinned post entitled “Ask the Expert” that will be up beginning Monday, November 11.   
  • Dr. Balentine will post answers to your questions daily. His answers will appear in the comment section as well. 
  • Note: Answers may not immediately follow the question within the thread due to the format.  You may find it helpful to refer to (click on) the “In Reply To: post number” at the top of Dr. Balentine’s replies to view the question being answered. 
  • Our topic for this month is Diagnosis of Primary Hyperparathyroid Disease. Please understand if Dr. Balentine is unable to get to your question due to time or topic constraints. 

More About Dr. Balentine’s Research…

Dr. Balentine’s work focuses on improving processes for diagnosing patients with hyperparathyroidism to facilitate early detection and treatment. His ultimate goal is to ensure that patients with hyperparathyroidism are diagnosed and treated as early as possible without experiencing unnecessary delays. Dr. Balentine is also interested in reducing disparities among older patients with hyperparathyroidism who are even more likely to experience delays in diagnosis and treatment than younger patients. Dr. Balentine works closely with patients and other stakeholders, including the PARAthyroid Peeps, to design and test interventions that address these gaps in care. His research program has been funded by NIH, the Agency for Healthcare Research and Quality, the Department of Veterans Affairs, and numerous surgical societies. Dr. Balentine is proud to provide endocrine surgical care to our Veterans. His clinical practice is based at the North Texas VA Hospital. 

Watch our video interview with Dr. Balentine. 

 

Meet Our Medical Advisors on Inspire

Meet Our Medical Advisors on Inspire

With your continued interest and support our Parathyroid Peeps community is growing!  If you haven’t yet joined our parathyroid community on Inspire, we invite you to do so today.  As a member you can receive support and also help others by sharing your patient experience.

On September 30th through October 4th we will be hosting our first of many “Ask The Expert” events. Instructions will be prominently posted within the community a few days before the event begins explaining how to participate and where to post your questions.

LINKS TO:  

Learn more our support community on Inspire 

Become a member to participate in our “Ask The Expert” Events. 

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We are honored to introduce you to

Dr. Deva Boone and Dr. Courtney Balentine

who serve as Medical Advisors to our Parathyroid Peeps community on Inspire…

 

Screen Shot 2015-04-28 at 12.09.41 AMDr. Deva Boone is one of the busiest parathyroid surgeons in the U.S., performing over 600 parathyroid operations annually.  She is the Medical Director at the Norman Parathyroid Center. 

After obtaining her medical degree from Cornell University, she completed general surgery residency at St. Luke’s Roosevelt Hospital in New York City.  While there, she received several awards for research, and during her final year received the highest award for outstanding contributions to surgical education and research. After residency Dr. Boone received additional fellowship training in endocrine surgery (thyroid and parathyroid surgery) at NorthShore University in Chicago. She joined the Norman Parathyroid Center in 2014. She enjoys surgical missions and has provided surgical care to patients in Nigeria, Myanmar, and the Dominican Republic.

 

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Dr. Courtney Balentine is a fellowship-trained endocrine surgeon with a research program dedicated to improving outcomes for patients with endocrine disease, particularly primary hyperparathyroidism.

Dr. Balentine’s work focuses on improving processes for diagnosing patients with hyperparathyroidism to facilitate early detection and treatment. His ultimate goal is to ensure that patients with hyperparathyroidism are diagnosed and treated as early as possible without experiencing unnecessary delays. Dr. Balentine is also interested in reducing disparities among older patients with hyperparathyroidism who are even more likely to experience delays in diagnosis and treatment than younger patients. He works closely with patients and other stakeholders to design and test interventions that address these gaps in care. His research program has been funded by NIH, the Agency for Healthcare Research and Quality, the Department of Veterans Affairs, and numerous surgical societies. Dr. Balentine is proud to provide endocrine surgical care to our Veterans. His clinical practice is based at the North Texas VA Hospital. 

