Why informed patients use SALIVA cortisol testing rather than blood
In 2002, when the Stop the Thyroid Madness movement began (even before it had that name), patients were discovering that there were a large body who had a cortisol problem, mostly low cortisol.
Why is it problematic to have low cortisol??
Because without enough cortisol, thyroid hormones don’t do a good job getting to our cells, whether thyroid hormones made from our thyroid, or from thyroid meds. If on thyroid meds and we try to raise them in the presence of a cortisol problem, we have problems, usually as result of excess adrenaline or rising levels of the inactive hormone RT3.
Even having too high cortisol can be a problem. Besides the insomnia it created in many of us at bedtime, or frequent wake-ups right after we did fall asleep, we also saw how high cortisol pushed our Reverse T3 (RT3) higher and higher, which will also make us more hypothyroid. RT3 is an inactive thyroid hormone.
WHY DID WISE PATIENTS START USING SALIVA CORTISOL TESTING INSTEAD OF BLOOD?
At first in the early groups Janie had started, patients were using blood because our doctors prescribed it (and sadly, still do).
But we quickly heard about saliva testing. Saliva not only tests our “available-for-use, cellular, unbound” cortisol, but at four key times. Blood does neither! Blood is measuring a combination of both bound and unbound cortisol, of which 80% or more can be bound and unusable! And blood testing, which is usually done once, doesn’t tell us what is going on the rest of the day.
Additionally, when in the early years patients were using both saliva and blood, some saw themselves with HIGH or good blood cortisol at a particular time, whereas the saliva showed LOW. And our symptoms FIT the low. That was insightful. So we quickly learned to say no to blood, and only use saliva cortisol testing.
You can order your own saliva test, and My Med Lab has been quite popular as well as Direct Labs: //stopthethyroidmadness.com/recommended-labwork (Note that a handful of US states won’t allow you to order it. It would mean having it arrive at a friend or family member’s house in an allowable state, then having them send it to you. Other countries are listed, too, on this page)
WHAT ABOUT URINE TESTING??
The most common urine test that doctors try to prescribe is a 24 hour urine test. But all it does is give an “average” and tells us nothing about what is going in at four key times, which is crucial. Granted, it can be useful to diagnose Addison’s or Cushings disease. But most of us as thyroid patients with a cortisol issue have neither of those. We simply have a cortisol problem based on the stress we encountered from being undiagnosed for so long, or being put on Synthroid or Levo–the latter T4-only meds which, because they are inadequate, stress our adrenals.
HERE’S THE PROCESS WITH USING SALIVA TESTING FOR CORTISOL
- To prepare, drink lots of fluids the day before! Helps provide enough saliva the day of the spit.
- The day to do it is a normal, relaxing day.
- This is general, but you will spit into provided vials that will be sent to you. When??
a) first thing in the morning after awaking (and before eating),
b) around 11 am – 1 pm (before eating lunch),
c) around 4-5 pm (before eating supper–they will call this “evening” but it’s late afternoon), then
d) at bedtime, i.e.when your body is clearly telling you it’s time to go to bed (before brushing teeth). It’s important to stick to those times. Some will provide a vial for DHEA, but it’s not required.
4. What if you have weird hours than other people? Whatever time you normally wake up is your “first thing in the morning”, even if it’s late morning. Then approximately 4 hours later is “your noon”. Approximately 4-5 hours later is your “late afternoon” (which they call evening), etc.
5. How much in each vial? Most places recommend 3/4 full, but some are 1/2 full. It can take up to 30 minutes.
6. If mouth is dry, some report sniffing things like a cut lemon or whatever might promote salivating. Do NOT chew gum or anything else to promote saliva. It will contaminate the sample.
7. For women, it may be important to wait until after a period and before mid-cycle. Why? Rising progesterone can affect cortisol to some degree in some people. If your periods are weird, don’t worry about when.
8. Avoiding exercise on the day of saliva may be important to prevent false cortisol levels.
9. We also try to be off supplementation or meds which can affect cortisol, and be off “up to” two weeks…if possible. Why? We are trying to see what our cortisol levels are naturally and without influence, and treat that. BUT…some people need what they are on, such as anti-depressants etc. Perhaps talk to your doctor to see if you can be off for a few days?
