Clearing Up Misconceptions About Thyroid Eye Disease
with Raymond Douglas, MD, PhD, and Elena Christofides, MD
How would you know if you have thyroid eye disease ? The main symptoms include bulging eyes, a pronounced stare, inverted eyelids, dry eyes, excessive tearing of the eyes, double vision, eyes looking in two different directions, and in the most serious cases, vision loss.
According to a survey of people who have Graves disease, are at risk of TED, and others without a thyroid condition,¹yet the individuals with a higher risk of developing eye problems arent always aware that this is a distinct possibility for them.
More disconcerting, even among individuals who have already been diagnosed with thyroid eye disease, there seems to be little awareness of the risk of symptom recurrence or a clear understanding about what treatment options are available and recommended to manage this condition.¹
How Does Thyroid Eye Disease Affect Mental Health
TED can cause eye pain, double vision, loss of vision, and changes to your appearance which may impact your quality of life. The impacts of TED can lead you to experience to depression, anxiety, loss of independence, and reduced self-confidence. You may have a decreased desire to socialize with others, have trouble with productivity at school or work, and stop doing activities you once enjoyed.
To help support your mental health as you deal with TED:
- Talk to your doctor: Talk to your doctor about any changes to your emotional well-being. Ask questions on how TED will affect your daily life and work.
- Seek support: Seek out support groups of others who are going through TED. The Graves Disease and Thyroid Foundation offers support groups for people with Graves disease, thyroid eye disease, and other thyroid conditions. These groups can help you learn about your condition, share your experience, and find support.
- Connect with others: Stay connected friends and family to keep you from feeling isolated.
- Take time to enjoy life: Take part in activities or hobbies that make you happy.
- Exercise: Exercise can help symptoms of depression or anxiety and make you feel better. Talk to your health care professional to determine what exercise routine may work best for you, especially if you have changes to your vision due to TED.
To learn more, check out the following resources:
Problems Associated With Thyroid Eye Disease
Dry irritated eyes
TED may cause you to experience dry, irritated and often teary eyes. This is usually due to the eyelids retracting and or protruding. When the eyelids do not close completely at night, the cornea dries out and becomes quite uncomfortable. The use of lubricating ointment for the eye at night and artificial tears during the day can provide a great deal of relief. Do not be afraid to use the tears frequently, as much as every 1/2 to 1 hour if necessary.
TED can cause swelling, irritation and scarring of the muscles that move the eyes. This can lead to double vision. Double vision may not be present all the time, sometimes it is noticeable only when looking in certain directions, while in other patients it is always present. Often the amount of double vision will change week to week. At times it can disappear completely without treatment. Once the double vision has been stable for at least several months, surgery can be performed to correct it if necessary. Your specialist will refer you to a specialist for the surgery.
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Identification And Control Of Triggers And Drives
Both hyper- and hypo-thyroidism can cause thyroid orbital myopathy to progress. In the latter case, increased secretion of TSH-receptor by thyroid follicular cells may be responsible. Therefore, careful management of thyroid endocrine disease is essential before attempting to treat the orbital myopathy by immunomodulation.
The adequacy of endocrine control is estimated from the plasma TSH level, which alters slowly, but best reflects the availability of the active hormone, tri-iodothyronine, in tissues. A blockreplace regime gives more stable control of thyroid function than does the simple titration of carbimazole dose against plasma TSH. In the latter regime, it is likely that short-term fluctuations in endogenous thyroxine secretion arise, but fail to be reflected by TSH on account of the longer period of its response.
It is conventional endocrine practice to withdraw a blockreplace regime after 6 months in patients with a first episode of thyrotoxicosis. About 60% require no further treatment and those in whom disease recurs usually receive radioactive iodine or thyroidectomy. In patients with thyroid eye disease, a recurrence of thyrotoxicosis risks reactivating the orbital myopathy therefore, the blockreplace treatment should continue until thyroid eye disease has been inactive clinically for at least 6 months.
