Guest post from Zana Carver, PhD
I know you’re exhausted and feel miserable but what’s worse is not having a diagnosis or the right treatment. How long have you been suffering before you were finally diagnosed? Have the treatments prescribed by your doctor helped? Perhaps you have been wondering why there is so much confusion around chronic fatigue syndrome (CFS). Not only are doctors unclear about precisely what causes CFS or the best treatments, but the general public is even more confused. Worst of all, your illness is invisible to others. They may think it’s all in your head or that you are manipulative or lazy. Well, read on to see the light at the end of the tunnel.
Chronic Fatigue Syndrome
Chronic fatigue syndrome, also known as myalgic encephalomyelitis (ME), is a complex, and debilitating illness (1). The symptoms of ME/CFS include:
- Extreme fatigue that is not improved with rest
- Worsening of this debilitating fatigue with any exertion (physical or mental)
- Brain fog (difficulty concentrating, remembering, or reasoning)
- Trouble with sleep; poor quality sleep
*Many people who have chronic fatigue syndrome also have fibromyalgia.
Chronic fatigue syndrome is more common in the 40 to 60 year age range (1). Frighteningly, about 90% of ME/CFS sufferers have not been diagnosed, and the actual number of cases is not known. However, the CDC estimates that 836,000 to 2.5 million Americans are affected (1).
ME/CFS is diagnosed through a combination of medical history and exclusion of other possible conditions through an extensive series of tests (2, 3). These tests may include visits to specialists such as neurologists and rheumatologists (2, 3). No one knows what causes chronic fatigue and there is no cure (3, 4). There is no approved treatment for ME/CFS, but commonly, the treatments are aimed at reducing symptoms (4). This symptom management may include pain medications, counseling, nutritional/dietary modifications, activity modifications, and alternative therapies (4).
Now let’s take a look at a problem with a striking similarity in symptoms, hypothyroidism. The thyroid gland (located in the neck) produces thyroid hormones to control the rest of the body (5). Thyroid hormones act to increase metabolism, the burning of calories to create heat and energy. Normal thyroid hormone levels are required for every tissue and every system within the body. When thyroid hormone levels are low, the condition is called hypothyroidism and causes the following symptoms (5) – get a full list of hypothyroid symptoms here.
- Cold intolerance/abnormally cold
- Weakness & dizziness
- Muscle and joint pain
- Excessive need for sleep but poor quality sleep
- Impaired immune function
- Inability to handle stress
- Anxiety & depression
- Mood swings
- Brain fog (difficulty remembering, concentrating, and problem solving)
- Weight gain
- Blood sugar imbalances
- Menstrual problems & infertility
- Impaired nutrient absorption
- High or low blood pressure
- High cholesterol
- Low heart rate
At this point, I know you see how similar the list of symptoms is between hypothyroidism and chronic fatigue syndrome. However, your doctor tested your thyroid and said its fine, right?
Problems with Diagnosis
Doctors are trained to use only the thyroid stimulating hormone (TSH) test to screen for thyroid problems (6, 7). TSH is produced by the pituitary gland and only indirectly indicates thyroid status, despite being referred to as the “gold standard” of thyroid diagnosis (7). However, there are a whole host of conditions that when present mean that the TSH test is inadequate to determine thyroid status (8, 9). Dr. Kent Holtorf has written extensively about this problem and the bigger issue of the lack of awareness from physicians (6). According to some sources approximately 60% of hypothyroidism is undiagnosed because of this diagnostic misinterpretation. What’s worse is that even if someone is diagnosed with hypothyroidism, they are often given an ineffective medication and never actually feel well again (10)!
What this Could Mean for Treatment
Being correctly diagnosed and treated could make a world of difference for ME/CFS sufferers. Let me explain that I’ve had my thyroid removed about 14 years ago due to cancer and have been on thyroid hormone replacement since then. A few years ago, I had an endocrinologist lower my dose of thyroid medication four times over the course of 6 months. During this time I went from a healthy and active person to someone who was completely disabled and could barely get out of bed (11). I was exhausted, weak, dizzy, freezing cold, and my muscles and joints were on fire.
Getting my life back required finding a new doctor, a different type and dose of thyroid medication, and then over time taking steps to heal the damage that low levels of thyroid hormone caused. When thyroid hormone levels are low, this can decrease levels of adrenal (stress hormones) and sex hormones leading to a whole host of confusing symptoms (12). Please take the time to find an excellent doctor for ME/CFS who will order a full panel of hormone tests (13) and offer a variety of effective treatments (14). It just may change your life too!
1. CDC Staff. “What is ME/CFS?” CDC.
2. CDC Staff. “Diagnosis of ME/CFS.” CDC.
3. NASEM Health. “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness.” National Academy of Sciences Engineering Medicine
4. CDC Staff. “Treatment of ME/CFS.” CDC.
5. Braverman and Cooper. “Werner & Ingbar’s The Thyroid, A Fundamental and Clinical Text, 10thed.” Philadelphia, Wolters Kluwer/Lippincott Williams & Wilkins.
6. Kent Holtorf, MD. “Why Doesn’t My Endocrinologist Know All of This?” National Academy of Hypothyroidism.
7. Kent Holtorf, MD. “How Accurate is TSH Testing?” National Academy of Hypothyroidism.
8. Kent Holtorf, MD. “Thyroid Hormone Transport.” National Academy of Hypothyroidism.
9. Kent Holtorf, MD. “Deiodinases.” National Academy of Hypothyroidism.
10. Rachel Hill. “Liothyronine is Under Attack From The NHS Again.” Invisible Hypothyroidism.
11. Zana Carver, PhD. “Introduction.” Thyroid Code.
12. Rachel Hill. “Thyroid and Adrenal Fatigue; Why It’s More Than ‘Just Being Tired’.” Invisible Hypothyroidism.
13. NAH Staff. “Why Your Doctor Won’t Run a Full Thyroid Panel.” National Academy of Hypothyroidism.
14. NAH Staff. “What Thyroid Medication is Best for You?” National Academy of Hypothyroidism.
Zana Carver, PhD
Dr. Zana (Adams) Carver is an Assistant Professor of Biology at Columbia Basin College who has been teaching Human Anatomy and Physiology since 2010. Dr. Carver has received an Exceptional Faculty Award from Columbia Basin College in 2018 for her work on an upcoming thyroid book. Most importantly, Zana Carver is a thyroid cancer survivor who is passionate about using her experience and education to help others. Through perseverance and finding the right physician she is thriving on thyroid hormone replacement instead of just surviving.