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Ellen S

Errors at Quest Diagnostics - was your lab report a mistake?

The nation's largest lab has admitted errors in its Vitamin D testing over the last two years. This is important to Migraineurs and chronic pain patients because those with either condition tend to be lower in vitamin D than 'normal'. Doctors think lowered vitamin D status could be making us more prone to pain issues.

Unfortunately, the specific vitamin D test to which the company admits wrongdoing was not mentioned in the article. There are multiple tests for vitamin D including 1,25(OH)D and 25(OH)D also called 25-hydroxyvitamin D. Most physicians consider the latter to be the correct test. In this particular case, the test results were reported as 'inaccurate' but the company did not comment if they ran high or low. Falsely elevated levels would leave countless hundreds or thousands believing they are in good health, while the reality is terribly different. Falsely low levels could result in an equally great number of patients supplementing themselves into a toxic situation.

Ranges for this test are somewhat fluid, there continues to be disagreement on what is the best level to maintain. Most doctors know there is a difference between 'normal' and 'optimal' and will take the patient's overall health status and history into consideration when looking at their lab values. Generally speaking, staying above 30 is bare-bones (pun intended) necessary for basic health, and above 50 is best. Levels above 100 are considered in excess and dangerous/toxic.

Although many labs have the ability to do this test, not all labs are FDA approved for it Diasorin is generally considered the 'best' facility, using the best type of 25-hydroxyvitamin D test called an RIA. In fact Diasorin is the lab of choice, and RIA 25-hydroxyvitamin D the test of choice used during research studies on Vitamin D status.

Because of the different types of testing for 25-hydroxyvitamin D (RIA, LC-MS/MS, Liaison) and all have variable abilities to detect 25-hydroxyvitamin D, it makes sense to use the lab and test from whence the 'normal ranges' originated. It's at least important that you find out if your lab has performed the appropriate recalibrations against DiaSorin’s assays.

Amazingly enough, Vitamin D3 is actually a steroid hormone, and like other hormones in your body, what may be good for you may not be good for another person. This is why hormones are best looked at while taking all things into consideration, not just a lab value. A good doctor will either know how to do this already, or will be eager to learn. There is a difference between normal and optimal, and although you may fall within normal ranges, this may not be optimal for your body.

As you ponder the NYT article, please consider these questions:

* How do I know if I was tested for Vitamin D?
* How do I know my exact results?
* Why is it important for me to know this information?
* How can I find out if my test was accurate?
* How do I know that all my other tests have been done appropriately?
* What do I do now?

For the answers to some of these questions, click here - Medical mistakes - making the case for personal record keeping

The rest I will try to tackle in another post. For this moment I'm trying to maintain a professional attitude while dealing with the personal side of this story.

Stay tuned for more details...

Sources: Diasorin, New York Times, Linus Pauling Institute - Oregon State University, Mercola.com

Tags: advocacy, chronic pain, headache, living with it, migraine, mistakes, quest, vitamin d

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Ellen S Comment by Ellen S on February 20, 2009 at 7:58am
MJ- That is so cool! Thank you for adding this. Maybe letting go of this mountain of paperwork will eventually be a thing of the past for us after-all. I do so hate paper....
MaxJerz Comment by MaxJerz on February 19, 2009 at 7:45pm
Hi Ellen, MedicAlert makes a jump drive like what you're talking about, called an E-Health Key. Teri Robert wrote a review of it here: Review: The MedicAlert E-HealthKEY

You can find the E-Health Key in their PDF catalog on page 10.

Be well,
MJ
Ellen S Comment by Ellen S on February 19, 2009 at 10:20am
Hi Jack, I do keep all my personal records, and those of my family. You can read about my Personal Health Control Journal (PHCJ) and how it can be used by people with chronic conditions, as I take readers step by step through creating one of their own. It is an ongoing project.

My family has unfortunately been down the road of lab errors before. I posted about one experience here.

We haven't used an online service however, and I'm not sure that we will. It's true, changes come over time, especially for me. :) I have safety and privacy in mind more than anything else at present. Additionally, my doctors don't have computers in each exam room, nor the time to go online to see the information and request paper copies. This is not always the case however, and I can see that they could be very valuable.

Several people I know are using jump drives to carry their medical info. These drives may be attached to key rings, purses, etc and are portable. In an emergency situation they are probably more likely to be accessed than anything online... so far. What I have not seen is a jump drive that is designed for this purpose, perhaps red, with EMERGENCY emblazoned across it in white, or white with a MEDICAL imprint.

Do you keep your health records online? Have you tried any of these services and do you see any pros or cons that users might want to keep in mind while considering their use?
Jack Barrette Comment by Jack Barrette on February 19, 2009 at 9:05am
Ellen, it's a great safeguard to keep a personal health record - do you see Microsoft's HealthVault and Google Health as helpful in this situation? Have you tried them, or have other migraineurs used Personal Health Records online?

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