Antigen release from the thyroid
Infection and malignancy
What Are The Risks Of Thyroidectomy
- Transient injury to the recurrent laryngeal nerve or the external branch of the superior laryngeal nerve resulting in voice hoarseness, loss of voice pitch, range or projection, or trouble swallowing. Risk of permanent injury is very low in experienced thyroid surgeons hands.
- Transient difficulties with low blood calcium levels . The risk of permanent hypocalcemia due to irreparable damage to the parathyroid glands is exceedingly low in experienced thyroid surgeons hands.
- The risk of bleeding in the postoperative period at the surgical site is low. However due to the increased blood flow to the thyroid gland in GD, this risk is higher for Graves patients than patients undergoing thyroid surgery for other reasons.
- The risk of infection is exceedingly low.
- Swelling or fluid build-up may occur at the surgical site after surgery.
- Patients will require lifelong thyroid hormone replacement.
- During surgery, the handling of the thyroid gland can cause release of additional thyroid hormone. If you are well controlled prior surgery, your body should be protected from the effects of this extra hormone however, if your hormones are not well controlled, this could lead to a dangerous condition of thyroid storm.
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Thyroid Surgery For Graves’ Disease And Graves’ Opthalmopathy
The aim of this review was to compare different surgical techniques for treatment of Graves’ disease. We wanted to address whether surgically removing the whole thyroid gland is better than removing most of the gland at controlling increased activity of the thyroid and eye symptoms associated with Graves’ disease.
Graves’ disease is a common condition affecting the thyroid gland, which has an important role in controlling the body’s metabolism. The body’s own immune system attacks the thyroid gland and causes it to work much harder. This overactivity can lead to increased risk of heart attacks and strokes if left untreated for a long period of time. Graves’ disease also causes protrusion of the eye and may limit eye movement . Graves’ disease is generally treated by medication alone or sometimes with radiation or surgery. In recent years, there has been increasing interest in surgery for Graves’ disease and other thyroid problems, as results of surgery and health-related quality of life outcomes appear promising. However, there is controversy over which surgical technique is best, as total thyroidectomy may give better control of disease long term, compared with subtotal thyroidectomy, but carry a greater risk of postoperative complications, such as damage to the so-called recurrent laryngeal nerve .
Quality of the evidence
Currentness of evidence
Things You Should Know If You Have A Thyroidectomy
I’ve treated hundreds of thyroid patients in my clinical practice and I’ve run into many patients without a thyroid.
These patients are certainly more difficult to treat than run of the mill thyroid patients but I’ve learned much in my years of treating them.
While they are more difficult, it’s still possible to help them lose weight and feel better.
It just takes the right approach…
With that in mind, here are 5 things that I think you should know if you’ve had your thyroid removed based on THIS experience.
#1. You are now HYPOTHYROID.
This is probably the single most important thing that you understand if your thyroid has been removed.
Once your thyroid is removed you are now considered to be HYPOTHYROID.
It doesn’t matter WHY your thyroid was removed, once it is removed you now have a sluggish thyroid.
I don’t care if your thyroid was removed because you WERE hyperthyroid .
Thyroid removal is considered to be a cure for hyperthyroidism but once your thyroid is out you’ve effectively traded hyperthyroidism for hypothyroidism.
What does it mean to be hypothyroid?
It means that you are reliant upon thyroid medication.
And because doctors do a terrible job at replacing lost thyroid hormone once the thyroid has been removed, you will probably always feel a little bit hypothyroid .
This is so important because many people will read my blog posts and if they’ve had their thyroid removed they will ask if it applies to them.
#2. T4 isn’t enough by itself for you.
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Tuesday Q And A: Several Treatment Options Decrease Symptoms Of Graves Disease
DEAR MAYO CLINIC: Three months ago I was diagnosed with Graves disease. I have decided to have a thyroidectomy and want to know what to expect after the procedure. Will all of my symptoms go away immediately after surgery? What are the side effects of having the thyroid removed?
ANSWER: Thyroid removal is one of several treatment options that can effectively decrease symptoms of Graves disease. Others include anti-thyroid medications and radioiodine. Each person is different, and no one treatment is best for everyone. A thyroidectomy often relieves symptoms of Graves disease. But as with all surgery, there are risks and possible complications associated with thyroidectomy.
