Recently, I interviewed Malka, who opens up about her ongoing battle with thyroid eye disease. She talks about her challenges, unexpected setbacks, and the constant search for solutions. We also talk about the lifestyle changes she’s made, the risks of different treatments, and the tough choices she faces while fighting to preserve her vision. If you would prefer to listen to the interview you can access it by Clicking Here.
Dr. Eric Osansky:
Welcome to another Save My Thyroid audit. I’m very excited to chat with Malka here, as she has been dealing with thyroid eye disease, cataracts, and other vision issues. Malka, thank you so much for joining us.
Malka:
Hi, thank you for having me. I appreciate it.
Dr. Eric:
I’m sure this will be a really interesting conversation. I work with a lot of people who have thyroid eye disease. Definitely want to hear your background. You have been dealing with Graves’ itself for-
Malka:
A long time.
Dr. Eric:
20+ years, correct?
Malka:
When my 21-year-old son was a baby, that is when I started feeling off. I lost a lot of weight. I was only 25. They said, “This sometimes happens,” and they put me on PTU. I took it for 18 months. It came, it left, we’re done.
One of the other things I found after that, the glare started bothering me. I didn’t connect it to anything else. After that, I was okay.
Then I had twins in 2009. When 2009 came, I started not feeling well. Having trouble breathing. They said that hyperthyroidism could come back when you have twins. I said that was interesting. I didn’t know that. I went on another 18 months of PTU. It’s twins. It’s a separate thing.
It came back again. One of my doctors mentioned, “By the way, you have steroid cataracts.” I have never taken steroids. I don’t have asthma. I said, “Okay.” Keep an eye on it; just wear glasses. Wear sunglasses.
In 2020, I had a very stressful thing happen in my life. I started losing weight. I would go to the couch and be out of breath. I lost a ton of weight; I lost 20 pounds. When my thyroid came back this time, they said, “This is Graves’.” Once it comes back this third time, it’s become autoimmune rather than just coming and going.
I went on methimazole for about 18 months-two years. I went back. Something came. I had another stressful event. I came back again.
It was interesting. When I was in remission, I looked at the bloodwork. When the doctor said I was at goal, I started having on my eyelids eczema. It was very strange. My eyes were very dry. I went to the eye doctor, and the eye doctor said, “This is thyroid eye disease.” When I went to go check, he said, “I can’t correct you to 20/20. You need cataract surgery.” I’m 45 years old. I wasn’t expecting to need it that quickly. I waited for a second opinion, and the doctor said at that point, my eyes were very bad. They did cataract surgery a few months ago.
Now that my bloodwork was back at goal, now, I started having another issue. This was about six months after my cataract surgery. I started seeing this shiny image in my eye every so often. I went to the doctor in August. She said my optic nerve was very swollen, and she was worried. She told me to go for an MRI. I had already done one. Both times, they said there is nothing wrong with the brain.
At this point, I still haven’t seen a neuroophthalmologist. They gave me an appointment in October and in January, so I am still waiting. It happens to be my eyes have gotten worse in the last two weeks. At first, it was just that. Now, over the last week, there is gray. I can’t see so well. It’s a little bit scary. I really can’t see so well out of my right eye. My left eye is fine. It’s almost worse than when I had the cataracts.
Even when I did the cataracts, you couldn’t compare one eye to the other because you get one eye done and then the next one. Thank goodness I have two eyes because one is doing most of the work right now.
I had gone to one of your sessions. These last few months, I had the second thyroid eye disease. That is when I decided to go on AIP. Even though I’m at goal, I wasn’t quite sure exactly. Let’s see if I can get rid of it by diet.
I have been almost two months now on AIP. I am eating tons of greens and trying all this different stuff. You had mentioned some vitamins, so I got Vision to the Max. It has a lot of the stuff you mentioned, like green tea extract, turmeric, and zinc. They are all in this one thing.
It is just concerning at this point. I have an appointment coming up in two weeks in October. I will hopefully see if the pressure is less. It’s not your typical thyroid eye disease response as far as I can tell. That’s where it’s been a little bit concerning. That’s what pushed me to go speak to you and see what you have to say.
Dr. Eric:
You said you chatted with me through one of my sessions. Was it a Facebook Live?
Malka:
It was one of the classes.
Dr. Eric:
One of the five-day events.
