Advocating for Improvement in Diagnosis

IMG_2176We know that often the first major obstacle for patients who have primary hyperparathyroid disease face is getting an accurate diagnosis in a timely manner.

Why is it so difficult for patients to get diagnosed? While we have identified several reasons which we outline in our Action Plan, we intend to make one of them a topic of conversation at our Advocacy Workshop being held during the 2nd Annual Parathyroid Peeps  Retreat, November 3-6, 2016 at Miraval Resort and Spa.  A major obstacle is that …

The reference ranges for normal serum blood calcium values vary from lab to lab. Many do not take into consideration the age of the patient when reporting values.

The result is that a calcium value of, let’s say, 10.5 mg/dL may be reported as being in the “normal range” for a mature adult age 30+ . While this value is normal for a teen or young adult it is NOT normal for an adult 30+. Therein lies the problem!

According to the Norman Parathyroid Center… 

Diagnosing a person with hyperparathyroidism who is 18 years old is very different from diagnosing a person who is 65 years old. A normal, healthy teenage will have blood calcium levels that are above 10.0, and most of the time these healthy normal teenagers have calcium levels between 10.0 and 10.7 mg/dl. A patient who is 60 years old, however, should have calcium levels “in the 9’s”. A calcium level of 10.5 is normal in a person who is 21 years old, but signals the presence of a parathyroid tumor in an adult over 40 years old.

To further illustrate this on their website, the Norman Parathyroid Center provides a graph that charts normal calcium values for patients of various ages. Do you see how the normal ranges vary based on age, with values peaking in the teen years?

NPC Calcium Chart You can learn more about the problem here.

Mayo Clinic provides the following ranges for males and females by age… 

Males
1-14 years: 9.6-10.6 mg/dL
15-16 years: 9.5-10.5 mg/dL
17-18 years: 9.5-10.4 mg/dL
19-21 years: 9.3-10.3 mg/dL
> or =22 years: 8.9-10.1 mg/dL

Reference values have not been established for patients who are <12 months of age.

Females
1-11 years: 9.6-10.6 mg/dL
12-14 years: 9.5-10.4 mg/dL
15-18 years: 9.1-10.3 mg/dL
> or =19 years: 8.9-10.1 mg/dL

Reference values have not been established for patients who are <12 months of age. Learn more here.

The FDA’s Investigations Operations manual indicates…

The normal range for serum blood calcium is 9 – ll mg/dL.  See the chart here (scroll to 6th page in the pdf document).

Wow! The FDA’s range is alarming.

 The National Institute of Health site states …

Normal values range from 8.5 to 10.2 mg/dL. Normal value ranges may vary slightly among different laboratories. Some laboratories use different measurements or may test different specimens. Talk to your doctor about the meaning of your specific test results. Learn more here.

They all indicate that normal value ranges may vary among different laboratories as we have discovered as well.

Serum blood calcium is tested as part of the Comprehensive Metabolic Panel, generally ordered during a routine physical. Elevated serum blood calcium values are often the first biochemical clue that the parathyroid glands are not functioning properly. Calcium must always remain in a very tight range within normal. Therefore elevated values are often ignored because they are not clearly stated as being outside the normal range for the patient’s age on a lab report.

Patients are not aware of the problem, nor are many of their doctors. We can’t tell you how many times we have heard our followers say that they were completely unaware that for many years their calcium levels were elevated yet their doctor never mentioned it to them.

As a result of high calcium values not being flagged on patients lab reports, doctors are not alarmed and therefore do not proceed in ordering the next test to measure parathyroid hormone levels (PTH), which would help make a diagnosis.

“Whenever serum blood calcium is elevated, parathyroid hormone levels should be checked at the same time. It is their relationship to one another that is key in making an accurate diagnosis.”

A solution:  A possible solution would be for the medical professionals and laboratories to first agree on normal ranges for serum blood calcium so that they would be consistent from lab to lab. We would like to see those normal ranges then regularly reported in relation to patients’ ages. The highest normal values for serum blood calcium for a mature adult would not exceed 10.1 mg/dL.

Additionally, we believe patients would be better served, given the prevalence of primary hyperparathyroid disease (estimated at 1 in 50 women over the age of 50 by experts) if the panel, that is currently available for parathyroid disease but generally not listed on lab slips,  were more visible to create greater awareness. Calcium should always be evaluated with parathyroid hormones levels (PTH) as it is their relationship to one another that enables medical professionals to make a proper diagnosis.

How can you help?   In order to better understand the extent of the problem, we would like to enlist your help to identify labs that do not adjust their ranges for a patients’ age and/or who have values over 10.1 listed as “normal” for an adult over age 30.

What will we do? We will organize the information you provide. Our plan is to then discuss the information collected at the 2nd Annual Parathyroid Peeps retreat and strategize advocacy efforts to address this problem.

Instructions For Submitting Information:   If you would like to help, please provide the requested information below. Note that we are NOT asking for you to provide your lab values – that is irrelevant information for this project. Simply provide any and all normal reference ranges for serum blood calcium that the laboratory provided on the report you received. If you are not requesting copies of your reports you can and should do this to become your own health advocate. (As a side note: Dr. Boone is also offering a practical session on “How to Become Your Own Advocate At YOUR Next Doctor Appointment” at our Parathyroid Peeps Retreat and requesting copies of ALL lab reports is an important first step! )

Of course, if you have had lab work done at more than one lab, and they had different ranges, please provide the requested information for each lab.

You can use the Contact Form below to submit the information requested or you may post the information under comments on the related thread on Facebook.  It will save us a tremendous amount of time if you are able to help us gather this information. Thank you !

Include:

  • Your Name:
  • Name of the Laboratory
  • Normal Ranges for Serum Blood Calcium stated on the lab report you received
  • List any Normal Ranges you can find on-line from the same lab that may differ from what is stated on your lab report. Please include a link to the website

NOTE: When filling out the form it may appear as though the data your entered in a previous field “disappears”, however it is still there. Only the data being entered into the field at the moment is visible to the user however if you return to the field it is there. We are successfully receiving the information!  Don’t forget to click “SUBMIT”! If you do experience difficulties you can always e-mail the requested information to us at parathyroidpeeps@gmail.com if you prefer.

 

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s