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All About Graves' Disease

Symptoms, Causes, Diagnosis, and Treatments

From thyroid storms to bulging eyes, it’s no wonder that a diagnosis of Graves’ disease can seem a bit frightening at first. Despite the spooky-sounding name, Graves’ is actually very treatable and manageable, especially when caught early. We’re here to empower you with clear answers to all your pressing Qs.

In This Article: 
Definition Causes | Symptoms | Diagnosis | Treatments | Complications | Fast Facts | Frequently Asked Questions | Support 

Featured Voices: Trevor Angell MD, Lindsay Bischoff MD, and Caroline Messer MD

What is Graves' disease?

Graves' is a cluster of symptoms caused by the butterfly-shaped thyroid gland in your lower neck, and it affects 3 percent of people in the US. Your thyroid gland makes hormones that help your body regulate a wide range of vital functions, including:

  • Growth and development
  • Body temperature
  • Heart rate
  • Weight
  • Fertility
  • Mental health
  • Sleep

If you’re diagnosed with Graves' disease, it means that your thyroid is making more thyroid hormone than your body needs, and it most often leads to a condition called hyperthyroidism, which causes your metabolism to speed up. It usually arises in mid-adulthood, but it can occur at any age. "A lot of people get scared when they first hear the name," says Caroline Messer MD, an endocrinologist at Lenox Hill Hospital in New York City. But don’t worry, it's not referring to six feet under. It's actually Graves', not grave, after the last name of the doctor who discovered it.

Graves' disease basics

What causes Graves' disease?

In Graves’ disease, your immune system creates antibodies that cause your thyroid to grow and produce an excess of thyroid hormone. These antibodies are called thyroid-stimulating immunoglobulins (TSIs). The TSIs bind to your thyroid cell receptors, which are typically “docking stations” for thyroid-stimulating hormone (TSH). Invading TSIs then trick your thyroid into growing and releasing too much thyroid hormone, leading to hyperthyroidism.

Will Graves' disease affect my immune system?

Grave's disease is an autoimmune issue, as it involves your immune system attacking healthy tissue. Like many autoimmune conditions, Graves’ is also 7-8 times more likely to occur in women than men, for reasons that are still unknown.

The inheritance pattern for Graves’ is still being investigated, as many genetic and environmental factors appear to be involved. Researchers don’t completely understand what causes autoimmunity, although there seems to be a genetic connection, as cases of Graves’ tend to run in families. So, if you have a close relative with Graves' disease or who has another autoimmune disorder, it’s likely to increase your own risk of developing Graves’, although how much is still unclear.

What are the signs and symptoms of Graves' disease?

Early signs of Graves’ disease vary from person to person and they are often confused with other conditions, which can delay diagnosis. “Before diagnosis, patients often notice that they can't tolerate heat, are unintentionally losing weight, and are having heart palpitations,” says Trevor Angell MD, Assistant Professor of Medicine and Associate Director of the Thyroid Center at the Keck School of Medicine at the University of Southern California. Common early symptoms include:

  • Weight loss despite increased appetite. (Unfortunately, some doctors may erroneously suspect an eating disorder, even if you tell them that the weight loss is unintentional.)
  • Anxiety, irritability, and mood swings
  • Restlessness
  • Tremors (involuntary, quick movements, such as twitching)
  • Difficulty sleeping and disturbed sleep (insomnia)
  • Heat intolerance and sweating
  • Chest pain, palpitations, and rapid or irregular heartbeats
  • Shortness of breath and difficulty breathing
  • Increased stool frequency (with or without diarrhea)
  • Irregular or stopped periods
  • Muscle weakness
  • Difficulty controlling diabetes
  • Fatigue
  • Reduced libido or erectile dysfunction
  • Vitamin b12 deficiency

What are the complications of Graves' disease as it develops?

If you even suspect you may have Graves’ disease, getting treatment ASAP is crucial. “While Graves’ may not seem like a serious issue at first, it can often become one later, and it definitely needs immediate medical attention either way,” says Lindsay Bischoff MD, Medical Director of the Vanderbilt Thyroid Center and Assistant Professor of Diabetes, Endocrinology, and Metabolism at Vanderbilt University Medical Center. If Graves’ disease is left untreated, complications that often occur as it progresses include:

  • Goiter: goiter is an enlarged thyroid gland that has grown big enough to appear as a visible bulge on your neck. One that’s specifically caused by Graves’ disease is known as a diffuse thyrotoxic goiter. As your thyroid gets bigger without treatment, your neck will begin to look more and more swollen. Sometimes a goiter gets big enough to make swallowing difficult, cause coughing, and disrupt sleep.
  • Thyroid eye disease (TED). Eye issues related to Graves’ disease are called Graves’ ophthalmopathy or Thyroid eye disease (TED). This group of symptoms occurs in 30 percent of people with Graves’s disease and can run the gamut from mild to very serious. Less severe—but still bothersome—manifestations of TED include red eyes, tearing, a feeling of sand or dust in your eyes, and sensitivity to light. 

