Tests to Consider if You Have ME

A while ago, I did a post on tests to consider if you have POTS. Although there is some overlap between POTS and ME, there are unique tests of exclusion and comorbidities of ME that are worth mentioning. Many of the tests I discuss look for evidence of other conditions that cause severe fatigue. Since that and many symptoms of ME are nonspecific, testing to rule other diseases out is important.

Most of these tests are taken from what Mayo Clinic tested me for as part of their Chronic Fatigue and Fibromyalgia clinic. A few other tests were things I had done along the way that I thought were valuable to rule out other diseases.

You absolutely do NOT need all of these tests. However, if you do not have access to a specialist that has been thorough with you, this can be a good resource to check over with your family doctor. Doctors have the knowledge to understand why certain tests are indicated and they can explain to you which, if any, of these tests may be of value to you.

The value of tests is so you know what beast you are fighting. It would be very frustrating to think you had ME for years, but really have condition X that is more treatable. Another scenario is you have ME and condition X. Improving condition X typically makes life with ME better.

Overnight Oximetry

Your doctor can order a test where you take home an oximeter and sleep with it on to determine if you have sleep apnea. There are many other complex sleeping disorders and this is just a basic test that would show periods of apnea. Your doctor can also refer you to a sleep clinic where they do a full sleep study.

If you aren’t sleeping well, nothing will be right. Sleep is one of the most impactful things on your health. Sleep disorders can obviously cause severe fatigue, but the laundry list of other symptoms they cause is unreal. If you suspect something, I would encourage you to speak up to your doctor.

Antinuclear Antibodies

This test checks for the presence of autoantibodies. The pattern of the autoantibodies is also observed. The pattern can help distinguish between a few different autoimmune diseases. It is not uncommon for someone to have an autoimmune disease on top of ME, so it’s worth a look.

Cyclic Citrullinated Peptide IGG

This tests for the antibodies present in Rheumatoid Arthritis. RA can cause severe pain and fatigue.

Rheumatoid Factor

A positive rheumatoid factor indicates Rheumatoid Arthritis.

Sedimentation Rate

Sed rate is a nonspecific test for inflammation in your body. It serves as a red flag that something is going on.

Glucose

High glucose levels indicate diabetes.

Tissue Transglutaminase IgA

A positive test indicates Celiac Disease. Celiac Disease causes a lot of GI issues and fatigue.

Celiac Disease Serology Cascade

This test is also for Celiac Disease.

Protein Electrophoresis Serum

This test measures the levels of certain proteins in the blood. Several diseases can be indicated by an abnormal result.

Vitamin D

This is an extremely common deficiency in our modern world and especially in the northern hemisphere. Vitamin D can exacerbate fatigue and pain. It can also affect bone health.

Cortisol

This test checks to see if your cortisol levels are in a normal range. An abnormal result would indicate an adrenal gland disease.

CK

The CK blood test is for the muscle enzyme creatine kinase. There are several muscle disorders or conditions that can be indicated by this test.

Thyroid Panel

This test checks the function of your thyroid gland. Too low of a number can mean hyperthyroidism and too high of a number indicates hypothyroidism. A family member has Hashimoto’s Thyroiditis meaning their immune system attacks their thyroid gland so that it does not produce enough hormones on its own. They have had it for years before being diagnosed. It was missed through cascade testing (where they only do TSH first), so they are a big advocate of having a full thyroid panel done including testing for Hashimoto’s if thyroid issues are suspected.

CRP

The C-Reactive Protein blood test can indicate several things such as: lupus, infection, a chronic inflammatory disease, heart disease, and rheumatoid arthritis.

ALT, AST, and Comprehensive Metabolic Panel

These tests are for liver function.

BUN

BUN tests for the amount of urea nitrogen in the blood. This can indicate issues with the kidneys or liver.

Creatinine Serum

Creatinine serum estimates how effective your kidneys are at filtering (which is their job). An abnormal test would indicate improper kidney function.