Graves disease is an immune system disorder that results in the overproduction of thyroid hormones, a condition known as hyperthyroidism. Because thyroid hormones affect many of your bodys functions, signs and symptoms of Graves disease can be wide ranging.
Medications that interfere with the thyroids use of iodine to produce hormones, known as anti-thyroid medications, may be helpful in controlling the disease. These prescription medications include propylthiouracil and methimazole.
Treating Graves disease with a thyroidectomy involves removing all or nearly all of the thyroid gland. The main side effect of not having a thyroid is the need for ongoing thyroid medication usually one pill a day. Treatment with radioiodine also results in a need for life-long thyroid medication.
What Are The Benefits Of Thyroidectomy For Graves’ Disease
Thyroidectomy provides those with GD a rapid cure of hyperthyroidism and a transition from anti-thyroid medications to full thyroid hormone supplementation during the perioperative period . Patients should continue all their anti-thyroid medications and beta blockers until the day of surgery, at which time patients should discontinue taking. Beta blockers may be continued for a few days after surgery and then may be tapered or stopped. Thyroid hormone supplementation is often started the following day, or a few days later in those patients with poor hormone control during the pre-operative period.
As thyroidectomy removes all or nearly all thyroid tissue from the neck, this will result in a more rapid decrease in antibody production over time, which is beneficial for those with eye disease. It also avoids a significant spike in antibody production seen with radioactive iodine ablation that can exacerbate eye disease in some patients . For patients with significant compressive symptoms from their enlarged thyroid , thyroidectomy will remove the enlarged thyroid and should resolve these symptoms.
For patients who wish to avoid radiation exposure to themselves or loved ones, thyroidectomy is a radiation-free alternative for definitive management of their disease.
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Thyroid Eye Disease Center
Quick link – Oculofacial Plastics and Reconstructive Surgery
The eye changes associated with thyroid disease are referred to as Thyroid Eye Disease . Your doctor may also use the term Thyroid Associated Orbitopathy . Although TED is seen in all types of thyroid disorders, it is most common in patients that are or were hyperthyroid. It also rarely occurs in those who are hypothyroid and even when there is an absence of thyroid abnormalities in the body.
Thyroid disease can cause multiple eye problems. These include redness and swelling, double vision, decreased vision, eyelid retraction , and a bulging of the eye itself. It is important to realize that if one of these occurs, it does not mean you will necessarily get all the other symptoms too.
Eye problems will usually occur and frequently change in type or severity for between six months and two years. Once stabilized, it is unusual for the eyes to start changing again. Some patients are left with permanent changes, and in others the eyes return to normal. A great deal can be done to improve these conditions with medical treatment, although some patients will need surgery to help ease their issues.
What Are The Symptoms Of Thyroid Eye Disease
If you have Graves disease, eye symptoms most often begin within six months of disease diagnosis. Very rarely, eye problems may develop long after the Graves disease has been treated. In some patients with eye symptoms, hyperthyroidism never develops and, rarely, patients may have hypothyroidism. The severity of the eye symptoms is not related to the severity of the hyperthyroidism.
Symptoms of thyroid eye disease are caused by the tissues, fat, and muscles of the eye socket swelling and pushing the eyeball forward. It may be possible that symptoms may appear in one eye more than the other. The symptoms of thyroid eye disease include:
Dry, gritty and irritated eyes
Bulging eyes and lid retraction giving a staring or startled appearance
In more advanced thyroid eye disease, there may also be:
- Trouble moving eyes and closing eyes
- Inability to completely close your eye causing a corneal ulcer
- Colors appear to be dull or not as bright
- Blurred or loss of vision due to optic nerve compression or corneal damage
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What Is Thyroid Eye Disease
As thyroid eye disease begins, a lymphocytic infiltrate sweeps through the affected orbital muscles. When inflamed, they fail to contract and comply freely during eye movements, and pain and diplopia are early symptoms.
