On Friday April 30th I interviewed Dr. Rudrani Banik on thyroid eye disease, and below is the written transcript. If you would prefer to watch the interview you can access it by clicking here:
Here is the transcript:
Dr. Eric:
With me I have Dr. Rani Banik, who is a board certified ophthalmologist and fellowship-trained neuro-ophthalmologist with additional training in functional medicine. Dr. Rani focuses on the root cause of eye diseases and uses integrative strategies for conditions such as thyroid eye disease, macular degeneration, cataracts, dry eyes, glaucoma, as well as other diseases of the visual system, and her treatments are based on nutrition, botanicals, lifestyle modification, essential oils, and supplements. Dr. Rani runs a private practice based in New York City. In Manhattan. Is that correct?
Dr. Rani:
That is correct, yes.
Dr. Eric:
She is also an Associate Professor on Mount Sinai in New York City where she serves an educator and researcher. Dr. Rani also is frequently featured as an expert in the media, and has been interviewed on a lot of different places, Good Morning America, CBS, NBC ABC, New York Times, Washington Post, Fox, and a number of others. Dr. Rani has been voted as Castle Connolly Top Doctor and New York Magazine’s Best Doctor in Ophthalmology every years since 2017.
Well, thanks for joining me, Dr. Rani.
Dr. Rani:
Thank you Dr. Eric for that kind, kind introduction. That was wonderful. Thank you.
Dr. Eric:
You are very welcome, Dr. Rani. Well, I’d like to start out by asking you to explain to those who are unfamiliar the difference between an optometrist and an ophthalmologist, and then also a neuro-ophthalmologist. So, if you could explain the difference between the three.
Dr. Rani:
Sure. So, many people don’t realize that there are very different Os in eye care. So, there’s ophthalmologist, optometrist. There’s also optician. So, what’s the difference? Well, an ophthalmologist is a doctor who has gone through medical school, and then done an internship and residency in ophthalmology, and some of us have done fellowships as well. An ophthalmologist treats eyes diseases both medically and surgically. We also do prescribe glasses and do additional testing as well.
An optometrist has gone to optometry school. So, optometry school is for four years, and then after that, not all optometrists, but some optometrists do a residency as well, a one to two-year residency. Depending on the state, the scope of, I guess, care for optometrists varies. Optometrists typically prescribe contacts, glasses. They do primary eye care, again, depending on the state. Depending on the state, some of them can actually prescribe medications as well, for example, eye drops. They can manage basic diseases like early glaucoma, et cetera.
Then an optician is someone who actually has a license in opticianry, and an optician has an associates degree. I think it’s about two years, and they actually make the glasses, and they help to fit the glasses.
Then a neuro-ophthalmologist, which is what I am, is basically an ophthalmologist who’s done additional training. So, I did a fellowship in neuro-ophthalmology. It was an extra year of training. Neuro-ophthalmology, basically, encompasses all the connections between the brain and the eye. So, all the cranial nerves that have to do with vision, how our brain processes vision. So, I deal with a lot of different neurologic conditions like brain strokes, brain tumors, concussion, autoimmune diseases that affect the eye and the brain, for example, multiple sclerosis, and also thyroid eye disease. So, that’s also within my skillset in a nutshell. I also deal with migraines. So, that’s a big part of what I do as well.
Dr. Eric:
All right. That’s a big problem as well. A lot of people have migraines, and might not relate it to the eyes. So, that’s good that you’ve mentioned that as well. So we’re going to be chatting about thyroid eye disease, we’re going to be talking about an integrative approach to thyroid eye disease. So, why don’t you go ahead and explain what thyroid eye disease is?
Dr. Rani:
Sure. So, many people don’t realize that there is a thyroid-eye connection. The connection is an indirect connection. So, basically, when the thyroid gets involved with autoimmune disease, for example, either Graves’ disease or Hashimoto’s disease, if there are autoimmune antibodies in the body, they can cross-react. Those antibodies that attack the thyroid can cross-react with tissues in the eye socket.
So, in the eye socket, we have the eye muscles. We also have fat in the eye socket and some other soft tissues. So, the receptors on those tissues in the eye socket look very similar to receptors on the thyroid gland. So, these auto-antibodies can attack these tissues in the eye socket and cause inflammation. When there’s inflammation either in the eye socket or even on the lids or the surface of the eye, that’s called thyroid eye disease.
Dr. Eric:
All right. So, you mentioned it could occur in either Graves’ or Hashimoto’s. Even though it seems to be a lot more common on Graves’ disease, a small percentage of Hashimoto’s patients also has thyroid eye disease, correct?
Dr. Rani:
Absolutely. I think a lot of people, like you said, they automatically associate with Graves’ disease hyperthyroidism, but it can be seen with either. Then there’s also a subset of patients who are actually what we call euthyroid, meaning they have normal thyroid function test, they have normal TSH, free T4, T3, but they have antibodies. Even patients who have normal thyroid function can also have thyroid eye disease if they have the antibodies floating around.
Dr. Eric:
When you say antibodies, there are different types of antibodies like thyroid-stimulating immunoglobulins…
Dr. Rani:
Any of them. So, TSI, thyroid-stimulating immunoglobulin, thyroid peroxidase antibody, thyroglobulin antibody, any of them can potentially cross-react with the tissues in the eye socket.
Dr. Eric:
Okay. That’s really interesting. So, what are some of the symptoms that you see with patients that come to your office with thyroid eye disease?
Dr. Rani:
Yes. So, interestingly, a lot of patients don’t even know that they have symptoms of thyroid eye disease when they come in. Many of them have perhaps been misdiagnosed as something else because symptoms can overlap with other eye conditions. So, I would say the most common symptom is probably dry eye. Many people with thyroid eye disease start off with a feeling of scratchiness, irritation of the eyes, like there’s sand in the eye or a grittiness.
Then what can happens is that there can be swelling of the eyelids. So, puffiness, particularly of the outer corners of the upper lid, sometimes even the lower lids can get very puffy, very swollen. Then as the disease progresses, there can be redness of the eyelids, redness of the surface of the eye, and also changes in the eyelid.
So, oftentimes, people develop what we call lid retraction, where the lids basically open up wider and it gives a look of a stare. We call it the thyroid stare because the eye is just wide open. It’s because the tissues in the eye socket have become inflamed and they become very tight. So, when the muscles get very tight, then the lids open up very wide. Then as the disease progresses, more serious types of symptoms can occur.
The next category would be bulging of the eye. So, people can get where one or both eyes may look more prominent, really just very inflamed. Their eye socket is very congested. Then if the muscles in the back of the eyes get affected, that can lead to a feeling of tightness, pressure. It can even lead to double vision because the eyes can get misaligned. So, if the muscles get very thick and swollen and congested, inflamed, the eyes may, for example, one eye may be higher, one eye may be lower or one eye may start to turn in a little bit, and give people double vision.
Then I would say the worst, I shouldn’t say the worst, but the most advanced form of thyroid eye disease is when there’s actually potential loss of vision, and that happens because the nerve, the optic nerve, which is in the eye socket, which is the nerve that connects the eye to the brain, that nerve can get, basically, compressed by all the congestion in the eye socket, so by the muscles, by the tissues that are all inflamed, and then people can actually lose vision. So, that’s at the other end of the spectrum, but there’s just a whole range of symptoms people can have if they have thyroid eye disease.
Dr. Eric:
Okay. As far as blindness, that’s pretty rare?
