Overcoming Thyroid Eye Disease
Many people with Graves’ disease also have thyroid eye disease, and can experience symptoms such as eye swelling, bulging, and double vision. In severe cases of thyroid eye disease conventional treatment methods might be necessary, but in many cases a natural treatment approach can be beneficial. In this episode I will discuss both conventional and natural treatment options, and so if you have thyroid eye disease you definitely will want to listen to this episode!
During this episode you’ll learn:
- The different stages of thyroid eye disease, and when surgery is usually the only option
- Some of the main risk factors for developing thyroid eye disease
- The different tests that are usually conducted when someone has thyroid eye disease
- Non-invasive conventional medical treatments
- When surgery is indicated
- Are there risks of receiving radioactive iodine when someone has thyroid eye disease
- Potential triggers of thyroid eye disease
- Diet and lifestyle factors to consider when dealing with thyroid eye disease
- Nutritional supplements that can benefit some people with thyroid eye disease
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Here is the transcript for this episode:
Welcome back to the Save My Thyroid podcast. This is Dr. Eric Osansky, and many people with Graves’ Disease experience thyroid eye disease. In this episode, I will talk about this condition, including both conventional and natural treatment options.
Many of you know that I personally had Graves’ Disease in 2008 into 2009. Fortunately, I did not have thyroid eye disease. Over the years, I have worked with many people who have had thyroid eye disease. Some people with mild thyroid eye disease, some with moderate to severe thyroid eye disease. Thankfully, I’ve helped a lot of these people through natural treatment methods. Unfortunately, I can’t say that 100% of people with thyroid eye disease will respond to a natural treatment approach, but it’s definitely worth giving it a try in many cases. In this episode, I will be talking about natural approaches, but I will also be talking about conventional treatment options as well.
It makes sense to begin with discussing what is thyroid eye disease? Thyroid eye disease, also known as Graves’ ophthalmopathy, this is an inflammatory eye condition that affects over 50% of people with Graves’ Disease. It could also affect some people with Hashimoto’s thyroiditis. With thyroid eye disease the immune system attacks the tissues of the eyes. It is the same autoimmune component that is involved with Graves’ Disease or occasionally Hashimoto’s. For those with Graves’ Disease who have thyroid eye disease, most of those people have very high levels of thyroid stimulating immunoglobulins, which are the antibodies specific to Graves’ Disease.
Also worth mentioning that the degree of eye involvement varies. Some will have a mild case of eye involvement. Of course, some have severe cases. Some will even have optic nerve compression. Clinically evident thyroid eye disease can be detected in approximately 25-50% of patients. Fortunately, only 3-5% will experience severe forms of thyroid eye disease. The most common presentation is lid retraction followed by proptosis. Serious complications include permanent sight loss and permanent diplopia (double vision). Thankfully, both of these are rare.
Let’s briefly discuss a few of the risk factors associated with developing thyroid eye disease. First of all, ethnicity can play a role. African Americans are at greater risk of developing thyroid eye disease followed by Europeans and Asians. Being a female will make you more likely to develop it than males. Females also are more likely to have Graves’ Disease as well as most other autoimmune conditions. There are exceptions. But when it comes to thyroid autoimmunity, both Graves’ and Hashimoto’s are much more common in women. Treatment with radioactive iodine. I will discuss this in detail later. Also having hyperthyroidism is a potential risk factor. Smoking is a risk factor for both developing Graves’ Disease as well as thyroid eye disease.
As far as who has thyroid eye disease, approximately 85% of those with thyroid eye disease have Graves’ Disease. 10% will have Hashimoto’s. A very small percentage, approximately 5%, are euthyroid, which means they don’t have hyperthyroidism or hypothyroidism, Graves’ Disease or Hashimoto’s.
Now I want to talk a little bit about the pathogenesis of thyroid eye disease. It’s caused by retro orbital inflammation to which orbital fibroblast activation is a key contributor. You might be wondering what is a fibroblast? It’s a type of cell that synthesizes the extracellular matrix as well as collagen. Fibroblast activation is assumed to occur secondary to stimulatory autoantibodies. These fibroblasts express the TSH receptor and produce extracellular matrix components and proinflammatory molecules, which are molecules that promote inflammation. Inflammation of the extraocular muscles can lead to restrictive eye movements as well as proptosis. In some cases, the optic nerve can be compressed, which can cause optic neuropathy and in rare cases can result in permanent visual loss. There are situations when the TSH receptor antibodies are not present, as in cases of Hashimoto’s thyroiditis.
