Graves’ disease: explained
Graves’ disease is an autoimmune disorder that affects approximately 1 in 200 people in the United States. The disorder results in an overactive thyroid, affects women more than men, and usually presents between the ages of 30 through 50. I was diagnosed with Graves’ in my late thirties. One of the first things I learned about this disorder was the number of universal delusions about what the condition might be like. Many of my peers stated they would love to be hyperthyroid, just for a while, to take off that last ten pounds!
However, Graves’ disease can be dangerous, and the initial presentation is often uncomfortable. People who suffer from Graves’ disease may be diagnosed after another autoimmune disorder, as these diseases may arrive in groups, or as part of a genetic trend. Conditions that could be linked with Graves’ disease include Lupus, rheumatoid arthritis, pernicious anemia, Addison’s disease, celiac disease, vitiligo, or type 1 diabetes. My condition was diagnosed following treatment for endometriosis, so I was not prepared for an additional endocrine problem.3
Olympic athletes have been diagnosed with Graves’ disease during training or events. Initially they may miss symptoms of tachycardia or an irregular heartbeat, believing it to be the result of stress. They may feel the same way about symptoms of fatigue and muscle weakness, or the weight loss that occurs as the thyroid gland produces more hormone to drive the body’s systems even faster. With Graves’ disease, the immune system produces an antibody called TSI (thyroid-stimulating immunoglobulin). TSI tells the thyroid gland to produce more thyroid hormone than the body requires. If left unchecked, an individual with Graves’ disease will begin to suffer heat intolerance as well as periods of shakiness and hand tremors.
The individual may also suffer from sleeplessness or feel hungry and irritable. The thyroid, if palpated, will feel enlarged and boggy, and may be visibly enlarged to a trained eye. Diarrhea or frequent, looser bowel movements may occur. The hands may feel tingly and dropping things could become habitual. As a side note, the skin may feel very velvety, like silk.
One third of those with Graves’ disease may develop a classic symptom, called Graves’ ophthalmopathy or GO (Graves’ orbitopathy), described as a severe protrusion of the eyes. This rare eye condition can cause double vision, light sensitivity, and eye pain, and could lead to vision loss. The eye condition, once it occurs is not reversible, although a surgery called orbital decompression may provide some relief. Treatment of dry, painful eyes can be offered by prescription therapy, although improvement may also occur once the disease has been treated. Unfortunately, painful dry eyes may also occur later in life even for those who have been treated but drops and ointments are available to bring relief.4
A rare skin condition affects a small percentage of people with Graves’ disease. This condition causes thickened, reddened skin around the shins, and is called Graves’ dermopathy.2
Seeking treatment for Graves’ disease is usually initiated by the patient once their symptoms become uncomfortable and/or interfere with daily activities. Mine was the inability to sleep, and the constant eating, eating, eating! Working in the ICU was difficult because you can’t carry a sandwich to the bedside, and my hands would start to tremble well before noon. Most perplexing was the numbness to my wrists and hands during the night. I had lost over 15 lbs. within one month, and my throat felt a bit “thick”. Consequently, I began to worry about a neuromuscular condition.
A trip to the primary physician determined I had an elevated resting heart rate:150 bpm and an enlarged thyroid on palpation. The next test ordered was a thyroid panel and an imaging scan. While elevated thyroid levels (T3, T4) in the blood or a depressed thyroid stimulating hormone (TSH) may be excellent clues for Graves’ disease, a radioactive iodine uptake test will be more definitive. This exam uses small amounts of radioactive iodine to determine how much is collected by the thyroid gland. The thyroid collects iodine from the bloodstream and uses it to make thyroid hormone; if it collects an unusually large amount, you may have Graves’ disease.3
By performing a thyroid scan, the gland is visualized to determined where iodine has been collected. With Graves’ disease, iodine is evenly distributed throughout the entire gland. With alternate causes of hyperthyroidism, such as nodules or tumors, the iodine will be distributed in a different pattern, and lumps can be detected.
Once a diagnosis of Graves’ disease has been made, medication is usually initiated to bring the heartrate to a more stable level, while treatment options are discussed. Beta-blockers will typically be prescribed, which lowers the risk for cardiovascular events as the thyroid gland drives the metabolism more rapidly than needed.