Dr. Rani:
It’s extremely rare. So, I just want to reassure everybody. Yes, it can happen, but it’s in less than 5% of people with thyroid eye disease that that actually happens. So, fortunately, the majority of people don’t progress that far. Most people with thyroid eye disease do have some lid changes, puffiness, dryness, surface issues, but not necessarily the other issues that I mentioned, but I did want to give people an overview of all the different types of manifestations thyroid eye disease can have.
Unfortunately, because many people come in with puffiness, and especially seasonal puffiness, for example, with allergies like we’re right in the middle of springtime right now, people may have puffiness of their lids, redness, irritation. So, many people with thyroid eye disease get misdiagnosed as eye allergies, which is dry eye. So, they get treated for that for months and months and months, and things just aren’t getting better with drops, et cetera. Ultimately, they end up being diagnosed with thyroid eye disease.
Dr. Eric:
So, you’re saying a lot of people think they just have dryness of the eyes, but they really have maybe a more mild case of thyroid eye disease?
Dr. Rani:
Yeah. So, patients themselves may think that it’s something else like dry eye or allergies and even doctors, even optometrists, ophthalmologists. There are physicians who just don’t necessarily think of it because there’s so much overlap between thyroid eye disease and other surface issues of the eye. There are some really characteristic findings that we look for, some very subtle findings that as a neuro-ophthalmologist I really look for, and that is really the lid retraction.
So, for example, normally, our lids should cover the white part of the eye. So, if you’re looking at someone, you shouldn’t be able to see on the top and bottom of the cornea. You shouldn’t be able to see any white, really. If you can see white, that means that there’s lid retraction, that those muscles are very tight and congested. That’s really one of the earliest hallmarks of thyroid eye disease is that lid retraction.
Dr. Eric:
Okay. That’s good to know because I also don’t want people to panic and think they have it because a lot of people do have dry eyes and we don’t want them to think that if they have dry eyes or they have allergies, and if they have Graves’ disease, it doesn’t…
Dr. Rani:
Yeah. Again, there’s overlap. Just because you have some of the symptoms doesn’t meant it’s from the thyroid because there are plenty of people who had Graves’ disease or Hashimoto’s who never developed thyroid eye disease. So, if you’re concerned about it, definitely just get it checked out by your eye doctor.
Dr. Eric:
Right. Why do some people, I don’t know if you know the answer to this, but why do some people with Graves’ disease develop thyroid eye disease while others don’t?
Dr. Rani:
I wish I knew the answer to that. That is the big mystery. I always try to ask my patients who come in with thyroid eye disease, “Were there any triggers? Did something change in your life, in your dietary habits, in your stress levels, in your exposure or was there anything new that you were exposed to like a new toxin or something in your environment?” The majority of people, there really isn’t a clear-cut trigger, but I will tell you that the cases I’ve seen, which are really very prominent, just cases that come on very quickly, many of those patients do report that they’re under a lot of stress.
So, I definitely think that there is some association between stress and cortisol levels and the onset of thyroid eye disease. I can’t tell you how many patients. For example, I had a patient who came in, a young woman who already had other autoimmune diseases. She had a couple of other autoimmune diseases diagnosed prior, but she just got married, so she’d been through planning a wedding, and then actually having the wedding, and a week later, she just came in and she had fulminant thyroid eye disease, and it was probably related to that stress that she had gone through, just with her life change and her celebration.
Dr. Eric:
One thing, also, just to let people know, again, if you think your Graves’ disease condition was caused by stress, again, that doesn’t guarantee that you’re going to develop thyroid eye disease. I learned this from self-experience because I had Graves’ disease in the past, been in remission for quite a while. Stress, definitely, was a factor in my case. Fortunately, I didn’t have thyroid eye disease, but who knows? Maybe I had a very mild case of thyroid eye disease, but it was never diagnosed. But stress, I think, is a big factor with many chronic health conditions.
Dr. Rani:
Yeah. I also just want to mention that this is really interesting. The timing of thyroid eye disease doesn’t necessarily correlate with thyroid function at all. So, for example, there are some people who have been diagnosed with hyperthyroidism, Graves’ disease years ago and who were under control, well-managed, really asymptomatic from a thyroid standpoint, who maybe 20 or 30 years later may start to develop eye symptoms.
So, it’s very interesting, and I wish I knew the answer to what really triggers the eye issues, but it can be very discordant in that way. They don’t necessarily run in parallel. Then there are some people who actually develop the thyroid eye symptoms first, and then their thyroid, their TFT, they thyroid function test, their TSH, free T4, T3 seem to be normal, and then years later, but they do have antibodies, years later, then they actually develop thyroid dysfunction. So, doesn’t correlate, and in the majority of cases, there’s really no rhyme or reason to it. It’s really a mystery, unfortunately.
Dr. Eric:
Yeah. One thing I have noticed, again, it’s not across the board with patients, but the higher their antibodies, especially in the case of Graves’ with the thyroid stimulating immunoglobulins, it seems like the more likely they are to have thyroid eye disease. Again, I’m not sure if that’s something you notice, but if someone has a TSI of 300-400, they’re more likely, it seems, to develop thyroid eye disease than a TSI that’s in the lower 200s, for example, or in the upper 100s.
Dr. Rani:
Yeah. I don’t know if the actual numbers have ever been looked at, but I’ve definitely seen it. Just clinically, I’ve seen it where many patients who have very active thyroid eye disease, their numbers are really sky high, and not just TSI, but also thyroglobulin antibodies and anti-TPO as well. Sometimes we can use those numbers to track them, to see how they respond to treatment. So, they are useful to follow longitudinally.
Dr. Eric:
Yeah. One problem is, at least with endocrinologists, is that a lot of endocrinologists won’t test the antibodies. They just will look at the thyroid function test, TSH, free T3, free T4, and it depends on the doctor. Some doctors will do it every single time. Some will just do it initially to diagnose the person with thyroid autoimmunity, but, yeah, I agree. I guess it depends. In some cases, especially it seems like more so with the TSI, I do see when someone’s improving, it seems like it gradually decreases.
Again, there’s always exceptions, but sometimes with TPO antibodies, and the thyroglobulin antibodies, again, in my experience, it seems a little bit more of a fluctuation, where sometimes it will more of a roller coaster pattern, but, again, that does depend on the person. Do you think everybody with Graves’ should get their eye checked or you just think if they start experiencing symptoms and there’s…
Dr. Rani:
Not necessarily, no, because as you mentioned, the vast majority of people who have autoimmune thyroid disease, whether Graves’ or Hashimoto’s do not have eye symptoms related to their thyroid, but what I would say is … So, for most adults, they should have an annual eye checkup. So, just go see a regular eye doctor annually, and if there’s anything on the exam, then your doctor may go look further, but there’s no need to go rushing to get your baseline eye exam immediately after having the diagnosis.
Dr. Eric:
All right. Good deal. So, let’s go ahead and talk about some of the natural treatments, integrative treatments. So, what are some of the things that you recommend from an integrative standpoint for those with thyroid eye disease?
Dr. Rani:
So, I would say, first and foremost, is their diet. Most doctors, endocrinologists and ophthalmologists alike probably are not asking their patients about their diet, what they’re eating, but what I found in many of my thyroid eye disease patients is that they’re extremely sensitive to certain types of foods, and they know that when they eat those foods, their eye symptoms tend to flare up or perhaps they’re in remission and then they have a flareup, which is unfortunate.