Educational – “Color Me”

 

profile-pixThe exceptionally talented Mark A. Hicks is sharing his “Color Me” cartoon about hyperparathyroidism with us. Using a medium that is most familiar to him Mark notes, “It’s a lighthearted take on a serious health problem”

The cartoon came about because, while discussing some artwork Mark was doing for a notable parathyroid doctor, the doctor mentioned the general lack of knowledge of parathyroid disease in the medical community. Mark thought that maybe somebody should draw a simple picture that patients could use to help better explain hyperparathyroid disease and its symptoms to doctors. So that’s just what Mark did.

 

Mark hopes the Color Me activity will help raise awareness of the disease and its symptoms among patients and the healthcare community. 

Permission to use and share Color Me image granted by Mark A Hicks 8-13-19 

Mark A. Hicks is an award-winning freelance artist and illustrator who has been creating artwork for children’s books, magazines, greeting cards, and other countless publications for the past 30+ years. Please visit his website at: www.MARKiX.net for a few samples of his artwork and more information about his many projects.

 

Classic symptoms are often treated by specialists who do not necessarily consider primary hyperparathyroid disease as a possible root cause – Avoid the Pitfalls That Delay Diagnosis & Treatment

Classic symptoms are often treated by specialists who do not necessarily consider primary hyperparathyroid disease as a possible root cause – Avoid the Pitfalls That Delay Diagnosis & Treatment

Avoid The Pitfalls That Delay Diagnosis & Treatment of Primary Hyperparathyroid Disease is a series of blogs that shed light on the most common issues patients face that delay diagnosis and surgical treatment.

#5.  Classic symptoms are often treated by specialists who do not necessarily consider primary hyperparathyroid disease as a possible root cause.

Some of the symptoms patients report are more generalized, and can be attributed to any number of health issues. However, there are several classic symptoms associated with primary hyperparathyroid disease.  Medical students are often taught a rhyme to recall the effects of excess blood calcium levels. It goes something like this…

“Moans, Stones, Groans and Bones”

Each word in the short rhyme references common ailments typically associated with primary hyperparathyroid disease…

Moans (gastrointestinal conditions):

  • Constipation
  • Nausea
  • Decreased appetite
  • Abdominal pain
  • Peptic ulcer disease

Stones (kidney-related conditions):

  • Kidney stones
  • Flank pain
  • Frequent urination

Groans (psychological conditions):

  • Confusion
  • Dementia
  • Memory loss
  • Depression

Bones (bone pain and bone-related conditions):

  • Bone aches and pain
  • Fracture
  • Curving of the spine and loss of height

As patients, we may present with some, but not necessarily all, of these symptoms over time. You are invited to read Barbara, Sophie and Joyce’s stories to learn more about the symptoms we suffered from. 

Sadly, specialists who are treating some of the classic symptoms of primary hyperparathyroid disease are not necessarily well-versed in primary hyperparathyroid disease.

One might expect the specialist to have a thorough understanding of a related disease that is known to be a possible root cause of a condition they treat on a daily basis. However, for many of us, this has not been our experience.

No correlations were considered and therefore no attempts were made to discover the root cause – only symptoms were treated. 

Gastroenterologists are the medical professionals who treat the “moans”. They may very easily overlook high calcium as a root cause of certain gastrointestinal issues.  The story of a fellow advocate, and blogger Lora Park’s comes to mind. In her story she highlights the challenging gastrointestinal issues she faced and laments that she suffered for years without a diagnosis …

Did it start in 1980 when i started getting ‘fainty’ if i didn’t eat every 3 hours? Was it in 1987 when i kept going in to the Dr. complaining that everything was making me ill and having them look at me and say i was young and ‘perfect’ and it COULD be just nervous stomach, anxiety… or was it one of the numerous mysterious trips to ER with vomiting and cramping and being told my appendix needed to come out “STAT” only to find out a few minutes later that everything was ‘fine’.