Malka:
I asked you a question. I asked you about SDIT to see if you had ever heard of that being helpful. I did six months of that. Overall, I feel so much better in general. My health is better. One of the side effects is constipation. I always had constipation.
I say the irony of Graves’ is when you’re losing weight, it means you’re sick. When you start gaining it back. All the weight I keep trying to lose, it all comes back. Now, I have been able to lose weight in a healthy way. Overall, I do feel very good on this diet. It’s very hard to find stuff sometimes. I worked it out.
I also have a gallbladder issue, separately. I can’t eat a lot of meat. That also took a lot of the stuff you could eat, like whole meat and anything fatty. I can eat eggs, but I can’t eat avocadoes. I find oily foods really aggravate my gallbladder. I have had a few gallbladder attacks. I have to be careful.
I’ve heard there is a connection between hyperthyroidism and the gallbladder. I don’t know if that’s connected. At one point, they wanted to take my gallbladder out. I said I wasn’t doing that. I have just been hyper-careful about what I eat. It’s very hard. I like meat. It’s hard not to eat it. I’m careful with my diet.
I did hear about you, so I asked you in one of your last lives.
Dr. Eric:
As far as the gallbladder, listen to your body. The problem with the gallbladder is it mainly is a bile metabolism problem. It’s not really the gallbladder itself. Just addressing the bile metabolism. I do have some information on my website, NaturalEndocrineSolutions.com. I also have a few interviews on my podcast where I interviewed a few practitioners about the gallbladder and bile metabolism.
Some people could benefit from bile salts. There are numerous supplements to help support the gallbladder, or the bile metabolism.
Problems with estrogen metabolism could affect bile metabolism. How do you know if you have problems with estrogen metabolism? Sometimes, a history of ovarian cysts, uterine fibroids, thyroid nodules, a family history of breast cancer could be some indications. Endometriosis.
There is also a test you might have heard me or others talk about called the DUTCH test. It’s a dried urine test that looks not only at the hormones but the metabolism of the hormones, including estrogen. Something you might want to look into. If you have had numerous gallbladder attacks, try to figure out what the cause of that is.
Malka:
Okay. Good to know. It’s secondary, but I think it’s all connected. I personally feel the cataracts are connected. It was interesting because I was looking up on the thyroid eye disease website. What are your risks of having thyroid eye disease? One of them was cataract surgery. Really? I would never have connected that. I feel like my eyes got worse right after my first session.
I had these experiences where the reflection of the sun on something would bother me so much. Everyone would be like, “It’s totally fine. It’s a fence. Why is that bothering your eyes?” “I don’t know, it’s killing me.” I do think there is a connection. Otherwise, I can’t figure out why I would have cataract surgery at such a young age. I have seen connections between thyroid eye disease and cataract surgery.
Dr. Eric:
I have had a few people with cataract surgery and thyroid eye disease. I can’t say it’s a large sample size. This is a little bit unique as far as what I usually work with.
I know you said neuroophthalmologist. That’s the one in two weeks?
Malka:
Yes. The regular doctor- I’ll tell you what was interesting. My first doctor who told me I needed cataract surgery was a doctor who knew about thyroid eye disease. That’s why I went to him. I wasn’t comfortable with him doing my surgery. I wasn’t comfortable with the office.
I found a separate doctor who was a cataract doctor. I think what happened was when I went in in August, she panicked, and I panicked. I forgot to tell her that I have thyroid eye disease. Had she known, she was looking at it from a cataract point of view. She was just looking to see if it was a dislodged retina. That was her main concern in the beginning.
When I came home, there is a thyroid issue also. They were very hard to reach. I was waiting to see how I went health-wise to try to see- I wanted to make these appointments. This was a neuroophthalmologist. They said, “You are not a current patient. We will see you in the new year.” January is a long time to wait when my doctor says I needed to be seen yesterday.
That’s been my struggle. I haven’t been able to make an appointment. There are only five in my area, so it’s hard to find. My regular doctor was like, “You’re going to the neuroophthalmologist. They’ll deal with it.” I haven’t been to the regular eye doctor either. I have an appointment on October 16, so I will hopefully get that pressure checked and see if there has been any improvement.
Dr. Eric:
They did say the retina is intact, right? It’s all just swelling.
Malka:
Swelling of the optic nerve.