The food groups that most people are sensitive to happen to be food groups that many people with autoimmune diseases are sensitive to. So, it’s not just specific to thyroid eye disease, but that includes, for example, gluten. Dairy is huge. I mean, I know some of my patients with thyroid eye disease, even if they have a little bit of hidden dairy in their food by accident, let’s say they go to a restaurant, there’s a little bit of cheese in what they’re eating, automatically the next day they feel it. They know that they’ve had something that caused them to flare up. Those are the two that I usually recommend that my patients avoid. Also, soy products and nightshades. Those are the main food groups that I recommend that my patients avoid.
Then for many of my patients, also, particularly the ones who have a lot of lid puffiness, it’s important to also be careful around histamine foods…like foods that are rich in histamine. It’s actually interesting. One of my colleagues and I did a study, this was a while back, maybe 15 plus years ago, using antihistamines for thyroid eye disease, and we found that people who actually took oral antihistamines tended to do better with their puffiness and their swelling, et cetera, just over-the-counter antihistamines like even Singulair or Claritin, Zyrtec can make a difference.
So, just from a dietary standpoint, it’s important to try to keep a food diary because what you may be sensitive to may be very individual to you, and it may not reflect what everyone else may be sensitive to. So, just try to see if there are certain things that are in your regular diet that you may be sensitive to, and then try to experiment and take them out for a few weeks, at least three weeks, but sometimes I tell people, “If you really want to investigate whether you’re sensitive to a certain food or not, eliminate it for a good three months, and then try to reintroduce it very slowly and see if you have a reaction to it.”
I don’t know what your experience is with foods and Graves’ disease and autoimmune thyroid conditions, but that’s been my approach, typically.
Dr. Eric:
I agree. I mean, I don’t think there’s a perfect diet that fits everyone, but I do have my patient with Graves’ and Hashimoto’s or at least most of them start out with an autoimmune paleo diet, and I always mention it’s a starting point, it doesn’t mean that, again, there are some people that don’t do well with it, and that could be the case with any diet, but autoimmune paleo diet, of course, involves avoiding gluten and dairy and soy and the nightshades, but it goes a step further, like corn and pretty much all grains, you’re avoiding and legumes, and even eggs. So, there’s a lot of people who find it challenging. Again, it doesn’t mean that everybody has a problem with eggs, but some people do. So, it’s just a starting point, and then eventually, we reintroduce foods.
You mentioned that most endocrinologists don’t bring up diet, and not only that, but I’ve had patients bring up diets to their endocrinologists and most of them will dismiss it. They won’t be open at all to diet playing a role in Graves’ disease, thyroid eye disease, and same thing with other autoimmune conditions. Usually, they dismiss diet, but, yeah, definitely, I see a huge difference.
That being said, I will say that diet isn’t everything, but what I tell patients is you could follow a strict autoimmune paleo diet or whatever, even a regular paleo diet, and there is a good chance you’ll notice some great improvements, but sometimes you do need to dig deeper. There could be potentially other triggers. Stress, you mentioned before, blocking out time for stress managements, and sometimes infections, and we live in a toxic world, so chemicals could also play a role.
Actually, one other thing. It ties into the supplement. I was going to ask you about supplements you recommend, but regarding the antihistamine. I don’t know if you’ve experimented with natural antihistamines like quercetin, for example, rather than taking something like Claritin.
Dr. Rani:
Yeah. So, I usually recommend that people get it through their food. If they want, they can take a supplement as well, but I usually recommend quercetin-rich foods like red onions, and apples, etc, as an anti-inflammatory, and also turmeric. So, curcumin is a potent anti-inflammatory. So, I do recommend people add that to their diet. If they do take a supplement, make sure you take one that has black pepper, so it helps with the absorption of the curcumin.
I just wanted to mention you were talking a little bit earlier about toxins. So, we know that one of the biggest triggers for thyroid eye disease is smoke and smoking. So, smoke contains, at least cigarette smoke, probably has over 400 different chemicals in it that get released. So, we don’t know exactly which of those chemicals may be triggering the thyroid eye disease, but we know, for sure, that people who smoke have a much higher, much more aggressive form of the disease, and many of them end up with optic nerve issues and potential vision loss. So, going a little bit beyond just stopping, smoking cessation and avoiding smoke.
I also do recommend that people try to avoid fumes of any kind, even cooking fumes, barbecue fumes. These can be really irritating to the eye. So, if you’re cooking, I usually recommend that, especially for people who actually have active thyroid eye disease, that they wear goggles or some covering for their eyes to protect their eyes from that direct exposure to smoke, et cetera.
So, I don’t know if you’ve ever heard that before, but it’s something that is really important, and I think most ophthalmologists do recommend that to their patients, but, again, I go a little bit further beyond just the smoking part of it.
Dr. Eric:
I’ve not heard about that. I actually did write an article years ago about cigarette smoking in Graves’ because in the literature, there’s also not just in thyroid eye disease, but Graves’ in general, a greater incidence of Graves’ disease in those who smoke, but, yeah, as far as avoiding other fumes I did not know. So, that, again, is good to know. How about other supplements like vitamin D is important for a healthy immune system?
Dr. Rani:
Yeah. Absolutely. So, vitamin D, sure, many people have heard this said, it’s not just a vitamin. It functions more like a hormone in the body. It has many, many different roles in the body. One of them is immune regulation. So, it is important to have a healthy immune system, having enough vitamin D, and most of us are vitamin D deficient, especially during the colder months of the year. So, you want to supplement with vitamin D.
I typically recommend my patients try to keep their vitamin D levels around 60 to 70. Now, of course, just check with your doctor to make sure that that’s okay for you. Some people like to go higher, but if you do go higher, you just have to be concerned about calcium deposition in your coronary arteries and you don’t want to develop heart issues because of high vitamin D levels, but you definitely want to, if you’re low or even on the low side, you want to just boost your vitamin D levels.
The other thing, the other mineral is selenium, which I’m sure many people are familiar with when it comes to the thyroid. So, selenium supplementation has been actually studied in thyroid eye disease by a European group, and it’s been shown to help reduce some of the congestion in the eye socket, and the inflammatory response. So, for selenium, the dose is anywhere from 100 mcg twice a day to 200 mcg twice a day is the typical recommended dose.
Dr. Eric:
All right. Well, what do you say about someone who would prefer to get their selenium through foods like Brazil nuts, for example?
Dr. Rani:
Yes. That’s a great resource as well. So, a handful of Brazil nuts, maybe two or three Brazil nuts are wonderful source.
Dr. Eric:
Yeah. The one thing I will say about that, I brought it up because a lot of people, whenever I bring up selenium, they’ll ask about that, and I agree that Brazil nuts are a good source of selenium, but you never know how much you’re getting in a specific Brazil nut. So, it could be anywhere from 10-20 mcg to 70-80 mcg. So, yeah. I am of the mindset you want to do as much through food as possible, but, honestly, if someone is dealing with active thyroid eye disease, usually I will recommend supplementation.
Dr. Rani:
Yeah. In terms of the nutrient content of foods, I just also wanted to bring up that the foods that we get now they’re not grown in the same type of soil that foods were grown decades ago. So, our soil is actually depleted of so many minerals now just because of changes in agricultural practices. So, even though you may think you’re having a wonderful diet and super healthy, probably the nutritional value of that produce, both fruits and vegetables, is lower than it really should be, especially as you mentioned. If you have active conditions, it’s probably best to take a supplement. Now, if you’re doing well, you probably don’t have to take a supplement, but if you actually have symptoms, it’s probably a good time to start.