10. If sick, might want to wait until you are well. Sickness can affect cortisol levels.
11.Talk to your doctor if you have any additional questions. Your kit will also have instructions.
ABOUT THE VIALS, PLUS HOW TO SEND THEM BACK–important
Once you spit, we recommend immediately freezing them, one by one. Then you send the next day, or very soon. Why freezing?? Because we want them to arrive as fresh as possible, even if the company claims they are fine without doing this. We have noted weird results from not doing this for some people, as if hot weather degrades the saliva, or the time it takes to arrive degrades, or the facility doesn’t get to them quick enough. Granted, you may be fine if you don’t, but you may not. So why take the risk….
Additionally, we find it important to do OVERNIGHT SHIPPING with the frozen vials! Fresh, fresh! Janie puts her frozen vials in a baggy, then wraps the baggy in paper towels and foil. But any method you use to keep them colder, longer will work.
ABOUT FACILITIES THAT USE THE LESS THAN/MORE THAN RESULTS RATHER THAN RANGES
Avoid!! They don’t understand that it’s about “where” we fall that has meaning, not about “falling anywhere” below or above a number. My Med Lab uses ZRT which happily has all ranges. Sadly, Quest has a less-than range for bedtime. So does an Ulta saliva test. With Cell Science, too many people have gotten weird results that don’t match their symptoms.
ONCE I GET MY RESULTS BACK, HOW DO I UNDERSTAND THEM?
First know that the facility will NOT interpret your results correctly, we have noted for years and years. They will imply that you are “normal” if you fall anywhere in their defined perimeters. But there is a huge difference between “like other people they tested” vs where “optimal” is as compared to people who have NO cortisol problem. Instead, use the following page to understand where you really should fall i.e. as compared to where people fall who do NOT have a cortisol problem: //www.stopthethyroidmadness.com/lab-values You may have to teach this to your doctor.
HOW DO I TREAT A CORTISOL PROBLEM REVEALED BY MY SALIVA TEST?
Most people, if there is a problem (not a disease), report seeing results like this after studying the Lab Values page:
- low, low, high, high
- low, low, low, high (either moderately low or very low)
- low, low, low, low (not like Addison’s, but low enough)
- low, high, low, high…or the opposite, as high, low, high, low). These are healthy but stressed adrenals.
- high, high, low, low (less common, but possible)
You can read more information based on patient experiences and wisdom here: //www.stopthethyroidmadness.com/adrenal-wisdom
Note: though rare, please talk to your doctor if your results show 1) extremely low results at all four times, often below range, or 2) extremely high results at all four times. The first can indicate Addison’s Disease, and the second might be Cushing’s Disease. Granted, super high results at all four times can be also from using too much progesterone. But just in case, ask your doctor to test for either.
WHY DO I HAVE A CORTISOL PROBLEM IN THE FIRST PLACE??
For the majority, it happens as mentioned above at the beginning: due to being undiagnosed hypothyroid (whether never getting it tested, or a doctor who goes by the lousy TSH lab test), or put on Synthroid or Levothyroxine, which is only one of five thyroid hormones and ends up causing problems. i.e. either situation can cause your adrenals to kick in to keep you going with more and more cortisol, and over time, the high cortisol is forced down, but too low. Please read the last chapter in the STTM II book–it does a bang-up job explaining how it all happens!
There are also some folks who get a cortisol problem just from going through excess and chronic stress in their lives. Examples could include dealing with chronic bad relationships, family stress, illnesses of loved ones, prolonged grief, crime, etc. Janie has also noted that men who over-train in the gym can get a cortisol problem, which in turn causes “secondary” hypothyroidism.
(Please note this is copyrighted information for Stop the Thyroid Madness only)
WANT TO READ MORE??
- Here’s a page on ways to discern if you have an adrenal problem via self-testing
- Symptoms of low cortisol (though you still need to do saliva testing to see what problems are where)
- Seven stages of Adrenal Fatigue
- The problem with the TSH lab test in diagnosing hypothyroidism or treating it
- Why T4-only meds like Synthroid or Levothyroxine can be a problem
- A study showing that saliva stays good in cold; not so much in warm.