Dr. Eric:
That’s good about the retina. They haven’t done anything as far as steroids, prednisone. Not that I’m telling you to take that.
Malka:
No. That’s why I’m also not running. When I spoke to my endocrinologist, he called me up to talk to me about it. I called her and told her I was struggling. I was very scared. It was very nerve-wracking. She said that there is this medication. I think it’s called Tepezza.
Dr. Eric:
Yep, Tepezza.
Malka:
You have to get a shot for eight weeks. I’m looking at the side effects. This is not where I want to go. Even for the things it says it’s for, it says it’s for eye bulging. I don’t have that. I am not having a lot of the symptoms that are typical. The thought of going that way is also what pushed me not to call them every day and ask for an appointment. I don’t want to go on that type of medication.
I’m okay with going on medication when you need to, but for me, this feels like it’s not going to solve the problem. It will just make 100 other problems. I’m straddling between regular medicine and trying to be more of a naturalist. I’m between the two, I would call it.
Dr. Eric:
I agree with the Tepezza as far as, usually, it’s for bulging. Sometimes for double vision. I haven’t had a lot of people take it, but it seems to go well for the bulging. Double vision, hit or miss. For swelling of the optic nerve, I don’t know if that is the approach I would take. For me, it wouldn’t be the approach I’d take. I think it’s wise to speak with the neuroophthalmologist and see what they have to say in a couple weeks.
In the meantime, my guess, I could be completely wrong. Feel free to shoot me an email after your appointment. I’m thinking they are going to give steroids to reduce the inflammation. There is definitely a time and place for that.
You have done the AIP diet, which is great. It hasn’t completely helped. It helped partially. You’re still having vision problems. There are other natural agents that you could take. Some you might be taking. You’re doing the vision supplement, which is fine.
As far as helping with the inflammation associated with eye disease, the eye supplements probably are going to have minimal impact. I would say within the next couple weeks, there is definitely some things you could do. We’ll talk about these to help potentially lower the inflammation.
Like I said, there is a time and place for steroids. I don’t love them. You probably don’t love them. Most people don’t.
Malka:
Especially now since they told me that I got cataracts from steroids.
Dr. Eric:
I understand.
Malka:
Keep me away from them. I haven’t been on them yet, and they caused me all these problems. Every doctor I have spoken to doesn’t know why I had cataracts, but the steroids equal cataracts to me. That was already a trauma in and of itself.
Dr. Eric:
I understand. You don’t want to play too many games with the optic nerve.
Malka:
That’s true. If they tell me I have to do it because it’s getting worse, then I will have to do it.
Dr. Eric:
I am not telling you to jump to the steroids. If I were you, I would try to do other things as well. I’m just saying the optic nerve is affected when there is a lot of inflammation, it’s perfectly fine to do things naturally. If things don’t help naturally, that is when you might- Maybe I’m wrong. Maybe they won’t recommend steroids. I’d be surprised if they don’t.
I don’t think they’ll jump to Tepezza. Like you said, it’s getting infusions every few weeks for a total of eight. They will want to do something quickly. You would have to get approved with your insurance. It’s very expensive if insurance doesn’t cover it. I could be wrong, but I don’t think they will recommend Tepezza. It will be something like prednisone.
As far as what else you can do in the meantime, the basics, which you are already doing as far as eating well, AIP diet. Try to do a good job of managing stress. Try to get sleep.
Malka:
I am working on sleep. I don’t get a lot of sleep, but I am working on it. I have been trying to exercise. I have been doing smoothies. Mostly green smoothies. Lots of green vegetables. I have changed completely, eating—my favorite food is cake—to enjoying vegetables. I have really tried everything.
I have been having selenium. I have been eating Brazil nuts to get selenium. I really run the gamut. As far as what I could find on my own. I am ready to write down whatever else you think would be helpful. I am really looking to do whatever will work.
Dr. Eric:
Before I forget, exercise. Make sure you don’t overdo it with exercise. You don’t want to overtrain.
Malka:
Don’t worry about that. All I do is walk. The truth is, even when I exercise, I always have to watch my thyroid. Even a little bit too much, and my heart starts racing. Even when my thyroid is good, I always have to watch my exercise. If I push too much- I’ve had a few times where my heart started beating very fast, and I couldn’t slow it down. I was really struggling to get it back to normal. I’m always very careful that I don’t do too much. I really listen to my body.