Eventually, it was an astute RN who alerted Lora to the fact that she had an elevated calcium value.

Urologists are the ones to treat patients who are suffering from kidney stones.  Though there are a variety of reasons people get stones, primary hyperparathyroid disease is one root cause.  While we are asked to catch our stones to determine the type, it may end there. It would seem prudent to rule out whether the person has primary hyperparathyroid disease by doing a thorough diagnostic workup.

Psychologists will likely see patients who present with the “groans”.  Patients report having episodes of severe anxiety, depression and/or brain fog. While many of these professionals are now well-versed in understanding the psychological symptoms often associated with thyroid conditions, more education is needed to raise awareness among mental healthcare professionals so they are able to do the same for those potentially suffering from primary hyperparathyroid disease.

General Practitioners, Internists, Rheumatologists, Endocrinologists  treat diseases of the bone. Many PHPT sufferers report being diagnosed with osteoporosis and have shared with us that they were put on bone drugs for osteoporosis without having gone through a thorough diagnostic process. Or if they did, the physician did not necessarily understand the various biochemical presentations of primary hyperparathyroid disease and the diagnosis was overlooked. Sandi, a fellow patient advocate who suffered from osteoporosis for years shares her story  in this 28 minute video and expert parathyroid surgeon Dr. Boone, an expert in parathyroid disease, summarizes some of the hurdles in this 6.5 minute video. 

Others have reported that they were encouraged to take bone drugs after diagnosis as part of a “wait and see” model of care. This happened in Sophie’s case and it made no sense to her to take a medication that would not address the root cause. After doing her own research, she declined and self-referred to a parathyroid surgical center. Bone drugs will not help improve the bone health of a person if there is an underlying condition of primary hyperparathyroid disease.

Dentists may also see rapid changes/deterioration in dental health in patients who have  primary hyperparathyroid . Patients would benefit from dentists being familiar with the various symptoms (deterioration of bones and teeth specifically) and biochemical presentations.  Dentists could then suggest that these patients follow-up with their personal physician to determine if primary hyperparathyroid disease is possibly the underlying cause.

A glaring group of conditions treated by Cardiologists that is not addressed in the memorable rhyme, are those that effect the heart and blood vessels,  including high blood pressure (hypertension), hardening of the arteries (atherosclerosis), coronary artery disease, an enlarging heart (left ventricular hypertrophy), and abnormalities in the normal electrical activity of the heart. Learn more here. 

A patient may report having a fluttering, racing heart and /or it is discovered that they have high blood pressure. When the doctor cannot find anything else particularly wrong with the patient, they may put the patient on blood pressure medications. Yet elevated calcium values may not be considered and/or ignored if mildly elevated.  Once diagnosed, patients have realized that their blood calcium were elevated during that time and found that their heart stopped fluttering/racing and blood pressure returned to normal following surgical removal of the diseased parathyroid gland(s).

imageConclusion: We understand it is not at all unusual for patients suffering from primary hyperparathyroid disease to go undiagnosed for many years. Parathyroid experts believe the average patients goes undiagnosed at least 8 years, if not longer.  Remember that it is the length of time that calcium values are elevated outside of normal range which wreaks havoc in our bodies, rather than the degree to which calcium is elevated. Thus, the condition should not be referred to as “mild” if serum  blood calcium is slightly elevated.  A “wait and see” approach is actually very harmful to our health. Of course, we cannot attribute the delays in diagnosis entirely to the specialists treating our symptoms. Remember that in our first blog in this series, we discussed that labs often do not report calcium values based on a persons age.  However, an excellent understanding of primary hyperparathyroid disease by healthcare professionals across all specializations who treat related symptoms and conditions, would help drastically reduce the delays in diagnosis we experience as patients. 