Dr. Eric:
I agree. Even if you eat organic, it’s important to mention, because a lot of people will be like, “Well, if I’m eating organic,” but it’s still not the same as 10, 15, 20 years ago. So, active versus inactive thyroid eye disease, how long on average, I know it varies, but what do you see as far as active thyroid eye disease lasting?
Dr. Rani:
So, the active stage of the disease is when people actually have a lot of congestion. So, their eyelids, their eye sockets, that’s when people develop the bulging or it’s what we call proptosis is the medical term for bulging of the eyes. It usually lasts anywhere from two to three years, probably closer to two years in most people. It’s very difficult for patients during this time because they’re uncomfortable. Their vision is affected. They see blurry because of the surface issues, the dryness, etc. They have pressure. They may see double.
What people need to realize is that you have to wait the active phase out. Of course, there are things you can do to try to modulate that, but it does run a course of about two years, and you really have to be patient. Then the disease usually, some people call it like it burns itself out. It doesn’t really burn itself out, but it basically becomes stable, and then a lot of the edema, the swelling starts to go away. So, then the puffiness resolves a little bit. Sometimes the bulging improves as well, and then people may have what we call, again, the stable … Some people call it the fibrosing stage of thyroid eye disease. Fibrosing basically means that it’s scarring, but it doesn’t necessarily have to be scar tissue. It’s just not as active inflamed and edematous as the active phase, otherwise.
I think education is really important and just setting people’s expectations that, “Okay. It’s active right now. Let’s see how things are going to go,” and it may take a few years before things really start to quiet down.
Dr. Eric:
How about conventional treatments? So, you spoke a little bit about diet and supplementation. When is conventional treatment necessary for thyroid eye disease?
Dr. Rani:
Yeah. So when there’s a risk of vision loss is when, as ophthalmologists and neuro-ophthalmologists, we become very concerned. There are a couple of different mechanisms where people can develop vision loss. So, one is optic nerve compression that I was saying. If there’s a lot of congestion in the eye socket, the optic nerve can get compressed. People can have peripheral vision loss, central vision loss, color loss. So, that’s definitely an indication for medical treatment.
Also, if the eyes are very prominent, if they’re really bulging, and the eyelids just can’t close properly, then the cornea can get very dry. It can get so dried out that you can actually develop corneal ulcer because the cornea is just not lubricated properly. People can develop infection, which is an ulcer, and even scarring. So, those are the two real main indications for when medical treatment is really indicated, and usually in an emergency type situation.
I like to tell my patients, “Well, I approach this in an integrative way. So, yes, of course, we’re going to try the nutrients, the nutrition first and the supplements, and the conservative measures like using drops and using cool compresses, and using humidification, and essential oils. We’re going to try all of that, but if it ever gets to the stage where your vision is at risk, we’re not taking any chances.” In that situation, then, yes, it really is so important to be started on an agent that will help to decrease the swelling and protect your vision.
The typical treatment is steroids, and I hate to say that, but that really is. Unfortunately, we don’t have anything. Well, I’ll take that back. So, we do have something, which we can talk about, but prednisone in the acute setting is really what’s necessary to help preserve the optic nerve, and in cases where people have actually lost vision or significant vision, we actually sometimes admit them to the hospital and put them on three days of IV steroids. If it’s not so bad, we may just try oral steroids first just to get the swelling to go down, and then people can be tapered off the steroids over time, but up until now, that really has been the mainstay of treatment.
Then recently, actually last January, the FDA approved a medication. This is really the first FDA medication for thyroid eye disease, specifically for thyroid eye disease. It’s called teprotumumab, which is Tepezza, and it’s a biologic agent. Biologic basically means that it helps to modulate the immune system. What it does is it actually … So, what happens in thyroid eye disease is that a particular receptor gets activated called insulin-like growth factor receptor IGFR. So, Tepezza blocks that receptor. So, it blocks that activation. So, a lot of the changes that happen in the eye socket don’t happen.
So, Tepezza is given as an infusion. It’s usually given over the course of 24 weeks, basically, eight treatment every three weeks. So, 24 weeks of treatment. For patients with really active disease, where they have significant vision issues, maybe double vision, a lot of bulging of the eyes, swelling of the eyelids, it really has been extremely useful, and in many patients, really transformational for their care. Again, I remind patients that, yes, we try to approach things naturally whenever possible, but in some cases, we do have to really rely on our medical treatments and a little bit more aggressive treatment.
So, it is part of the toolbox, and it is just something to consider. Maybe have a discussion with your ophthalmologist or your neuro-ophthalmologist about if you may be a candidate and if you are not responding to natural treatments.
Dr. Eric:
As far as I know, it’s only available in the United States?
Dr. Rani:
I think it’s available in other countries as well. I do want to say it’s available in Europe.
Dr. Eric:
At least Canada, I mean, there might be other biological agents in Canada…
Dr. Rani:
Yeah. So, I’m not sure about that, about other countries, but one interesting thing that happened in the US was the drug got approved in January of 2020, and then the COVID pandemic hit, and then once the vaccines were being manufactured, the factory where they actually made Tepezza had to switch over. So, it was mandated by the government to switch over to making the COVID vaccine. So, that became a shortage of Tepezza in the country for quite some time, actually, and it wasn’t until I think about two weeks ago that it became available again. So, there were quite a few patients who were mid-treatment, who actually had to interrupt treatment.
Dr. Eric:
I have one of those patients. I’ve had a few patients. One of them was able to complete the course, fortunately, but then another one, yeah, had to get it interrupted, which was unfortunate.
Dr. Rani:
Yeah, and we don’t know now. If you’ve had been in that situation where you’ve not been able to get the medication or that you basically have to start again from scratch, I’m not really sure how that would work. The other medicine, it’s also biologic that has been used for thyroid eye disease. It’s something called rituximab or Rituxan. That’s actually a much more widely available drug. It’s also given as an infusion, but it’s given every six months. So, in countries where Tepezza may not yet be available, Rituxan is the next best option.
Dr. Eric:
All right. Now, that’s good to know. Then with Tepezza, again, I haven’t had a lot of patients get it, just a couple so far, but one person who was able to complete the course said that it greatly helped with the bulging, the lid retraction, but really didn’t help with the double vision. I don’t know if you’ve seen that or if, again, just varies depending on the person.
Dr. Rani:
Yeah. So, the clinical trial, actually, looked…the primary endpoint was bulging. So, Tepezza helped improve bulging by I think it was about 3 mm or so, but they found that there were some improvement in the double vision, but not enough to be fully restorative in terms of resolving the double completely. Ultimately, let’s say if you’re a candidate for Tepezza and you do Tepezza for 24 weeks, your doctor will assess how effective it was, and then some people actually need a second course of the drug. So, it’s now actually available as a second course.
Also, initially, with the study, they looked at patients who were only in the acute phase, only within nine months of having had symptoms, but now, I think there is a recent study that was published that showed that it’s also effective for people who have chronic thyroid eye disease. So, in that stable progressive phase, you may still be a candidate for Tepezza with the hopes that with some improved swelling, congestion in the eye socket that maybe the double vision may improve as well, but the double vision can be quite challenging to manage.
Clinically, we always start with the most conservative therapy there, which is prism therapy. I’m not sure if your audience is familiar with prisms, but prisms are basically, they’re optical devices that you can put on to glasses, and they basically realign the image onto your eye. So, it’s not realigning the eye itself, but it’s realigning the image so people don’t see double.
