Q: What tests do I need to do to be evaluated for my CFS/FMS?
A: Although there is no test that is needed to diagnose CFS/FMS, there are many tests that can be helpful in determining what treatments you need. Beyond this, there are tens of thousands of dollars worth of tests that can be done that will be abnormal and quite interesting yet totally useless in helping you to get well. As my focus is on effective treatment, I’ll only be discussing the more common tests that will affect my initial treatment recommendations. My book discusses many other tests that, although helpful, are only used in selected patients. It also discusses which diagnoses and symptoms to use for each test so that your insurance is most likely to cover it. If your physician will not order the tests for you, you can get a lab requisition form for these tests on my web site at a www.endfatigue.com.
Tests that I recommend as part of the initial evaluation in all CFS/FMS patients:
- Complete blood count (CBC). This common and inexpensive test gives us a wealth of information. If the WBC (White blood cell count) is high (over 9000) it leaves me more suspicious of an antibiotic sensitive infection. If it is low with a high lymphocyte count, especially if atypical lymphocytes are present, this is more suggestive of a viral infection. An elevated eosinophil count suggests allergies or parasite infections. The tests also look for anemia and evidence of iron, folate, or B12 deficiencies. It also screens for blood cell cancers and can give evidence of many other problems.
- Sedimentation rate (ESR)-this test is only considered significant medically if it is elevated (i.e. — over 20). It screens for inflammation. In most people with CFS/ FMS it actually is lower than normal. If it is modestly elevated I look for inflammatory processes more aggressively and will routinely use low-dose Cortef treatment. If it is over 50 in a patient who is over 50 years old, that patient needs to be evaluated for polymyalgia rheumatica, a very treatable inflammatory condition which mimics FMS but is a very different process.
- A general chemistry — although there are many panels it should include at least a blood sugar (glucose), BUN and creatinine (checks for kidney function and dehydration), SGOT and SGPT (also called alt and ast), bilirubin and alkaline phosphatase (to check for liver and bone diseases), albumin (protein), calcium, magnesium, sodium, potassium, and uric acid levels.
- Iron, TIBC (total iron binding capacity), percent saturation and ferritin levels. These tests check for iron deficiency and excess. Both of these are critical to detect. If the iron is high, it is very easy to treat (donate blood) but can cripple and kill you if it is missed. Iron deficiency will often be present even if the blood tests are technically normal. This is because the blood test’s normal range is based on preventing anemia from severe iron deficiency. More moderate levels of iron deficiency, however, can cause fatigue, brain fog, cold intolerance, restless leg syndrome, immune dysfunction, and infertility. Because of this, I usually recommend treating with iron if the percent saturation is less than 22 percent OR the ferritin level is less than 40. I recheck each four months until the blood tests come above these levels.
- Vitamin B12 level. Although normal is anything under 209, evidence suggests that significant B12 deficiency occurs at much higher levels even in healthy people. Other evidence suggests that very high levels may be needed to maintain optimum health in CFS/FMS patients. I recommend that anybody with a level under 540 be treated with B12 shots. A good argument can be made for treating everybody with CFS/FMS with B12 shots regardless of the blood level.
- Thyroid testing. Many doctors will only check a TSH blood test to evaluate thyroid function. Unfortunately, this test is very unreliable in the presence of hypothalamic dysfunction. If the TSH is over three, it strongly suggests that you should be treated with thyroid hormone. I would also check a free T4 level. This checks the level of the active hormone. The interpretation of other T4 hormone tests is difficult because protein binding is altered in CFS. In the experience of many physicians, and this has been supported now by several studies, thyroid blood tests will miss the large majority of people who need thyroid hormone therapy. If you have symptoms of low thyroid (to be discussed in a future newsletter) you should be treated with thyroid hormone regardless of the blood test results.
- A cortisol and DHEA-sulfate (DHEA -S) level. These should be drawn before 9 AM and before eating or drinking anything besides water that morning. If the cortisol is under 14 mcg/dl or if the patient has symptoms of a low adrenal, I would treat with very low-dose Cortef (usually 5-15 milligrams daily which is about equal to 1- 3 mg prednisone). If the DHEA- S is less than 120 mcg/DL in a female or 350 mcg/DL in a male I will usually treat with DHEA. Do not use the DHEA in the presence of hormone sensitive cancers (e.g. breast, ovarian and prostate) unless approved by your physician.
- A urinalysis — this screens for infections, bleeding, diabetes, and dehydration.
These tests are the most important tests to be done in any patient with CFS/FMS. Many other tests can also be helpful but are less critical.
Dr. Teitelbaum is a board certified internist and director of the Annapolis Research Center for Effective CFS/Fibromyalgia Therapies, where he sees CFS/Fibromyalgia/Chronic pain patients from all over the world (410-266-6958). Having suffered with and overcome these illnesses in 1975, he spent the next 28 years creating, researching, and teaching about effective therapies. He is the author of the best-selling From Fatigued to Fantastic!” and the newly released “Three Steps to Happiness! Healing through Joy”. His web site can be found at: www.vitality101.com