Dr. Eric:
Wonderful. Sounds like you’re doing great with that.
Vitamin D. Make sure you have healthy Vitamin D. If you haven’t tested for it, I would say 25 hydroxy Vitamin D, you want it to be at least 50. Ng/ml is the units.
Malka:
Is that D3?
Dr. Eric:
D3 is what you would take if you’re deficient in it. D3 with K2. Doing a 25 hydroxy Vitamin D test. If someone is deficient-
Malka:
I’m always deficient. I have never not been deficient.
Dr. Eric:
Make sure you get those levels above 50. The only way to know is by testing. Some would even say higher for autoimmunity, like 60-80.
Omega-3 fatty acids. I don’t know if you eat fish or take an omega-3 supplement.
Malka:
The problem I find with them is they are oily, and I am worried about my gallbladder. The oil part of it is-
Dr. Eric:
I get it.
Malka:
I can’t eat salmon. I had salmon years ago, and I got salmonella poisoning. Every time I have tried it since then, my body is like, nope. I get sick from it. My body remembers. That was even before Graves’.
I have been having flaxseed, but that’s omega-6, right? Not omega-3.
Dr. Eric:
It’s some omega-3. Flaxseeds and walnuts, for example. Chia seeds. They have to convert into EPA and DHEA, which they’re not very efficient in doing. There is also algae oil. Some companies have algae oil supplements, which doesn’t have as much EPA and DHEA as a fish oil but is still better than nothing. At least until you support the bile metabolism.
Malka:
That would be the better thing. If I handle this, I could go back to that.
Dr. Eric:
There is a company called Omega Quant, where you could do an omega-3 index or a more comprehensive fatty acid panel. You ideally want the omega-3 index to be at least 8%. A lot of people, if they are not eating fish or supplementing, they will be at 4-5%. That is also something to look into.
The selenium that you mentioned is important. The only thing with Brazil nuts, first of all, they’re not AIP. You are straying a little bit with Brazil nuts.
Malka:
Oh really? I thought it said they were on there.
Dr. Eric:
No nuts and seeds if you are following strict AIP.
Malka:
I am not doing AIP. I am doing one of the ones on your list. I am not doing strict AIP.
Dr. Eric:
From The Hyperthyroid Healing Diet?
Malka:
Yeah.
Dr. Eric:
You must be doing level 2.
Malka:
I am doing one of them. It’s not the real AIP, but I am doing one of them.
Dr. Eric:
I eat Brazil nuts. I eat organic Brazil nuts that I get from Costco, and I do like them. But you don’t know how much selenium you are getting from Brazil nuts. Usually, for thyroid eye disease, I will recommend selenium supplementation, so we know how much someone is getting.
Malka:
200?
Dr. Eric:
Typically, I will recommend 200mcg of selenium. In some cases, I will recommend 400mcg. I won’t put someone on it for too long because of selenium toxicity concerns. The selenium is important.
There is alpha lipoic acid, which also helps to decrease oxidative stress. NAC can also help with that. I don’t want to make this about pitching my products, but I don’t know if you have seen my thyroid eye disease bundle.
Malka:
It’s all the things you recommend basically.
Dr. Eric:
Pretty much. It’s at TEDBundle.com if you want to look at it. It has SMT BerbALA, which has berberine and alpha lipoic acid. Alpha lipoic acid helps reduce oxidative stress associated with thyroid eye disease and in general. Berberine has a lot of different properties. There is research studies with both alpha lipoic acid and berberine and thyroid eye disease. Berberine can support the gut microbiome and help with thyroid eye disease.
There is another supplement called SMT Immune, which also has different ingredients, like curcumin and resveratrol and proteolytic enzymes. If you want to take that, you want to take it away from food, on an empty stomach. That really helps with inflammation.
SMT BerbALA also helps with inflammation and oxidative stress, as they go hand in hand. It’s not addressing the cause of the autoimmune component associated with thyroid eye disease. Obviously, the prednisone that they will probably recommend isn’t doing that either. It’s just helping to lower inflammation.
The goal would be either to take the Thyroid Eye Disease Bundle or something similar that is good quality, and see how you do over the next few weeks. See if the pressure reduces. If things are heading in the right direction, maybe you don’t need to take the steroids if that is what they recommend. I can’t tell you not to take them. That would be a decision you have to make. That is the approach I would take.