In this inflammatory phase of the disease, preadipocytes and fibroblasts, within the perimysium of rectus and oblique muscles and in orbital fat, secrete copious quantities of glycosaminoglycans. This hygroscopic material retains water, which causes the affected muscles to swell and further interferes with their function.
The orbit is a confined space and its bony surround is deficient only anteriorly. As the volume of its contents increases, orbital tension rises and patients stratify according to the ease with which this is relieved by proptosis:
Restricted proptosis/high orbital tension
Proptosis may be prevented by unyielding lids and orbital septa, and by poorly compliant rectus muscles that anchor the globe to the orbital apex. Under these circumstances, the swelling rectus muscle bellies are forced into ever tighter proximity to the optic nerve, which they may compress directly where it enters the apex of the muscle cone. Orbital venous pressure can also rise, causing reduced pressure gradients across intraocular microcirculations, and disc oedema. Raised episcleral venous pressure is followed by elevation of intraocular pressure.
Proptosis/ocular surface damage
Signs And Symptoms Of Graves’ Eye Disease
In Graves eye disease the tissue around the eye is attacked, and the result is inflammation and swelling, causing:
- Redness and pain
- Dry eye and irritation, occurring when the eyelids cannot close completely over bulging eyes
Progressive swelling may cause:
- Increased pressure inside the eye socket
- Pressure-pain or deep headache, which worsens with eye movements
The muscles around the eye are particularly susceptible to the attack of lymphocytes. As they tighten and lose their ability to stretch, these symptoms can occur:
- The eye is pushed forward in its socket causing a staring appearance
- Restriction of the eyes normal movements, resulting in double vision
As symptoms build, many patients fear they will lose their vision. Fortunately, patients almost never go blind from Graves eye disease.
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Biologics For Thyroid Eye Disease
Image courtesy of Dr. Rona Z SilkissImage courtesy of Dr. Rona Z Silkiss
Biologics for Thyroid Eye Disease
Thyroid Eye Disease Overview
Graves Disease or thyroid endocrinopathy is characterized by an autoimmune activation of the thyrotropin receptor . Thyroid receptor antibodies stimulate the THSR in thyrocytes, mimicking TSH causing hyperthyroidism. Thyroid eye disease or Graves orbitopathy is an autoimmune-driven ophthalmic presentation affecting about 25% of patients with GD. However, thyroid eye disease may present independently of GD or autoantibodies and is thought to be a more complex disease process involving genetic and environmental factors .
The ophthalmic manifestations of TED include periorbital edema, erythema, proptosis, eyelid retraction, restrictive strabismus leading to diplopia, chemosis, and in more severe cases, increased intraocular pressure, exposure keratopathy and even optic nerve compression . These symptoms can have a profound physical and psychological effect. Additionally, TED may affect CNS function and cerebral cortical thickness .
Both antigen-specific and antigen-independent pathways play a role in TED, though the presence of autoantibodies implicates both cell-mediated and humoral immunity. TED most often manifests when patients are hyperthyroid, though it may present when patients are hypothyroid or even euthyroid and can occur concurrently with endocrine abnormalities or may precede or follow them .
What Causes Thyroid Eye Disease
TED is usually associated with systemic hyperthyroidism or Graves’ disease. This disease is caused by what is described as an autoimmune process. Autoimmune disease may be understood as a process by which the body sees some part of itself as being foreign and reacts to it much the same way that it would to any bacteria or virus.
In the case of Graves’ disease, the body sees the thyroid gland as the foreign object and produces antibodies that attack the thyroid gland. This often causes the thyroid gland to become over active.
The eye version of this disease is called Thyroid Eye Disease. However, in the case of TED, different antibodies attack the muscles associated with eye and eyelid movement. Although the thyroid gland and the eye may be under attack by the same immune system, it is felt that both conditions remain mostly independent of one another. The antibodies that attack the eye can cause inflammation and swelling of the fat and muscles around the eye, which is what can eventually cause bulging of the eyes, double vision and retraction of the eyelids.
Will my eyes go back to normal after treatment?
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