    In more advanced cases of TED, one or both of your eyes may bulge or protrude from your eye sockets (also called orbits). Graves’ disease causes an inflammatory response in your eye muscles, which makes the muscles and tissues swell. Because of your orbits—the bony parts of your face which help to hold your eyes in place—your swollen eye muscles and tissues are forced outward. If enough swelling occurs, the inflamed eye tissue has no place to go, which then causes protruding eyes and limited eye movement as it is pushed out from the sockets that can no longer contain it. The medical term for this is exophthalmos, and it can make you look like you're staring.
  • Skin thickening. Some people with Graves’ disease develop thick skin or skin lesions that are patchy and pink over the front of their lower legs and feet. This is also called pretibial myxedema

How is Graves' disease diagnosed?

Once you tell your doctor about the symptoms you’ve been experiencing, you can expect to have a complete physical exam and be asked about your medical and family history. Before your appointment, you may want to check in with family members to see if there is Graves' disease or other autoimmune disorders in your family. During your medical visit, your doctor may order any of the following tests:

  • Blood tests. These tests can help your doctor evaluate the levels of your thyroid-stimulating hormone (TSH)—a pituitary hormone that normally stimulates your thyroid gland—and your thyroid hormone levels. If it is Graves', typically TSH will be lower than normal and your thyroid hormone levels will be higher. Another blood test can measure the levels of the antibody known to cause the disease, called thyrotropin receptor antibody (TRAb).
  • Radioactive iodine uptake. Your body uses iodine to make thyroid hormones. For this test, you will be given a small amount of radioactive iodine so your doctor can measure the rate at which your thyroid gland absorbs it. This will help your doctor figure out if Graves' disease is the cause of your high thyroid activity or if it's something else.
  • Ultrasound. Your doctor may order an ultrasound, the use of high frequency sound waves, to produce images of your thyroid gland. This will show if you have an enlarged thyroid, which could be linked to Graves' disease.

What are my treatment options for Graves' disease?

The goal of any treatment for Graves’ is to stop the overproduction of your thyroid and its effects on your body. Research has shown that certain types of treatments carry different risks for different people, according to Dr. Angell. So, it's important to discuss the pros and cons of each approach with your doctor in order to find the treatment that's best for you. Options include:

  • Radioactive iodine therapy. This is usually administered in a single small pill. When you swallow it, the radioactive iodine enters your bloodstream and is absorbed by your overactive thyroid cells. As a result, your thyroid should shrink, and your levels of thyroid hormone should return to normal. If not, it can be done a second time.

"There is widespread misconception about the level of risk associated with RAI," Dr. Bischoff says, referring to the debate over whether or not it is carcinogenic and the conflicting studies supporting either side. Currently, the official position of the American Thyroid Association (ATA) is, ''There has been no clear increase in cancer incidence in hyperthyroid patients that have been treated with radioactive iodine." Dr. Angell says these concerns and studies are something he would discuss in detail with a patient who is considering RAI treatment. RAI is also not advised if you’re pregnant.

  • Anti-thyroid medications. These drugs are known as antithyroid agents, including methimazole (Tapazole) or, much less often, propylthiouracil (PTU). They work by blocking the ability of your thyroid gland to make new thyroid hormone. Methimazole is often preferred because of less severe side-effects.

According to the ATA, treatment with antithyroid drugs for 12-18 months leads to a prolonged remission in 20-30% of patients with Graves' disease. In some cases, the drugs are also used before radioiodine treatment or surgery.

PTU can lead to serious liver problems, which is another reason it’s not used as much. Other common side effects of anti-thyroid medicines include rashes, hives, fever, and joint pain. A less common potential side effect is a decrease in your number of white blood cells, which can make you more prone to infection. If you develop a fever or sore throat while on anti-thyroid medication, call your doctor right away, as you will need to get a white blood cell count.