Of course, you have attended my five-day events. You’ve read my book. You know it’s about finding and removing triggers and healing the gut, which goes deeper. As far as the short term, trying to get that inflammation down. Those are some things you can do in the meantime.
Malka:
I haven’t quite found my trigger. On this diet, I have tried the coconut milk because all the other milks are off. Coconut makes my stomach hurt every time. It’s interesting. You’d think this diet is so limited, but even in there, I can’t handle the coconut milk. I can handle a little bit of coconut, but every time I put coconut milk in something, I get a bad stomachache. I am wondering if that’s a sign of a trigger. I have eliminated 90% of what I usually eat, and this one thing still gives me a stomachache every time I eat it.
Dr. Eric:
It’s probably not a trigger. It is a source of fat, so it could be related to the metabolism. Many times, people have to go beyond diet. Even in The Hyperthyroid Healing Diet, the focus is on diet, but there is a section that talks about going beyond the hyperthyroid healing diet. Diet and lifestyle is where you want to start off. It’s great that you have done that.
If someone is still having autoimmunity, those auto antibodies, the TSIs in the case of Graves’, then they want to do things other than the diet. Not to say to go back to eating the cake that you love, but still to eat healthy and follow the level 2 diet. You can continue following that.
In addition to that, you might have to do other things, like reduce your toxic load, maybe do some functional medicine testing. You said stress was a big factor when this started in 2020. Maybe do some adrenal testing. I talk about this in great detail.
Malka:
Adrenal testing. My numbers are good as far as the doctor is looking at. She says I’m at goal. Everything is within normal range. I don’t know if my numbers of the regular thyroid stuff will even come up. They’re saying I’m fine. I started out at goal.
My 11-year-old son was just diagnosed with Celiac. When I got my last set of bloodwork done, I asked them to test if I was Celiac. In order to test for Celiac, you have to eat wheat. Once I found out I do not have Celiac, I was able to go on the diet. I didn’t want to go on the diet until I tested my blood to make sure I didn’t have Celiac. Once I found out I don’t have it, then I went on the diet. I have been off of wheat and all this stuff. My numbers are fine. There are other numbers that if I did more testing, you would probably find other stuff.
Dr. Eric:
I am talking more about the antibodies in the thyroid. TSH, free T3, free T4, it sounds like those are looking good. I am wondering about the TSIs. If they are still elevated. If not, that’s great. I would think with the thyroid eye disease still being an issue, those would still be-
Malka:
I am saying I see the free T3. I am looking through some of my tests. TSH?
Dr. Eric:
No, that’s different. It would either be TSI or TRAB.
Malka:
Would they have tested that automatically?
Dr. Eric:
Not every single time. A regular doctor usually won’t. Usually it’s an endocrinologist, and they won’t test it all the time.
Malka:
I think she didn’t test them because she was testing for the Celiac. She didn’t want to do too many tests. She tested my cortisol for me because my friend mentioned cortisol. She said cortisol was also fine.
Dr. Eric:
Maybe next time ask about TRAB or TSI. I like TSI better. It’s more specific.
I would focus that Vitamin D. Get the Vitamin D tested. Make sure you have healthy Vitamin D levels.
Some of the things we mentioned, like you don’t have to take specifically the products in the thyroid eye disease bundle. Just show you have another brand of selenium, which is fine. As long as it’s good quality.
Those agents that I mentioned, those supplements, the alpha lipoic acid, the berberine, the natural agents that help reduce inflammation, like the curcumin, the resveratrol. I just mentioned a few. I would look to take that approach. Hopefully, that helps with the inflammation. It might not completely resolve it, but if you see it heading in the right direction, hopefully you will be able to avoid the steroids.
That’s a conversation for you and the doctor to have in a few weeks. Definitely keep me posted. Feel free to shoot an email once you have that consultation.
Malka:
Thank you so much. I really appreciate it.
Dr. Eric:
You’re welcome. Thanks, Malka. Appreciate you doing this audit. Hope you learned some things. Look forward to hearing from you in the near future.
Thanks, everyone for tuning in, especially those with thyroid eye disease. I hope you found this to be valuable. Even if you don’t have thyroid eye disease, there are some things you can take away from this. Either way, thanks for tuning in. As usual, I look forward to catching everyone in the next episode. Take care, Malka.
Malka:
Bye, thank you.