RESOURCES FOR YOU: 

Hypercalcemica Calculator: Here is a link to the Norman Parathyroid Center’s hypercalcemia calculator to find the upper limit of blood calcium for your age. Note that when you enter your age in the calculator that your upper limit will appear in the paragraph below in both mg/dl (USA) or mmil/L in most other countries. See the example image below for someone who is 50 years of age. Screen Shot 2019-05-21 at 4.02.43 PM.png

A new way to help us remember the symptoms of Primary Hyperparathyroid Disease : See our High Calcium Is Bad  symptom list.

Help Advocate – Raise Awareness – Provide & Receive Support: Learn more about our Parathyroid Peeps Community on Inspire through this link.  PLEASE JOIN US ON  INSPIRE

If you missed the previous blogs in the series, Avoid The Pitfalls That Delay Diagnosis & Treatment of Primary Hyperparathyroid Disease, here are links to catch up: 

#1. Your doctor reports your serum blood calcium is in “normal” range . What could be the problem? 

#2. Slightly elevated calcium values are ignored. 

#3. A doctor does not want to confirm a diagnosis of primary hyperparathyroid disease or refer for surgery until the adenoma is visible on a scan .

#4. A patient may be incorrectly diagnosed as having secondary hyperparathyroidism when they instead have primary hyperparathyroid disease that requires surgical treatment

Please remember that we are not medical professionals. Read our Terms of Use/Disclaimer. 

A patient may be incorrectly diagnosed as having secondary hyperparathyroidism when they instead have primary hyperparathyroid disease that requires surgical treatment – Avoid The Pitfalls That Delay Diagnosis & Treatment

A patient may be incorrectly diagnosed as having secondary hyperparathyroidism when they instead have primary hyperparathyroid disease that requires surgical treatment – Avoid The Pitfalls That Delay Diagnosis & Treatment

Avoid The Pitfalls That Delay Diagnosis & Treatment of Primary Hyperparathyroid Disease is a series of blogs that shed light on the most common issues patients face that delay diagnosis and surgical treatment.

#4  A patient may be incorrectly diagnosed as having secondary hyperparathyroidism when they instead have primary hyperparathyroid disease that requires surgical treatment.

Primary hyperparathyroid disease means the hyperactivity of one or more parathyroid glands is caused by the gland(s) becoming a non-cancerous adenoma. Secondary hyperparathyroidism means that a disease or issue outside of the parathyroid glands is causing the glands to become enlarged and hyperactive.

Here are some of the reasons why a person might experience secondary hyperparathyroidism:

Kidney failure requiring dialysis (GFR less than 25) 

According to American Association of Endocrine Surgeons Patient Education Site:

It is usually caused by kidney failure, a problem where the kidney is unable to clean the blood of phosphorus produced by the body and unable to make enough vitamin D (specifically calcitriol, the active form of vitamin D). The build-up of phosphorous leads to low levels of calcium in the blood, which in turn stimulates the parathyroid glands to increase parathyroid hormone (PTH) production, which in turn causes them to grow. As the disease progresses, the parathyroid glands no longer respond normally to calcium and Vitamin D.

Malabsorption Syndromes when the intestines do not absorb vitamins and minerals properly or as a result of malnutrition. This can occur as a result of:

  • Gastric Stapling
  • Gastric (stomach) bypass
  • Intestinal bypass
  • Roux-n-Y Bypass
  • Celiac Disease
  • Crohn’s Disease

Severe Vitamin D deficiency is another reason 

It is often presumed that a patient’s low Vitamin D is the reason their calcium values are high. The patient is then given the diagnosis of having secondary hyperparathyroidism and given a protocol for Vitamin D supplementation. Patients report this as a common hurdle faced when trying to get a correct diagnosis. Supplementing with Vitamin D only made their symptoms worse and further delayed surgical treatment.

While severe Vitamin D deficiency can indeed be a secondary cause, we have learned that there is a flaw in many people’s understanding of the relationship of blood calcium values to inactive Vitamin D  (Vitamin D 25-OH ) which is most commonly being measured.