Let’s discuss some of the signs and symptoms of thyroid eye disease. Many people have dry eyes, and they don’t have thyroid eye disease, but that is one potential symptom. Diplopia, which I mentioned earlier, which is double vision. Pain on eye movements. Some people have restricted eye movements. Proptosis, or exophthalmos. Lid retraction is characterized by the upward displacement of the upper eyelid or downward displacement of the lower eyelid, thereby exposing the sclera. Lid lag is the lagging of the upper eyelid on downward rotation of the eye. Some people will experience periorbital swelling or the inability to close their eyes while they are sleeping. Sometimes there is optic neuropathy.
The most clinical sign of thyroid eye disease is eyelid retraction. This occurs in 90% of patients. This is followed by exophthalmos, which is bulging of the eyes, and eye movement restrictions.
Let’s discuss the different stages of thyroid eye disease. The first stage is the active inflammatory phase. It involves a worsening of signs and symptoms. Active disease implies the presence of inflammatory features and suggests the potential of response of anti-inflammatory treatments.
In the second phase, you will get gradual improvement of inflammatory signs and symptoms.
The third phase is the inactive state. Inactive disease defines the phase where no inflammation is present, yet residual fibrosis and its secondary effects persist. In the inactive phase, only surgical treatment can alter the outcomes. You want to try to do as much as you can during the active phase.
Let’s go ahead and discuss problems with vision. The question is should you visit an eye doctor? When considering going to an eye doctor, some will think they should go to an optometrist, but there is also an ophthalmologist. An optometrist examines eyes for both vision and health problems and correct refractive errors by prescribing eyeglasses and contact lenses. I see an optometrist when I want to get an eye exam and a new prescription for my glasses.
On the other hand, an ophthalmologist is a medical doctor or a Doctor of Osteopathic Medicine who specializes in eye and vision care. Ophthalmology deals with the anatomy, physiology, and diseases of the eyeball and orbit.
One of the primary goals is to rule out optic neuropathy. An eye exam will reveal abnormalities and visual acuity, color vision assessment or peripheral vision field assessments as well as ruling out diplopia (double vision) although of course many times the patient will be able to tell if they have double vision without an eye exam. They will also look for strabismus, which is misalignment of the eyes, having cross eyes. When you are dealing with thyroid eye disease, or if an endocrinologist suspects you have thyroid eye disease, chances are they are going to refer you out to an ophthalmologist and probably not an optometrist.
Let’s discuss some of the different testing options. Most of those people will have had a thyroid panel before being diagnosed with thyroid eye disease. With the thyroid panel, ideally you want to look at the TSH, which is thyroid -stimulating hormone as well as the thyroid hormone levels. I like to look at the free T3 and free T4 in my practice. Thyroid autoantibodies. TSH receptor antibodies or TRAB are associated with Graves’ Disease. Thyroid stimulating immunoglobulins or TSI are the most common type of TSH receptor antibodies. In my practice, I will typically test for TSI. Some endocrinologists prefer TRAB. Some will do both. I don’t think it’s absolutely necessary to do both, not that it would hurt to do both. But if one is elevated, typically both will be elevated.
When it comes to orbital imaging, some options include an MRI or a CT scan. An MRI is better for identifying active disease, whereas a CT scan is better for bone resolution, visual field analysis, or an optometric assessment.
Let’s go ahead and start talking about the different treatment options. We will start with conventional medical treatment. The primary goal is to normalize the thyroid hormone levels. Of course, here we are focusing on the thyroid gland. You want to do things for the thyroid eye disease, but one of the main goals is to normalize thyroid hormone levels. They might give the patient ocular lubricants, especially if the person is experiencing dry eyes, which is quite common. Taping the eyelids closed at night might be something that is recommended. They might give prisms and spectacles to control the double vision.