  • Surgery. Thyroidectomy involves the removal of all or most of your thyroid gland. Among possible complications are damage to your nearby parathyroid glands that control your calcium levels and damage to the nerves that control your vocal cords. Choosing a thyroid surgeon who specializes in thyroidectomies reduces your chance of these complications. After surgery, you will need to take thyroid hormone pills to replace your thyroid’s function.
  • Beta-blocker medications. Along with any of the aforementioned treatments, your doctor may also prescribe medicines known as beta-blockers, which don't affect thyroid hormone levels, but will help slow your heart rate and reduce other symptoms such as nervousness and tremors.

What are treatment options for thyroid eye disease?

If you have Graves', you have a risk of accompanying TED. Roughly half of people with Graves’ will have some amount of eye involvement. “Many have mild symptoms, while about 10% have serious issues,” says Dr. Angell.

In milder cases, thyroid eye disease can be managed by using over-the-counter artificial tears in the daytime and lubricating gel at night. However, if your symptoms are more severe, your doctor may suggest other treatments.

  • Tepezza (Teprotumumab). This new medication, which is the first prescription specifically for TED, was FDA-approved in January 2020. It's given via an IV in your arm every three weeks a total of eight times.
  • Corticosteroids. These medications, such as prednisone, may lower the swelling, but side effects include weight gain, higher blood sugar levels, and mood swings.  
  • Prisms. If you develop double vision as a result of TED or a side effect of thyroid surgery, having prisms added to your glasses may help reverse it.
  • Orbital decompression surgery. This surgery involves removing the bone between your eye socket, also known as the orbit, and your sinuses to give your eyes room to move back to their original position. It is usually reserved for cases when pressure on the optic nerve is threatening your vision.

What is a serious complication of Graves’ disease?

An extreme condition related to Graves' is called thyroid storm. “It's rare but it happens, and if not treated, it can be lethal,” says Dr. Bischoff. During thyroid storm, your body temperature, heart rate, and blood pressure all rise to dangerous levels. Thyroid storm usually occurs when an overactive thyroid is left untreated. In rare cases, it can be caused by radioactive iodine—even a week or more after treatment.

Symptoms of thyroid storm include excessive:

  • Agitation
  • Confusion
  • High body temperature
  • Heart pounding
  • Restlessness and sweating

If you have an overactive thyroid and experience these symptoms, head to the emergency room right away. It helps if your friends and family are also aware of them so they can help you get medical assistance if you need it and aren’t feeling well enough to make it there on your own.

What can I do to feel better right now?

  • For eye issues associated with TED, you can apply cold compresses to your eyes to combat swelling and inflammation, wear sunglasses to reduce light sensitivity, use lubricating eyedrops or gel to increase moisture, and elevate the head of your bed to relieve eye pressure from fluid buildup.
  • Over-the-counter creams or ointments with hydrocortisone can help soothe swelling or reddening skin.

Where can I find support?

The Graves' Disease and Thyroid Foundation provides resources, referrals, and up-to-date info on the latest advances in care for your condition so you can hit the ground running. The GDTF also offers patient advocates, as well as added support on their social media pages.

FAQ: Frequently Asked Questions

I’m pleasantly surprised by my recent weight loss. Can I skip or delay treatment to stay at my goal weight?

Women, in particular, often want to know if they can avoid or put off treatment for Graves’ disease, especially if they are happy with the weight loss that is a primary symptom of the condition. Dr. Messer emphasizes that it’s dangerous not to treat hyperthyroidism right away, because complications can rapidly become more severe and even life-threatening if it is allowed to progress.

I’m concerned about the side effects of existing treatments. Will my Graves' disease definitely get worse if I don’t treat it, or can I wait and see?

If left untreated, Graves’ disease can cause osteoporosis, infertility, early menopause, and even heart attack and stroke. That’s why it’s important to get tested and seek treatment as soon as you notice the first signs, even if you’re only experiencing mild symptoms so far.

Before I was diagnosed with Graves’ disease, I was put on psychiatric medications for the first time because I was feeling so unlike myself. Will my irritability, anxiety, and bad moods really dissipate with treatment for my overactive thyroid?

Yes. The good news is that once you have your thyroid under control, the emotional disturbances caused by your hormonal imbalances should resolve as well, and you may no longer need the same psychiatric medications. Tapering off any mental health med should always be done under the supervision of your doctor though, so don’t try to go cold turkey alone.

Is there a link between cigarette smoking and Graves' disease?

Yes. Cigarette smoking can impact your immune system, which increases your risk of Graves' disease.

Graves’ Disease Fast Facts

1. Graves' disease is the #1 cause of hyperthyroidism.
2. Graves’ is 7-8 times more likely to affect women than men.
3. The peak age of diagnosis is between 40-60.
4. Graves' disease affects 3% of the population.

 

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