In this article:
- What is chronic fatigue syndrome?
- What are the signs and symptoms of chronic fatigue syndrome?
- How is chronic fatigue syndrome diagnosed?
- How is chronic fatigue syndrome treated?
- Chronic fatigue syndrome, the S.H.I.N.E. Protocol, and hypothyroidism
- The CFS-hypothyroidism connection
- Continuing fatigue with hypothyroidism
- A note from Paloma
Most people who have an under-active thyroid gland – hypothyroidism – experience some degree of fatigue as a symptom. Hypothyroidism-related fatigue can range from feeling a bit more tired than usual, to needing a daily nap to make it until dinner time, to sleeping 10 or more hours per night and still feeling a debilitating level of exhaustion.
The good news is that in most cases, optimal hypothyroidism treatment will usually resolve most fatigue, or at least get substantially improve your energy level. But what about situations where your fatigue is so pervasive, and so consistently present that it interferes with daily life, or even leaves you debilitated much of the time? Is that still a hypothyroidism symptom, or could it be a condition known as chronic fatigue syndrome, or CFS?
While they are viewed as two separate conditions, there’s increasing evidence that hypothyroidism and CFS have many similar symptoms, and in some cases, are interrelated. In this article, we’ll look at CFS, and how it’s diagnosed and treated, as well as the important connection to hypothyroidism.
What is chronic fatigue syndrome?
Chronic fatigue syndrome (CFS) is a condition that is primarily known for its eponymous symptom: fatigue. It’s also known as myalgic encephalomyelitis (ME), and more recently, there’s a movement to call the condition systemic exertional intolerance disease, or SEID. In CFS, the fatigue tends to be overwhelming, and is not relieved by sleep or rest. The exhaustion of CFS can be debilitating, and the most severe cases of CFS can leave patients bedridden, and unable to work or perform many essential functions. The fatigue in CFS tends to get worse with physical or mental exertion.
CFS can develop very quickly, or symptoms can appear slowly over time. In some cases, an episode or flare-up may last for a few weeks or months. In some people, the condition is chronic and unrelenting, and lasts for years. It's estimated that around 1 million people in the U.S. have CFS, but the majority are currently undiagnosed.
The cause of CFS is elusive and not well understood. Still, there are some known triggers and risk factors.
- Women are around four times more likely to develop CFS versus men.
- CFS is frequently diagnosed after a viral infection, including upper respiratory infections, human herpes virus 6 (HHV-6), mononucleosis (Epstein-Barr Virus), and more recently, COVID-19.
- CFS appears to have some links to immune system and hormonal imbalances -- including problems with thyroid function -- but the specific relationship is still unknown. But various studies have shown some irregularities in the pituitary, adrenal, and thyroid hormone levels of people with CFS.
What are the signs and symptoms of chronic fatigue syndrome?
The symptoms of CFS are not particularly unique. Many of them are, in fact, also symptoms of hypothyroidism, or common infections like the flu, or COVID-19. Generally, the symptoms include:
- Fatigue: severe and unexplained fatigue that does not improve with rest is considered the most common symptom of CFS.
- Post-exertional malaise (PEM): a worsening of fatigue after physical activity or mental exertion
- Muscle weakness
- Muscle and joint pain
- Tender or enlarged lymph nodes in the neck or armpits
- Sore throat
- Visual problems: blurred vision, sensitivity to light
- Cognitive impairment: difficulties with memory, focus, and concentration
- Insomnia, sleep problems
- Low-grade fever
- Low body temperature
- Chills and night sweats
- Depression and mood swings
- Allergies and sensitivities to foods, scents, chemicals, medications, and supplements
- Numbness, tingling, and burning sensations in the hands, feet, and face
- Orthostatic problems: dizziness, especially dizziness that worsens when you change position, i.e., when you move between lying down, sitting, and standing. The dizziness can also be accompanied by feeling faint or nauseated.
How is chronic fatigue syndrome diagnosed?
There’s no blood test or scan to diagnose CFS, and doctors typically rely on a detailed medical history to make a diagnosis. Specifically, diagnosis typically requires that a patient meet three criteria:
1. Other conditions causing severe fatigue have already been ruled out
2. The fatigue is severe and chronic, and has lasted at least 6 months
3. Four or more of the symptoms of CFS are present.
How is chronic fatigue syndrome treated?
There is no FDA-approved treatment for CFS, because the condition remains poorly understood. Instead, conventional medical treatment tends to focus on resolving symptoms with antidepressants, drugs for orthostatic intolerance, over-the-counter and prescription medications for pain and inflammation, and medications to regulate blood pressure or heart rhythms. In addition, exercise programs and psychological support are also frequently recommended.
Chronic fatigue syndrome, the S.H.I.N.E. Protocol, and hypothyroidism
Because there is no specific treatment for CFS, some practitioners have developed detailed multi-disciplinary protocols that combine medications, vitamins, supplements, and lifestyle interventions. One of the nation’s leading CFS experts is integrative physician, Jacob Teitelbaum, MD, who has created the S.H.I.N.E. protocol for CFS and post-viral syndromes. S.H.I.N.E. stands for:
- Sleep: Aggressive sleep support, to ensure more than 7 hours a night of quality sleep
- Hormone support: Support for even mildly imbalanced hormones, including thyroid, adrenal, and sex hormones (estrogen, progesterone, testosterone)
- Immune dysfunction and infections: Identifying and treating underlying bacterial and viral infections
- Nutrition: Optimizing nutrition, especially nutrients that help maintain energy, such as B-12, glutathione, and B vitamins, among others
- Exercise: A slow increase in gentle physical activity, without overexertion
Research on Dr. Teitelbaum’s S.H.I.N.E. protocol has shown that over 90% of patients improve using the full protocol, with around 75% of patients reporting an improvement in quality of life after 12 weeks.