What about the autoimmune component? We know that most endocrinologists and ophthalmologists won’t do anything to address the underlying cause of the autoimmune component. Whereas with Graves’ Disease, they will typically just give antithyroid medication, but with thyroid eye disease, many times they will do something for the immune system. Not addressing the cause of the autoimmune component, but they will do some things for the immune system.
One of the more common treatments they will give is systemic corticosteroids, especially in the active phase. It doesn’t do much good in the inactive phase. Especially with more severe cases, systemic corticosteroids, especially prednisone, will be given to control the inflammation. Sometimes steroid sparing immunosuppressive agents such as Methotrexate will be given. But more commonly, a corticosteroid like prednisone.
As far as side effects of corticosteroids, one study shows that intravenous corticosteroids resulted in milder side effects, including palpitations, weight gain, gastrointestinal distress, and sleeplessness. More significant side effects were reported with the use of oral corticosteroids, including Cushing’s features, secondary adrenal insufficiency, weight gain, hypertension, muscle pains, depression, hyperglycemia, and osteoporosis.
However, a fatal acute hypertoxicity has been reported in four patients treated with IV corticosteroids. Other severe complications of IV corticosteroids have been reported, including cardiovascular or cerebral vascular events, autoimmune encephalitis, liver test abnormalities. Everything comes down to risk versus benefit. There are risks either way. With most thyroid eye disease patients, when a doctor prescribes corticosteroids, it will usually be oral. Now you’re aware of some of the side effects of both oral and IV corticosteroids.
I want to briefly talk about Tepezza. I’m sure I’ll have a future episode where I discuss it in greater detail. This is a new treatment for thyroid eye disease; it was made available in early 2020. It has been shown in trials to decrease proptosis, double vision, and other symptoms associated with moderate to severe cases of thyroid eye disease. It is administered through eight intravenous infusions. The dose depends on the patient’s weight. The starting dose used in the studies was 10mg/kg followed by 20mg/kg.
I have had a few patients on Tepezza, not a whole lot. One of the patients had both the proptosis as well as the double vision. It really didn’t help at all with the double vision, but it did help a lot with the proptosis. That seems to be the case with the majority of people in the research, not that it can’t help with some cases of double vision. It might be worth a try.
I’ll also say that out of pocket, it’s outrageously expensive, so if you don’t have health insurance, Tepezza probably won’t be an option. For most people, it likely won’t be an option. I would still contact the company because I did hear in some cases they might give a massive discount, or even for free. I don’t know for sure. I know they have done this with other medications and still currently do it.
I have a good friend with leukemia. 10 years ago—he is still with us—he was diagnosed, and the medication Gleevec, which was newer at the time and really expensive, although not nearly as expensive as Tepezza. Either way, my friend was able to get that fully covered. He thankfully didn’t have to pay for it because he couldn’t afford to pay for it at the time.
You might want to look into something similar with Tepezza. That is for those considering receiving Tepezza. I’m not saying most people with thyroid eye disease will want to receive it, but if you have a severe case, maybe you will take a natural treatment approach initially. It depends. If someone has really bad double vision, they might want to jump into something like Tepezza. It depends on the person and the situation.
There are also surgical options. Surgery for cosmetic appearances and symptomatic improvement, decompression to improve proptosis and lid position. Motility surgery involves extraocular muscle repositioning to reduce or eliminate diplopia. Lid surgery to reposition the eyelid.
When is surgery indicated? The indications include optic neuropathy, diplopia, cornea exposure, as well as cosmesis. Surgical procedures may be orbited toward orbital decompression, strabismus repair, and the correction of eyelid abnormality. Traditionally, orbital decompression if required is performed initially, followed by strabismus surgery, and then, if necessary, eyelid repair. Decompression may be necessary on an urgent basis for compressive optic neuropathy or severe proptosis with corneal obscuration refractive to other treatment measures.
However, most decompression surgery is performed when a patient has been stable in an inactive state for at least 6-8 months. You really don’t want to do decompressive surgery in the active phase because the eye is still changing, and the person might end up needing multiple decompressive surgeries. Any surgical procedure that enlarges the bony bit or removes the orbital fat is defined as orbital decompression.