Electrolytes

Potassium, sodium, and magnesium deficiencies can all contribute to severe symptoms or the exacerbation of symptoms from another disease.

CBC

CBC tests for several things. It can indicate anemia, infection, certain types of cancer, etc. Abnormalities in this test can be a red flag for a doctor to know to dig deeper.

Calcium

Abnormal calcium levels can indicate certain bone diseases like Paget’s or issues with the parathyroid gland.

MRI/CT

This could rule out other neurological diseases including multiple sclerosis, tumors, Chiari malformation, etc.

Tilt Table

It is estimated that anywhere between 11-70% (depending on the study) of people with ME have POTS. Either way you look at it, it is significant. The tilt table tests for POTS and some other forms of dysautonomia. A full autonomic screening test as they do at Mayo can help distinguish between the types of dysautonomia in a more thorough way.

Infectious Diseases

Certain infectious diseases can cause long-term issues, become reactivated, or come on insidiously. Your doctor can determine which ones are worth checking for.

For example, I was tested for Cytomegalovirus, HHV-6, Epstein-Barr, Parvovirus B19, and Mycoplasma Pneumoniae. I didn’t have any active infections, but had “high levels of viral load” from past infections. Doctors disagree about what that means. The functional medicine doctor said that is significant to the course of disease. The western medicine doctors told me that means nothing. Ultimately, I did not respond well to antiviral or antibiotic protocols, but everyone is different.

It is clear that previous infections can contribute to diseases such as ME. However, it is debated whether it is the pathogens themselves or the wreckage to the nervous system they leave behind that is responsible for the etiology of these complex diseases.

Lyme Disease Western Blot

Lyme disease is far more common than one would guess. The CDC receives reports that about 30,000 people contract it in the US each year. However, the CDC also says that based on other studies that figure is probably closer to 300,000. The standard ELISA screening test misses around 50% of people with Lyme disease. The western blot is still not very accurate (about 80%), but it is better. If you live in a Lyme-heavy area, consider looking into Lyme.

Vitamin Panel

Vitamin deficiencies can mimic many other diseases as well as exacerbate existing conditions.

Lead and other Heavy Metals

In our modern world, this is becoming a more common issue. Every annual checkup for a child includes a lead screening, which demonstrates that it is a legitimate concern. If you think you are at risk for heavy metal exposure at your work or home, it would be wise to ask your doctor about it. There is controversy of whether blood or urine is the best way to test for heavy metals.

Hormones

Examples are follicle stimulating hormone, luteinizing hormone, prolactin, estrogen, progesterone, testosterone etc. If someone is “off” in one of these hormones, it can throw off many things in their body. I’ve heard of people experiencing significant improvement after treating low testosterone.

Pregnancy

Just kidding. Chances are, if you are a woman, you have already been checked for this 9,823,049,283 times. I don’t blame them, though. Pregnancy does some seriously disturbing things to a body.

Cardiac Tests

Examples would be an EKG, Transthoracic Echo, stress test, holter monitor, etc. Heart conditions like arrhythmias can mimic or exacerbate many symptoms of ME.

Whew, that was a lot of tests. I want to stress this again, you do NOT need all of these tests. Many can be ruled out by your clinical presentation. And do not be disheartened if you do not have a specialist. You can accomplish a lot with a family doctor that is willing to work with you. If you have any questions about these tests, send me an email at dropitlikeitspotsblog@gmail.com.

How was your experience being diagnosed with ME or another chronic illness? Have you discovered that you have another condition as well?

Disclaimer: I am not a medical professional. Statements on this site are not meant to be taken as medical advice. These statements reflect my personal experiences having mild-ish post-viral POTS and ME. Due to the wide spectrum of these diseases, comorbidities, and everyone being different, your experiences may be very different than mine.

Note: If you post a comment, this site does NOT have a feature to notify you of responses to your comment. I have not found a good solution for that yet. However, I usually respond to every comment in a timely manner, so be sure to check back.