So, that’s very effective for many people to use a prism, but, ultimately, if the prism doesn’t help and also as things stabilize, if people still have double vision, then a surgery may be what’s really necessary to get rid of the double vision, but that’s the last resort. Surgery is really not something that we think of unless people are very refractory, they’re not improving to other standard treatments.
Dr. Eric:
Okay, and surgery, typically, is not done in the active phase, correct.
Dr. Rani:
Absolutely not. No. For double vision, so my typical rule of thumb is, first of all, I work with the patient’s endocrinologist to make sure that their thyroid is stable. So, once their thyroid is stable and if they’re on medication, once that’s stable for at least six months, then the clock starts ticking. Then I wait another six months to make sure that their double vision is stable also. The reason is because if someone has double vision and we operate too soon, and things are still changing, they’re dynamically changing in the eye socket, then that surgery may become ineffective because the double vision may come back or it may go the other way. So, it really is important to make sure that everything is 100% stable before having any kind of surgery for double vision. So, patients, it’s really challenging and it’s really difficult for some people to have to know that they have to wait that long, but, really, it’s in their best interest that they should be waiting.
Dr. Eric:
Okay. That makes sense. So, I think this might be my last question, radioactive iodine. So, radioactive iodine, it seems like in the research there is a little bit of controversy, as it seems like it can potentially cause or exacerbate thyroid eye disease. So, a lot of endocrinologist won’t recommend radioactive iodine in thyroid eye disease patients. So, where do you stand on whether someone should receive radioactive iodine if they have thyroid eye disease?
Dr. Rani:
Yeah. So, what happens with radioactive iodine is, basically, the thyroid tissue is destroyed. A lot of thyroid hormone is released, and also the antibodies are released. That can actually create a thyroid storm in some patients. Even if they don’t have a thyroid storm, if you have a sudden release of a lot of hormone and antibody, the antibodies can, again, cross-react in the eye socket and trigger active thyroid eye disease. Whether they have it before or not, the patient may suddenly develop eye symptoms.
So, what I do is basically let the patient know that they should really work with their endocrinologist to first decide what treatment is best for them. Should they be on a medical agent like methimazole or PTU or do they really need radioactive ablation? If they do, then what I usually recommend is a short course of steroids starting one week before and two weeks after to prevent any exacerbation or activation of thyroid eye disease.
I dose it based on the patient’s weight. So, basically, what I do is I take the patient’s weight in kilograms. So, let’s say somebody is 70 kilos, you take half of that, so it would be 35, and I give them 35 mg of prednisone starting one week before the radioactive ablation and continuing two weeks after, and then that’s it. Then they don’t need anymore. So, that carries them through or covers them for that time.
I have to say, knock on wood, that with that regimen in all my patients, and I’ve seen thyroid eye disease patients for well over 20 years, none of them, knock on wood, have had activation of their thyroid eye disease after having had RAI. So, it’s just something to consider, and make sure you talk to your doctor about it whether they’re on agreement and they can maybe prescribe it for you if you really need to have that radioactive iodine.
Dr. Eric:
Okay. That’s interesting. Again, I try to encourage people if they can, obviously, I can’t tell them what to do and what not to do, but in my opinion, in most cases, radioactive iodine should be a last resort…radioactive iodine and thyroid surgery. So, my goal is to try to address the cause of the problem, but I think it’s important to talk about both sides because sometimes conventional treatment is necessary. So, I just wanted to get your opinion on that.
Dr. Rani:
Yeah. I agree completely. If you can manage it naturally, that’s the best way to do it, but at some point, if it’s really causing a detriment to your health, and it’s not being well-controlled with other treatments, then yes, an intervention is necessary…either thyroidectomy or partial thyroidectomy or RAI. The same holds true for surgeries. So, I do the same for my surgical patients. I put them on steroids for three weeks before and after. I do the same thing.
Dr. Eric:
Okay. So the same routine whether it’s surgery or radioactive iodine. All right. One more quick question that’s related to this. Can someone have mild thyroid eye disease but not know it? Do you just recommend it if they have overt thyroid eye disease or as far as…
Dr. Rani:
If a patient has been seeing me and I know that they have mild thyroid eye disease, I would absolutely recommend the prednisone, yeah. I guess what you’re asking about is what if they haven’t been formally diagnosed, it’s probably best that if you’re considering getting it done or if your endocrinologist is recommending it, go see your eye doctor. Again, see your ophthalmologist and preferably a neuro-ophthalmologist if you can get in to see one, and just get their idea, their opinion on whether it’s active or not. If there’s any indication it’s active, it’s probably best to be pretreated.
Dr. Eric:
All right. Great advice. Thank you for that. This was awesome. Thank you for all the information. So, before we dive into questions, I want you to briefly mention your masterclass that you’ll be having, and I’ll put up here, just if I could display it here, there we go.
Dr. Rani:
Yeah. Wonderful. So, thank you. I really enjoyed our conversation. There’s just so much to talk about. We could probably keep talking for an hour or so about thyroid eye disease. So, what I’m going to be offering is a masterclass, the thyroid eye disease masterclass an integrative approach, where I talk about specifically what are the signs and symptoms of thyroid eye disease, what are the natural ways you can try to combat thyroid eye disease.
Actually, in my practice, I use something called the thyroid eye disease diet or TEDD. So, I would be sharing that in the masterclass. Also, the specific types of supplements and botanicals that I found to be most effective for people with thyroid eye disease, as well as some of the essential oils that I use for my patients. In terms of dry eye, what are the best natural therapies for dry eye beyond just using drops, lubrication. What else can you do in your home environment to help with thyroid eye disease?
Also, just talking about some of the more medical treatments that we touched upon a little bit today. What are the indications? Also, lifestyle things you can do to decrease your risk of activation or worsening of thyroid eye disease.
So, I’m going to be offering this along with Dr. Eric. We’re going to, hopefully, do this together as a single masterclass. There’s only one module. It’s going to be tentatively on June 23rd, which is a Wednesday at 8:00 PM Eastern. Hopefully, if you’re interested, you can register. If you’re watching and you do decide to register, we are offering a 50% off discount. So, the normal price of the masterclass is $99, so then it would be $49.50. So, if you can go ahead and register, I think we’re going to have that available for the next week or so. Is that right, Dr. Eric?
Dr. Eric:
Yeah. I think we decided on a week from Friday, May 7th or, actually, today is Friday. That’s right. So, a week from today.
Dr. Rani:
A week from today, yeah. If you’re interested, please register early. There is limited capacity. There’s only 100 participants that we can have in the masterclass. So, please consider registering.
Dr. Eric:
All right. Wonderful. Well, you’re ready to answer some questions? Looks like we have a lot of questions.
Dr. Rani:
Absolutely. Okay. Wonderful.
Dr. Eric:
All right. Oh, and one other thing about the class also, if for any reason if someone is unable to make it, it’s hard to pick a time that works for everyone, but this will be recorded. So, if for any reason they can’t make it, they could always watch the recording?
Dr. Rani:
Absolutely. Also, I’ll make available downloadable PDF resources, so not just the thyroid eye disease diet, but my resources on how to manage dry eye, eye allergies with thyroid eye disease, digital eye strain, which is I know a big concern of many people is we spend hours looking at a screen. So, how can we help to manage that with thyroid eye disease. So, there’d still be a lot of resources available.
Dr. Eric:
All right. Good deal. Looking forward to that. So, let’s go and we’ll try to get to as many questions as we can. So, Tammy, it looks like myasthenia gravis. Do you have any experience in your practice?