Early, I mentioned radioactive iodine, being a potential risk with the potential development of thyroid eye disease. We know that radioactive iodine is commonly recommended as a treatment for Graves’ Disease. Overall, studies suggest that antithyroid drugs or receiving a thyroidectomy do not affect the course of thyroid eye disease. However, there is a small but significant increased risk of worsening following radioactive iodine in patients with active disease. It’s not 100% of people who get radioactive iodine and have thyroid eye disease who will get a worsening, but again, it’s a small amount although significant.
By contrast, it appears that patients with inactive thyroid eye disease may be treated with radioactive iodine without increased risk.
I’ll also add that I had a conversation with an ophthalmologist. She said that if someone receives radioactive iodine, it might be a good idea for them to be put on a corticosteroid such as prednisone. In her case, she said she has never had anybody with Graves’ Disease who received radioactive iodine develop thyroid eye disease or have thyroid eye disease worsen when receiving radioactive iodine and taking a corticosteroid at the same time.
Of course, my goal is to prevent people from receiving radioactive iodine in the first place. I am definitely not telling people to get radioactive iodine and to take a corticosteroid. But if someone does choose to get radioactive iodine, they might want to consider taking a corticosteroid. This is especially true if you know you have thyroid eye disease. The problem is in some cases you might not think you have thyroid eye disease, and your endocrinologist might not think you have thyroid eye disease, but it might be very mild, subclinical. This has happened before, where someone thinks they don’t have thyroid eye disease, they receive radioactive iodine, and then all of a sudden, they develop thyroid eye disease. This can happen, which is why if you do receive radioactive iodine—again, I hate recommending people to take corticosteroids, but again, everything does come down to risks versus benefits. At least it’s something to think about.
The million-dollar question: Can natural treatments benefit people with thyroid eye disease? Yes, it can, but it depends on the person and the severity of their condition. I mentioned earlier that I wish 100% of people with thyroid eye disease would respond to the natural treatment approach. But this isn’t the case.
The goal of course is the same as with Graves’. It’s to address the autoimmune component. The triad of autoimmunity or the three-legged stool of autoimmunity involves three components, hence the triad. Component #1 is a genetic predisposition. While you can’t change your genetics, fortunately you can address the other two components of this triad, which is the presence of one or more environmental triggers as well as an increase in intestinal permeability, which is the medical term for a leaky gut.
The triggers of thyroid eye disease are pretty much the same as the triggers of Graves’ Disease. There could be certain food allergens such as gluten, dairy, corn. Certain infections such as H-pylori. Viruses such as Epstein-Barr. Parasites. Stress also is a potential trigger. Stress causes dysregulation of the immune system and decreases secretory IGA, which makes you more susceptible to infections, which in turn can be a trigger. Certain environmental toxins such as mercury can be a trigger.
You also want to heal the gut. In a different episode, I discussed the 5-R protocol, which is to remove, replace, reinoculate, repair, and rebalance. You want to remove certain foods. If someone has a gut infection, you want to remove the infection. If you know you are being exposed to a certain chemical that is causing an immune response, you want to remove it. The challenge is you don’t always know if it’s causing an immune response. Some people have mercury amalgams that are not causing an immune response. That doesn’t mean it’s not causing other problems, but it may not be an autoimmune trigger. In some cases, it can be a trigger. There is some testing to determine if mercury is causing an immune response.
Replace is the second R. Replacing things such as digestive enzymes, fiber, stomach acid, maybe in the form of betaine HCL or apple cider vinegar to stimulate the body’s own production of stomach acid.
Reinoculate through fermented foods as well as probiotic supplements, prebiotic supplements, and prebiotic foods.
Repair. Following a gut repair diet or drinking bone broth or cabbage juice if you are a vegan/vegetarian. There are other gut healing agents such as L-glutamine.
The final R is rebalance. For example, rebalance the parasympathetic nervous system.
Dietary considerations. You want to eat an anti-inflammatory diet. That is the case with any health condition. Consisting of whole healthy foods, plenty of vegetables. Try to avoid refined foods and sugars as well as unhealthy oils, fast food.
One question you might have is should you follow an autoimmune paleo diet if you are dealing with thyroid eye disease? Again, thyroid eye disease is an autoimmune condition. An autoimmune paleo diet eliminates the most common allergens such as gluten, dairy, corn, soy. It also eliminates other foods such as eggs, nightshades, nuts, and seeds. The reason is because these have compounds that can interfere with gut healing and potentially can cause inflammation.