Dr. Teitelbaum considers it an essential part of the S.H.I.N.E. protocol to evaluate for hypothyroidism, not just with blood tests, but with a clinical assessment of symptoms. According to Dr. Teitelbaum, treatment for borderline, subclinical, or overt hypothyroidism is an important part of the success of his S.H.I.N.E. protocol for CFS.
The CFS-hypothyroidism connection
Dr. Teitelbaum believes that an underlying hypothalamic-pituitary dysfunction – potentially caused by viral damage -- could be common to many cases of both CFS and hypothyroidism. His conclusion that CFS and hypothyroidism are connected is borne out by a number of studies that have shown various links between underlying infections common to both CFS patients, and patients with subclinical or overt hypothyroidism. For example, several studies have found higher-than-normal incidence of human herpesvirus 6 (HHV-6) infection and Epstein Barr Virus (EBV) in both CFS and patients with Hashimoto’s thyroiditis, the autoimmune disease that causes hypothyroidism.
One of the most groundbreaking studies was released in 2018. Titled “Higher Prevalence of “ Low T3 Syndrome” in Patients With Chronic Fatigue Syndrome: A Case–Control Study, the study was published in the journal Frontiers in Endocrinology. The researchers reported that CFS, like hypothyroidism, is characterized by low levels of most – but not all – thyroid hormones.
Researchers found that most CFS patients had low or low-normal levels of the two key thyroid hormones -- triiodothyronine (T3) and thyroxine (T4). A significant number of the CFS patients also had levels of free T3 – the active and available thyroid hormone that helps oxygen and energy reach cells – that were below the reference range. The CFS patients also tended to have lower iodine levels and higher Reverse T3 levels. Surprisingly, despite all these markers for hypothyroidism, the CFS patients had normal levels of thyroid stimulating hormone (TSH). This meant that conventional guidelines would exclude a diagnosis of hypothyroidism.
Instead, according to the researchers, “the low T3 levels found in CFS patients coupled with this switchover to Reverse T3 could mean that T3 levels are severely reduced in tissue.” To that end, the study authors concluded that CFS could be characterized as a “nonthyroidal illness syndrome (NTIS)” or “low T3 syndrome.”
According to the researchers, while more studies are needed to confirm their findings, trials of treatment with T3 medication and iodine supplements might be indicated in CFS patients.
Interestingly, the researchers also found that the metabolic profile of the CFS patients closely resembled those of hypothyroid patients on levothyroxine (T4) treatment who had persistent and unresolved symptoms, including fatigue. This led the researchers to conclude that T3 treatment may be effective not only in CFS patients, but also in hypothyroid patients with continued symptoms on levothyroxine.
Continuing fatigue with hypothyroidism
If your doctor has ruled out a diagnosis of CFS, but you are still struggling with hypothyroidism-related fatigue, here are a few steps to help resolve unrelieved exhaustion.
- Make sure your hypothyroidism treatment is optimized. It’s often not enough to have “normal” thyroid levels. Optimizing treatment may help resolve persistent symptoms like fatigue. For more information on optimizing your hypothyroidism care, read the Paloma article “Why Do I Still Have Hypothyroid Symptoms With Normal Labs?”
- Make sure you are taking your thyroid medication consistently and regularly. A good place to review the basics is the Paloma article, How and When to Take Your Thyroid Medication.
- Get enough sleep. Many of us are “short sleeping,” getting less than 7 hours per night of quality sleep. Often, persistent fatigue can be resolved by doing everything possible to at least 7 hours of sleep. (Getting 8 or 9 hours consistently is even better!) For more information, read Paloma’s Simple Guide for Healthy Sleep.
- Consider consulting with your physician about the possible benefit of having a sleep study. People with an underactive thyroid gland are at higher risk of a condition known as sleep apnea, where you periodically stop breathing while asleep. In fact, hypothyroidism almost doubles your risk of having sleep apnea! When untreated, apnea can leave you with significant daytime exhaustion.
- Cut down on carbohydrates and sugar in your diet. Research shows that a diet high in carbohydrates and sugary foods is linked to a higher risk of persistent fatigue.
A note from Paloma
If you have CFS, make sure that you’ve had a complete thyroid panel to test for hypothyroidism. One convenient way to get your thyroid tested is with the Paloma Complete Thyroid Blood Test kit. The affordable and convenient at-home thyroid test kit from Paloma comes with everything you need, to test Thyroid Stimulating Hormone (TSH), Free Thyroxine (Free T4), Free Triiodothyronine (Free T3), and Thyroid Peroxidase Antibodies (TPO), with an option to add on tests for Reverse T3 (RT3) and vitamin D.
If the practitioner providing your CFS treatment is not doing a comprehensive evaluation of your thyroid, consider adding a practitioner to your team who has expertise in hypothyroidism diagnosis and treatment. You can get high-quality hypothyroidism care from Paloma’s top thyroid doctors, who provide comprehensive diagnosis and optimal treatment of hypothyroidism from the convenience of your home. Paloma’s network of thyroid-savvy health care providers across the nation have successfully worked with many hypothyroid patients to resolve persistent fatigue and other symptoms.
If you have hypothyroidism and meet the diagnostic criteria for CFS, you should work with practitioner who has extensive experience and a track record of successfully working with CFS patients. At the same time, a key priority should be optimization of your thyroid treatment, with emphasis on ensuring that you have optimal Free T3 levels, which appears to be an important link to resolving fatigue. Again, Paloma’s highly qualified thyroid doctors are a ready resource to partner with you for optimal hypothyroidism care.