Because Graves’ disease affects women up ~ eight times more than men, and occurs during years childbearing could ensue, Graves’ disease in pregnancy requires special treatment with collaboration between the Obstetrician, the Endocrinologist, and the patient.1 Symptoms may be worse during the first trimester of pregnancy and improve during later months. Generally, an anti-thyroid drug such as PTU (propylthiouracil) is safe in pregnancy, but radioiodine cannot be given. Untreated Graves’ disease in pregnancy could lead to stroke, heart failure, low birth weights, or possible thyroid storm (a life-threatening complication where the thyroid gland produces an overwhelming amount of hormone, causing the heart rate, temperature, and blood pressure to soar). Without immediate treatment, thyroid storm can be fatal.4
Treatment options for non-pregnant females and male patients diagnosed with Graves’ disease include the following: ingestion of radioactive iodine therapy, anti-thyroid medication, and thyroidectomy.
Taking radioactive iodine may worsen symptoms of ophthalmopathy, so it may not be recommended for those who already have eye symptoms. Additionally, it takes time for the thyroid gland to absorb the radioactive iodine, and it may take a while for symptoms to decline. There are precautions about the physical closeness of pets and family members to the patient (after the initial ingestion of the radioactive iodine), so mothers of young children and toddlers may choose to avoid this treatment. As previously mentioned, iodine therapy is absolutely contraindicated during pregnancy.
Anti-thyroid medications, such as methimazole (Tapazole) and PTU (propylthiouracil) can also be prescribed, but they carry a risk of side effects. When these drugs are used alone, a relapse of hyperthyroidism may occur later. Methimazole is more commonly prescribed, but PTU can be used during pregnancy. Side effects of these drugs may include joint pain, rashes, a decrease in WBC’s, or in rare cases, liver failure (PTU).1
Thyroidectomy may also be considered as a treatment for Graves’ disease, but as with any surgical procedure, this also carries risk, such as potential damage to the vocal cords, or to the parathyroid glands, which control the amount of calcium in the bloodstream. Complications are rare with an experienced surgeon, but the patient may be started on beta-blockers or anti-thyroid medication prior to surgery to decrease risk of thyroid storm. Calcium will be ordered to be kept at the bedside postoperatively for supplementation if serum calcium levels drop below 7.2mg/dl.2
As with any treatment option, the patient’s PMD and Endocrinologist will discuss which option is the best plan for each individual case.
Graves’ disease, unfortunately, does not end with treating an overactive thyroid gland. Once the thyroid gland has stopped or decreased producing hormone, supplemental thyroid hormones will need to be replaced exogenously and monitored for the remainder of the patient’s life. Additionally, counseling for weight management and eating a healthy diet will need to be initiated.
Imagine having an autoimmune disease where you feel continually hungry and irritable, spending nights sleepless and edgy, eating snacks that don’t seem to satisfy. When diagnosed and treated, the patient will soon be at the opposite end of the spectrum, feeling fatigued, puffy, sluggish and bereft of energy. They may gain weight on smaller amounts of food, as the thyroid gland stalls and stutters and begins to slow or cease production of hormone.
Only when your thyroid has slowed or come to a complete halt will your physician feel assured to begin slowly replacing thyroid hormone. It’s during this time when patients need support and empathy to begin to feel more like themselves. This is the body they will need to become reacquainted with and learn to nourish.
Having Graves’ disease felt like drinking espresso after espresso without being able to find an “off” switch.
Being treated and developing hypothyroidism was like taking a roller coaster to the opposite end…the dead zone. Just wake me when it’s over, possibly with a 2 X 4.
Becoming euthyroid is one of life’s blessings, absolutely.
For one small, butterfly-shaped gland located in the front of the neck, it’s amazing what a powerhouse of control the thyroid can be!3
- Healthline.com “What is Graves’ disease?” Dock, E. and Solan, M., January 4, 2016.
- Mayoclinic.org “Graves’ disease” Mayo clinic staff, January 7, 2020.
- Niddk.nih.gov “Graves’ disease” National Institutes of Health, USA.gov 1-800-860-8747
- Womenshealth.gov “Graves’ disease” US Dept. of Health and Human Services