Dr. Rani:
Absolutely. I’m so glad, Tammy, that you brought this up because … So, for people who are not familiar with myasthenia gravis, it is also an autoimmune disease. Myasthenia gravis and thyroid go hand-in-hand or at least thyroid eye disease and myasthenia gravis go hand-in-hand. What myasthenia does is it can cause double vision, and it can cause droopiness of the lids, so opposite of what thyroid eye disease does. So, thyroid eye disease causes wide open lids. Myasthenia gravis causes drooping.
So, a certain percentage of patients with thyroid eye disease will have coexisting myasthenia gravis, and a larger percentage of patients with myasthenia gravis will also have thyroid eye disease. So, definitely, if you have any of those symptoms that are a little bit unusual for just thyroid eye disease, ask your doctor about whether it could be myasthenia gravis or not, and get tested.
So, myasthenia gravis, there’s a couple of different tests for it. There’s a blood test looking for the antibodies. That’s the easiest way to test for it, but there are many people who have myasthenia where it affects the eyes, where their blood test is negative, and we have to go a little bit further. We have to dig a little bit deeper to figure out if someone has it or not.
The last thing I’m just going to mention about myasthenia gravis is that it causes weakness of the eye muscles, and that’s called ocular myasthenia or OMG, but there’s also a chance that other muscles in the body can get affected by myasthenia gravis as well, so your arms, your legs, breathing, swallowing, voice. So, definitely, if you have any symptoms of weakness, and you have a history of thyroid eye disease, definitely talk to your doctor and consider getting tested for myasthenia gravis.
Dr. Eric:
All right. Great. Thank you for that. Then May here has a question, “Do you have any advice for tearful eyes?”
Dr. Rani:
Yeah. So, there are many reasons why your eyes may be tearing. Actually, the most common reason is because the eyes are dry. It may seem very contradictory, “Why are my eyes tearing if they’re dry? That just doesn’t make sense,” but I’ll explain to you why that is. So, first of all, what happens is the surface of the eye dries out, and then we have a large tear gland up here called the lacrimal gland. In response to that dryness, it overproduces tears. So, people end up tearing when they have dry eye.
So, the way to deal with the tearing is to first treat the dry eye, and if you do that appropriately, then usually the tearing also improves as well. Then, again, with thyroid eye disease, there are many other reasons why people may have tearing. For example, eye allergies can also case tearing. Then just swelling of the surface of the eye can also cause tearing and even mucous discharge. So, a lot of other things can happen with thyroid eye disease that people should be aware of.
Dr. Eric:
All right. Jenny, you might have to clarify. I’m not sure if you mean thyroid hormone levels or sex hormone levels. Anyway, if you can maybe further elaborate, if Jenny could elaborate, but then Kelly here asks, “Can you have thyroid eye disease and not be sure?” which we answered that early on. Someone can have a mild case and it not being diagnosed, correct?
Dr. Rani:
Yes, and the best way to make the diagnosis is to get those thyroid auto antibodies done. Really, I advocate to get them done. So, your endocrinologist may say, “Oh, we don’t need them. We just need these TSH, free T4, T3,” but I would really strongly push to get the rest of the antibodies done because that will confirm the diagnosis.
Dr. Eric:
All right. Great. So, this is a bit of a long one, “Recently been diagnosed with demodex in my eyelids. Do you think this could be a sign of TED? Also, do you know how long it could take for demodex to go away? Can it spread to my scalp, nose, other parts of my body?” So, maybe, I don’t know if you could…
Dr. Rani:
Sure. Yeah. So, demodex is basically an infestation of the eyelids of, really, lice. So, we can get lice around the follicle, the hair follicle of the eyelash. So, it’s independent of thyroid eye disease, but it can certainly case irritation, inflammation. The best way to actually treat it is to really just smother the infestation. So, basically, you just goop up your eyelids at nighttime with an ointment, whether it’s just a regular ointment, eye ointment or an antibiotic ointment, and it basically just gets rid of those organisms.
Dr. Eric:
Okay. All right. Just a comment here, “After miscarriage of my twins, I developed Graves’.” I’m so sorry about that. Then Jenny, “I took an allergy test and histamine showed positive.” You mentioned earlier how sometimes the antihistamines can help with thyroid eye disease.
Dr. Rani:
Yeah. One of the things, as an integrative practitioner, that I also try to do for my patients is I do order food sensitivity testing because sometimes it’s really hard just to do a food diary to try to figure out what you may be sensitive to. So, sometimes it’s actually good to get a whole panel done so that you really know which foods you should try to stay away from. So, this is not IgE testing. This is IgG testing. So, I would again advocate for that. Talk to your practitioner about it. Ask if you can get it done, and it really will give you a lot of insights into the foods that your body may be sensitive to. I don’t know if you do that, Dr. Eric, in your practice, but I found it pretty effective.
Dr. Eric:
Yeah. I mean, I have done it. Sometimes I’ll do it. Every practitioner is different. So, I usually start people off with elimination type diet, and do an elimination and reintroduction. It’s not perfect. I find IgG testing … I don’t think there’s any perfect test or perfect method, but I usually reserve it if someone is not improving and we suspect … because we usually, with the part of an elimination diet, we’re having them eliminate pretty much just all the common allergens and things that could be causing inflammation. Of course, there’s always exceptions. Someone could be still reacting to something that they haven’t eliminated.
Speaking of food, so this person asked, “Why nightshades?” I don’t know if you want to talk about it or if you want me to talk about it.
Dr. Rani:
So, I’m not an expert in why nightshades. I mean, I have my theories, but I would love to get your opinion on it if you have some insights.
Dr. Eric:
If you visit my article, I’m sorry, my website, naturalendocrinesolutions.com. You search for nightshades. Essentially, there’s lectins and other compounds in the nightshades that potentially could be inflammatory. They’re not inflammatory necessarily in everybody. They can also potentially interfere with gut healing when someone is dealing really with any chronic health condition, but especially with autoimmunity. You really want to focus on healing the gut, but, yeah, that’s the main reason why you want to avoid nightshades.
Let’s see. Do you see anything as I scroll down? It looks like a lot of these are just comments and not questions. So, Stacy, “What’s good for the pain? I have terrible back pain from fibromyalgia.”
Yeah. It’s a little bit not necessarily related to the topic, but inflammation is huge. I mean, with fibromyalgia, also nutrients, mitochondria, mitochondrial dysfunction, which are nutrient-driven. So, again, as we discussed before, even though you want to try to eat whole healthy foods, in my experience, when someone has nutrient deficiencies, usually, supplementation is required.
Then Dr. Rani mentioned other things that could help with inflammation like turmeric, curcumin, CBD oil, a lot of people are using these, but with that being said, you also want to address the cause of the problem. So, is it a nutrient deficiency? Do you have a chronic infection? Are you eating an inflammatory food such as gluten or dairy? So, there are things that you could take like the curcumin, like the CBD oil, and there are other things you could take for pain. Also, you want to try to address what’s causing the pain.
All right. “How much vitamin D daily?” This does depend. In my practice, and most practitioners will test vitamin D levels, 25-hydroxy vitamin D, and then based on the results. As Dr. Rani says, I like to see a minimum above 50, but some like to see between 60 and 80. My levels is usually upper 50s, lower 60s. As Dr. Rani said, you don’t want it to be too high. So, probably a good idea to work with a practitioner just to make sure you’re not taking too much vitamin D. Then, of course, try to get as much sun as you can as well.