I will say that some people might be perfectly fine following a standard Paleo diet and not an autoimmune paleo diet. It really is up to you. If it’s moderate to severe thyroid eye disease, you might want to just go with the AIP diet. If it’s more on the mild side, I would still say not a bad idea to start with AIP, but since it’s much more restrictive, you might want to go with the standard Paleo diet.
There are other lifestyle factors to consider. You want to try to reduce stress levels if you can. For many people, that’s not an option. Either way, you want to increase stress handling. You want to get enough sleep.
Minimize your exposure to environmental toxins. You want to focus on your home environment because as soon as you walk outside, you don’t have control over the outside environment, but you can focus on improving your home environment. You can use natural cleaners and cosmetics. Drink filtered or purified water. Maybe get an air purifier.
Of course, many people want to know if there are supplements they can take for thyroid eye disease. There are supplements. Keep in mind that first of all, supplements are not going to work if you are eating an inflammatory diet. You want to do everything I mentioned earlier about eating a healthy diet and taking care of lifestyle factors.
Also, higher doses may be needed. For example, selenium, a common dose I will recommend to people is 200mcg. Some people may benefit from 400mcg or 600 mcg. However, selenium toxicity is a concern in some people. So I am not suggesting for people to take 400 or 600 mcg. But in some cases, people might find that to be more effective.
Turmeric or curcumin supplement. A common dose might be 500mg. People with thyroid eye disease might benefit from taking a few thousand mg.
EPA and DHA. I commonly recommend 2,000 mg of EPA and 1,000 mg of DHA. If you take a fish oil like a higher potency one, you probably won’t find 2,000 in a single soft shell, but maybe a few soft shells. People will ask about cod liver oil or krill oil. The problem with those is they won’t have a lot of EPA and DHA, so you are going to have to take a lot of pills to get to 2,000 mg of EPA and 1,000 mg of DHA.
Same thing with vegetarian sources such as algae oil. If someone is a vegan/vegetarian and they absolutely don’t want to consume a fish oil supplement, then algae oil or flax oil or flaxseeds are an option. The problem is it has to convert to the EPA and DHA. Not everybody will do a good job of this conversion.
Healthy Vitamin D levels are important for reducing inflammation. Vitamin D level greater than 50 ng/ml, or if you are using a lab that uses nmol/ml, then 125 nmol is equivalent. Some sources will say between 60-80 ng/mL is even better. You could try to do this through sun. A lot of people will need to supplement with Vitamin D. If you are supplementing with VitaminD3, I would always recommend taking Vitamin K2 as that guides calcium into the bone. Otherwise, calcium might end up in the soft tissues. There is resveratrol, which can also help with the inflammatory components of thyroid eye disease.
Proteolytic enzymes. It’s important to take these on an empty stomach because if you take them with food, they will digest the food. If you take them away from food, these can also greatly help with reducing inflammation.
Alpha lipoic acid can increase glutathione. Taking glutathione by itself, like a liposomal or an acetylated glutathione could also be beneficial.
That being said, you need to remove the trigger. If all you do is take supplements, it might help to some extent, but some people won’t notice a difference. You do really need to remove the autoimmune trigger. Part of that triad of autoimmunity is also healing the gut.
Let’s go ahead and discuss some action steps you can take:
- If you are experiencing moderate to severe eye symptoms, you might want to consider seeing an ophthalmologist.
- You definitely want to eat an anti-inflammatory diet, improve your stress handling skills, and get sufficient sleep. I will reinforce this because if you don’t get enough sleep, that can also be inflammatory.
- You want to find and remove your immune system triggers. Heal your gut through the 5-R protocol that I mentioned.
- In some cases, consider taking supplements to reduce inflammation.
- If thyroid eye disease is severe, conventional treatment might be necessary. There is nothing wrong with trying a natural treatment approach initially. If things are not heading in the right direction, definitely consider some of the conventional treatments I mentioned.
That’s all I want to discuss in this episode. If you are dealing with thyroid eye disease, I hope you found this episode to be valuable. Thanks again for tuning in. I will catch you on the next episode.