A patient will actually have low inactive Vitamin D BECAUSE the calcium is high when presenting with primary hyperparathyroid disease. In a recent blog hosted on our website, Dr. Deva Boone, an expert in parathyroid disease, discussed the role of Vitamin D in relation to primary hyperparathyroid disease in great detail.

Click here to read the informative article to learn more about the conversion process of Vitamin D 25-OH inactive to Vitamin D 1,25-OH2 active, and why inactive Vitamin D is so often low when a person is suffering from primary hyperparathyroid disease.

Resource link: Norman Parathyroid Center – secondary hyperparathyroidism.

Sadly, this misunderstanding often causes delays in diagnosis even when a patient has a classic biochemical presentation –  high blood calcium, high parathyroid hormone levels and low inactive Vitamin D – which should make it exceptionally easy to make a proper diagnosis.  

Were you told that you had secondary hyperparathyroidism when in fact it was primary? Please join us in our community on Inspire to share your story.  

If you missed the previous blogs in the series Avoid The Pitfalls That Delay Diagnosis & Treatment of Primary Hyperparathyroid Disease here are the links to catch up…

#1. Your doctor reports your serum blood calcium is in “normal” range . What could be the problem? 

#2. Slightly elevated calcium values are ignored. 

#3. A doctor does not want to confirm a diagnosis of primary hyperparathyroid disease or refer for surgery until the adenoma is visible on a scan .

Please remember that we are not medical professionals. Read our Terms of Use/Disclaimer. 

A doctor does not want to confirm a  diagnosis of primary hyperparathyroid disease or refer for surgery until the adenoma is visible on a scan – Avoid The Pitfalls That Delay Diagnosis & Treatment

A doctor does not want to confirm a diagnosis of primary hyperparathyroid disease or refer for surgery until the adenoma is visible on a scan – Avoid The Pitfalls That Delay Diagnosis & Treatment

Avoiding Pitfalls That Delay Diagnosis & Treatment of Primary Hyperparathyroid Disease is a series of blogs that we will posting in order to shed light on the most common issues patients face that delay diagnosis and surgical treatment.

#3 A doctor does not want to confirm the diagnosis or refer for surgery until the adenoma is visible on a scan. 

We often hear patients say that their physicians do not want to confirm the diagnosis until the adenoma is seen on a scan. However primary hyperparathyroidism is diagnosed biochemically through blood work.

A scan should not be necessary to confirm the diagnosis.

Learn more here:  The American Association of Endocrine Surgeons Guidelines for Definitive Management of Primary Hyperparathyroidism – October 2016

In other instances, patients report that the physician will confirm the diagnosis, but will not refer for surgery until a positive scan confirms the location of an adenoma.

Why is such an emphasis placed on a positive scan?

Surgeons who perform focused exploratory surgeries directed by preoperative localizing studies will want and need a scan to know exactly where they will find the adenoma(s), as the surgery is being directed by the localizing study.  GP’s and/or Endocrinologists understand this, so they may be reluctant to refer a patient for surgery until they are able to provide the surgeon with the information they believe is needed to move forward with surgery.

If a surgeon plans to perform a bilateral exploratory surgery, a scan may not be required. During a bilateral exploratory surgery, the surgeon plans to search for and assess all four glands. Every patient should be made aware that the amount of time spent exploring in the neck impacts how much scar tissue results. It requires an expert to locate these small glands, that are each the size of a grain of rice, without excessive exploring. 

Why is this important? Expert surgeons (those who perform a minimum of 50 parathyroidectomies a year) should have a high surgical success rate. Do not be shy about asking a surgeon the number of parathyroid surgeries they perform and their success rates. Unfortunately,  not all first surgeries are a success.  Should a second surgery becomes necessary, excessive scar tissue may prevent having a subsequent successful surgery. As a result of the scar tissue, a positive scan is almost always required for a re-operation if attempted. 