All right. This person, the salt question. So, I mean, I usually recommend, I think, Celtic sea salt is fine, natural sea salt. I think Himalayan salts, for years, I’ve mentioned that it was fine, but recently, there’s been a book that says that Himalayan salt is higher in iodine, which I … I’m not sure. I’ve had people take Himalayan salts without a problem, but Celtic sea salt seems to be pretty safe to take.
Dr. Rani:
Yeah. I’ll just add a comment about salt intake. I do notice that when my patients do report that they’re on high salt diet that their eyelid swelling is worse. So, I usually do salt restrict my patients if they have active Graves’, just as an aside since we’re talking about salt.
Dr. Eric:
Hmm, interesting. So, even like sea salt?
Dr. Rani:
Yeah, especially, I mean, people will notice it especially after they have been sleeping. They tend to have a lot of because they’re lying flat. So, all that congestion, the fluid accumulates in their lid. So, really, it’s just more puffy, but then when they reduce their salt intake or eliminate it completely as much as possible, then they have less swelling in the morning. So, it’s just something you can experiment with to see how your salt intake may impact your thyroid eye disease.
Dr. Eric:
Besides the sea salt, there’s salts in everything. Anything that’s packaged or processed, I mean, if you’re buying fresh fruits and vegetables, you don’t have to worry, but anything that pretty much comes packaged will have sodium. So, that’s also worth mentioning as well.
By the way, Dr. Rani, how are you on time? Do you have a few minutes?
Dr. Rani:
Oh, yes, I can. Yeah, I’m good.
Dr. Eric:
Okay. All right. So, Emem here says, “I’ve read that selenium supplementation can make iodine deficiency worse. With that in mind, although high dose iodine can aggravate Graves’ disease, do you recommend that Graves’ disease patients who want to try selenium for thyroid eye disease also supplement with a small amount of iodine?
I’d love to get your feedback, but I will say that, there’s definitely a lot of controversy with iodine and thyroid health. So, I was one of those that was on the bandwagon years ago. I took high dose iodine. I did fine. I did really good with iodine. So, I was one of those people that was able to tolerate it well. Early on my practice, I would have everybody do urinary testing for iodine, and for those who were deficient would put people on iodine. A lot of people did okay, but not everybody. Sometimes it does seem to make people worse.
Again, I’ve written about this in articles as well. So, I’m not anti-iodine, but I’m definitely cautious when it comes to iodine. So, even if someone is deficient in iodine, even if they’re deficient, I’d be a little bit cautious about having them supplement with iodine, but, especially, just randomly, take iodine. I can’t say it’s something I recommend to my patients, but, again, I’d like to hear what you have to say.
Dr. Rani:
Yeah. I also typically don’t recommend it. If it’s naturally present in foods, then that’s fine, but I wouldn’t take an extra supplement. Now, in terms of the other question, I think maybe she was getting at whether the iodine could be a competitive inhibitor of selenium. I think maybe that was the other question was. I don’t know. I don’t think that they have the same function in the body. Selenium has many different functions. So, I don’t think that they would be a competitive inhibitor of each other.
Dr. Eric:
I would agree. Yeah. I skipped over that, but I haven’t heard where taking selenium will worsen an iodine deficiency. All right. Someone is using eye pressure drops it looks like.
Dr. Rani:
Yeah. So, I’ll just talk a little bit about eye pressure if we have a few minutes.
Dr. Eric:
Sure.
Dr. Rani:
So, one of the other manifestations of thyroid eye disease is because there’s so much pressure, congestion in the eye socket, the eye pressure can go up. Eye pressure is different than blood pressure. It’s actually the pressure within the eyeball itself. So, many people, it’s something that we worry about because if their eye pressure goes up, then they can have damage to their optic nerve or a type of glaucoma.
So, certainly, if you do have orbital symptoms or eye socket symptoms, get your pressure checked by your eye doctor. If it is elevated or if it’s quite elevated, usually in the 30s or so, we do start patients on drops. Hopefully, once their swelling improves, their congestion improves, patients can come off the drops, but it’s more of a protection that patients need the eye drop for.
Dr. Eric:
Okay. Cool. Thank you for that. How about this question? “Would you recommend Tepezza if the proptosis is only 2 mm difference?”
Dr. Rani:
So, it’s FDA-approved for greater than 3 mm. So, 2 mm is actually, glad you brought this up, it’s actually within the range of normal. Many normal people have a difference in their eyes of 2 mm, but three or more is typically what we attribute to thyroid eye disease. So, right now, there are very strict guidelines on whether insurance carriers will cover Tepezza, and one of those guidelines is the amount of proptosis or the asymmetry in proptosis.
Dr. Eric:
All right. Thank you for that. “Could you talk about the pros and cons of Tepezza versus the second infusion option that was just mentioned?”
Dr. Rani:
Sure. So, the second infusion option is Rituxan. It’s R-I-T-U-X-A-N or rituximab. So, rituximab has been used. It’s a slightly different biologic. It works on B cells. It’s a CD20 inhibitor. Rituxan has been used for many, many years. It’s been out there for many years, for many different inflammatory conditions ranging from a lot of eye conditions that we use it for.
So, it has more data behind it. In terms of its actual benefits for thyroid eye disease, it’s never been formally studied head-to-head with Tepezza, so we don’t know if one is better than the other. They’ve been independently looked at in clinical trials. So, again, we can’t really answer that question whether one is better than the other.
In terms of side effect profile, I think Tepezza has a very low side effect profile. Probably, Rituxan has a couple more side effects, but it is less frequent. So, Tepezza is every three weeks versus Rituxan is every six months. So, there’s a big difference in terms of the frequency of the treatment.
Dr. Eric:
So, a single infusion every six months?
Dr. Rani:
Single infusion every six months. So, there’s a first dose and then two weeks later, there’s a second loading dose, but then after the second dose, it’s every six months.
Dr. Eric:
Okay. Does everybody need that? After six months, a lot can change.
Dr. Rani:
A lot can change, yeah. So, usually, people need maybe one or two cycles of it before they start to respond, but then there are other conditions where people need it really indefinitely every six months. There are other autoimmune conditions that I manage that affect the eyes, where people do need it a lot longer.
Dr. Eric:
All right. Thank you for that. This is just someone thanking you for this.
Dr. Rani:
You’re very welcome. Thank you for tuning in.
Dr. Eric:
Yeah. We appreciate everyone tuning in and asking questions. Then Julie here asks, “I had very mild thyroid eye disease when I had two doses of radioactive iodine five years ago. It has become very active and much more severe. What can I do to help it?”
Dr. Rani:
Yeah. So, it really depends, again, on what your specific symptoms are, whether it’s puffiness, whether it’s bulging, double vision, dryness. So, certainly, talk to your doctor about the stage that you’re at, whether it’s still in the active phase or maybe now hopefully after a couple of years, if this all started five years ago, hopefully it’s becoming a lot more transitioning into that more quiescent chronic stage. Talk to your doctor about the options whether it’s drops, supplements or something perhaps a little bit more involved like either medications or even surgery may be an option for you.
I would also suggest perhaps considering taking the masterclass that we talked about because I will talk about, okay, for this stage, these are the best options, and then if it progresses to this stage, these are the best options, and then so on. So, I will break that down in the masterclass.
Dr. Eric:
Great. I’ll bring that up quickly again. Are you good for maybe another three questions?
Dr. Rani:
Sure. Sure.
Dr. Eric:
Okay. Great. So, Jenny is just saying thank you and thank you, Jenny.
Dr. Rani:
Thank you. You’re very, very welcome.
Dr. Eric:
All right. Let’s see. Another, Debra, “Had radioactive iodine two years after thyroid eye disease, Graves’ diagnosis. PTU, methimazole sadly didn’t work for remission. Liver could be damaged at two years on these meds. Took prednisone before radioactive iodine, and after largest radioactive iodine dose allowed without hospitalization. Helped reduce more bulging, then waited to have six reconstructive surgeries in two years.” Wow. “Still get kenalog injections into orbit when they swell or hurt years later like steroid direct into affected area than oral steroid pill and bounce-”
Dr. Rani:
Oh, I’m so sorry to hear that, Debra. Yeah, you’ve been through so much. Again, I haven’t examined you. I haven’t seen you, but from what you’re telling me, it seems like it’s still active despite having the surgeries and the steroids, etc.
You may be a candidate for Tepezza even though it’s been some time. So, definitely talk to your doctor about that option just to get everything to calm down because there’s still some activity there it sounds like. It’s not great getting kenalog injections into the eye socket because that type of a steroid injected into the eye socket, it can cause problems. It can actually lead to high eye pressure, glaucoma even, thinning of some of the muscles in the eye. So, definitely talk to your doctor about the options.
Dr. Eric:
Yeah. I was just going to ask you about the kenalog injections, but you’ve answered the question, so very cool. All right. We’ll go through two more questions. So, “My anti-thyroid peroxidase, anti-TPO levels are 154, not the best, but I manage to lower them. Before they were 195. Still, my right eye is bulging. I know when my levels are not normal because my right eye lets me know right away.”
Yeah. So, again, I will say, and Dr. Rani could also give her feedback, but of course, I don’t know what you did as far as lowering them, but try to do as much as you can through diet and lifestyle. Again, maybe attend the masterclass as well. Tepezza might be an option as well. Again, I think even with that, I will say with the Tepezza, again, I would say probably more for moderate, severe cases of thyroid eye disease, and then also from what I understand, it’s also very expensive for those who don’t have insurance, too.
Dr. Rani:
It is.
Dr. Eric:
Yeah. So, it’s not an option for everyone, unfortunately.
Dr. Rani:
Yeah. So, just to provide a comment there. It’s wonderful that you’re so in tune with your symptoms. Many people, they may dismiss certain symptoms, but it’s wonderful that you’re in tune and you know that, you feel, you can tell from your eye status what your antibody levels are. So I applaud you for that because it’s important to just be aware that you can convey to your doctor what’s going on better and hopefully get treatment that you need if necessary.
I also just want to say about the Tepezza. So, it is expensive. It’s estimated that one course of treatment costs $200,000. So, that’s eight infusions. So, I don’t know whether the price will be going down at any time in the future, but right now, it is at that level. So, it is sometimes challenging for patients to get the authorization that they need to get the medications, but I do think that the company offers some patient assistance programs, so certainly if you qualify based on the criteria.
I didn’t mention this earlier, but I just wanted to show you all. I don’t know if you can see this here. The CAS score is Clinical Activity Scale. Basically, it’s a guide here. I don’t know if you can see here. I’m not quite centered here, but there is a rating scale that we use to really determine how active a person’s thyroid eye disease is. Really for Tepezza to be approved, people have to meet some of these criteria based on their CAS score or worsening of their CAS score.
So, this is something that, again, you can talk to your eye doctor about assessing that score to see if you may qualify for Tepezza and also whether your insurance will cover it or not.
Dr. Eric:
I could also include that sheet as well when I send out the email with the link to the recording.
Dr. Rani:
Absolutely. Yeah. So, I’ll scan this in and create a PDF of it and then we can include that with the link.
Dr. Eric:
Yeah. Let’s get to one more question. So, Lily here and, again, if we didn’t get to your question, I am so sorry, but we might do another one of these in the future. Again, definitely consider joining the masterclass. So, Lily asks, “Hello, Dr. Banik. Thank you for taking my question. I was diagnosed with Graves’ disease in 2018, and my very first symptom was thyroid eye disease. Before, I had bulging eye in the left. I developed heavy eye bags below my eyes first. My blood test has been normal for T3, T4, and TSH for a year now. So, my bulging eyes has gotten better, but the heavy eye bags are still there. Are the cause for the bulging eyes are the same cause for the eye bags? Will the eye bags improve later or will they not?”
Dr. Rani:
Yeah. Great question. So, many people actually experience this where it’s not just the lids that get puffy and swollen, but they actually develop bags. What the bags are are actually fat pads. We have fat pads in the eye socket to help cushion the eye, the eyeball, etc. So, those fat pads get inflamed with thyroid eye disease. It’s all due to that insulin-like growth factor receptor being activated. So, there’s a lot of tissue that gets laid down in those fat pads and makes them very prominent.
Now, what I’ll tell you is that after the active phase of the disease improves, many times the fat pads do increase in size, but they may not go back 100% to how they used to be, how you used to look. I’ve actually only had a handful of patients where they actually went back to their normal pre-thyroid eye disease state. Sorry. Sometimes the fat pads do persist, and in that case, again, some of the natural treatments that we’ve talked about can be effective.
Ultimately, sometimes there’s a surgery that can be done to actually remove the fat pads or to decrease their volume to help people just have better cosmetic appearance. We didn’t talk about this aspect as much about thyroid eye disease, but the cosmetic changes can really be so, for some people, really, really to difficult to manage and very debilitating and their self-image is just so affected by the cosmetic changes, but there are wonderful treatments out there for the cosmetic treatments.
Now, of course, many of them are surgical options, whether it’s lid surgery or something called blepharoplasty, where sometimes the skin and the fat is removed or strabismus surgery, which is where the eyes are realigned. There are many cosmetic options out there. Even orbital decompression, which we didn’t mention at all, but it’s basically a surgery to remove some of the bone to help the eyes go back into a more natural position.
So, those are all extremely effective treatments. Now, of course, they’re surgeries, so they’re not taken lightly and they have to be timed right, but they are wonderful options to help to restore cosmesis and improve people’s appearance, make them look more similar to how they used to look before they had thyroid eye disease.
Dr. Eric: All right. Thank you for mentioning that. Again, thank you so much for this interview, for getting together for this Facebook live. Hopefully, everyone found it valuable. Again, consider attending the masterclass if you’re dealing with thyroid eye disease. Again, you could just visit thyroideyediseaseclass.com. Until next Friday, a week from today, Friday, May 7th, you could get a 50% discount by entering the code TED. I assume during that class we’ll also be doing some Q&A.
Dr. Rani:
Absolutely. Yes. So, we’ll do a didactic session, and then we’ll stay on for Q&A as long as people have questions. So, happy to answer all your questions. Thank you for having me. I enjoyed our conversation, and I think we covered a tremendous amount, which is amazing. I loved all the questions people typed in. It’s really wonderful to make this an interactive session. So, thank you for having me.
Dr. Eric:
Yeah, you’re welcome. It was great. Excited for the masterclass. Again, maybe in the future we’ll get together for another Facebook live because we definitely had a lot of interest, a lot of questions. Again, I apologize for the questions that didn’t get answered, but definitely, if you can, show up to the masterclass. As Dr. Rani says, we will have a Q&A session there as well.
Well, anyway, everyone, hope you have a wonderful Friday, a wonderful weekend ahead. Again, thank you so much, Dr. Rani, for getting together.
Dr. Rani:
Thank you, Dr. Eric. It’s my pleasure.
Dr. Eric:
All right. Take care, everyone.
Dr. Rani:
Bye-bye.