There are surgeons who are able to perform a 4-gland check without using the typical or traditional bilateral exploratory techniques. In our cases, a four-gland check was performed in approximately 20 minutes without the need to explore. A sestamibi scan was performed on the day of surgery only for the purpose of confirming that the adenoma(s) were not located in more unusual places, such as the chest or jaw. This generally confirms that the adenoma(s) and healthy glands, that will also be checked during the surgery, are located right behind the thyroid gland where they should be.

Parathyroid surgery is surgeon specific.  As always, it is important to advocate for yourself… ask questions to fully understand the surgical plan and the level of expertise of the surgeon.

Learn more about the various types of localizing studies on the American Association of Endocrine Surgeons Patient Education Site: http://endocrinediseases.org/parathyroid/diagnosis_localization.shtml

If you missed the previous blogs in the series Avoiding Pitfalls That Delay Diagnosis & Treatment of Primary Hyperparathyroid Disease here are the links to catch up…

#1. Your doctor reports your serum blood calcium is in “normal” range . What could be the problem? 

#2. Slightly elevated calcium values are ignored. 

Slightly elevated calcium values are ignored… Avoid The Pitfalls of Delayed Diagnosis & Treatment of Primary Hyperparathyroid Disease

Slightly elevated calcium values are ignored… Avoid The Pitfalls of Delayed Diagnosis & Treatment of Primary Hyperparathyroid Disease

Avoiding Pitfalls That Delay Diagnosis & Treatment is a series of blogs that we are posting to shed light on the most common issues patients face that delay diagnosis and surgical treatment of primary hyperparathyroid disease.

#2  The lab report your doctor is reviewing provides the correct range for your specific age, as normal ranges are dependent upon a person’s age. Your doctor casually mentions that your calcium values are just slightly elevated or at the upper limit of normal for your age but there is no need to be concerned. The doctor might even suggest that you cut back your consumption of calcium rich foods to see if that helps lower your calcium value. The doctor says they will make a note in your chart to keep an eye on it the next time you have lab work done.

Slightly elevated calcium should not be ignored. High serum blood calcium values are not caused by calcium rich foods! 

Based on reported patient experiences and our own, many doctors do not realize what mildly elevated calcium values mean and make light of it, if it is mentioned at all. In the meantime, it is often these elevated calcium values, that have been labeled as “mild” that are wreaking havoc on the patient’s health and causing some of the very symptoms the person is seeking help for.

Many of us have come to learn that we must advocate for ourselves. The first step is to become educated by always asking for a copy of our lab results. Any number above or below a range should be questioned. In the case of primary parathyroid disease, in order to advocate for ourselves we need to know what the upper limit of normal calcium is for our age. In our last blog post we discussed the primary reason why it is necessary to know the upper limit of serum calcium for our age. Knowing the upper limit for our blood calcium based on our age is so critical to making a proper diagnosis, that it merits repeating again.

Here is a link to a Hypercalcemia Calculator to discover your upper limit based on your age.

Mildly elevated calcium do as much damage to our bodies as higher values.  According to surgeons at the Norman Parathyroid Center who have gathered the largest databank of information based on treating thousands of cases per year….

Hypercalcemia complications develop over time. Thus the severity of hypercalcemia is related to how long you have calcium levels that are high, not how high it has become. A calcium of 10.5 is just as dangerous as a calcium of 11.5. Even “mild” hypercalcemia will lead to many other health problems if left untreated. It is the duration of hypercalcemia that matters, not the height of the calcium!  

If calcium values are above the upper limit for your age, then it would be wise to consider requesting a parathyroid hormone (PTH) test. Primary hyperparathyroid disease is diagnosed biochemically, through blood work. It is the relationship between serum blood calcium, PTH and Vitamin D from the same blood draw that enables a proper diagnosis.

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