Ruxandra Cuna talks grave’s disease, the autoimmune paleo diet, and healthcare in Romania.
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The Thyroid Connection by Amy Myers
Transcript
Hi, I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.
So first off, you might have noticed that it’s only been a week since the last episode came out. I’m excited to say that I finally finished editing the transcript for Episode 14, which has been on my to-do list since that episode came out in January. Now that that’s finally done, I think my brain is on enough to get back on a more regular schedule for a while. PLUS, I’ve had some really awesome editing help from Felisha, who did a whole bunch of work on this week’s transcript. Thank you Felisha!
This week I’m talking to Ruxandra Cuna about grave’s disease and the autoimmune paleo diet. Ruxandra is my first European guest, so she’s also giving us a peek inside the Romanian healthcare system.
As a quick content note, we do talk a lot about food in this episode. We don’t talk about weight loss or calorie counting or anything like that, but I know that restrictive diets can be very fraught for some people, so I wanted to flag the topic because we do talk about it quite a bit.
I also want to apologize for some sound quality issues in the middle of the episode. I have no idea why, but there was some kind of technology ghost that beeped a few times in the middle of the call. I did edit out the higher frequencies so it won’t hurt your ears, but the few beeps that remain are annoying but brief.
Before we start, here’s my disclaimer:
This podcast is not intended as a substitute for professional medical advice, diagnosis or treatment. Make sure you talk to your practitioner about any questions or symptoms.
[guitar riff]
Brianne: I’m excited. You’re my first person I’m talking to outside of North America.
Ruxandra: Oh really?
Brianne: Yeah I’ve talked to… So it’s great because I’ve talked to Americans and Canadians and that’s mostly it. So I’m excited to hear about another health system too in addition to your story.
Ruxandra: Yeah, things are a bit different. I’ve done a lot of research and I’ve seen that things are very different between the two continents and what concerns the… My main concern is the autoimmunity. And doctors tend to put the problem in a sort of different manner between the two continents.
Brianne: Yeah, I believe that. Well, why don’t we start then by talking about how you got here. So I like to start by asking people if they were healthy as a kid. Like how was your health when you were younger maybe before this started? If there’s a before.
Ruxandra: Okay. This is one of the weirdest things that I think happened to me because I was very healthy as a kid. My family is healthy from this point of view. They do not suffer from any autoimmune diseases. So I grew up as a very, very healthy kid. Maybe because I know there’s a difference. I traveled to the United States a while ago, so I’ve seen what people eat and how food is delivered. A lot of conservatives right here in Europe and especially in Romania. We do have the advantage I would say that we have more organic intake.
Brianne: Like it’s more accessible?
Ruxandra: Not accessible but it comes directly from a farm so it’s not so processed because here the supermarket expansion was quite recent. So I think this was a bit of an advantage for me as a child because I first got into a supermarket when I was like 18. I was 18 when…
Brianne: Yeah. So lots more local food just being normal instead of something that you have to go look for. Yeah, because I think it depends where you are in North America, but it feels like it tends to be more expensive. So if you live somewhere that has a farmer’s market it might be affordable, but it might be hard to get to and you might only have convenience store food or there’s so many things that go into it. So healthy childhood. And then when did things start to… Like what were the first signs that something was going on with your body?
Ruxandra: Well the first times… I’m not sure about the reasons I got this. I was diagnosed with graves disease. There is no known reason for this. What I thought about… I may rewind. I thought that my lifestyle was to blame for it because I used to not get enough sleep. So maybe this was the cause. I was in quite a bit of despair after I got this diagnosis because I didn’t know what caused this actually. I started taking vitamins, lots of vitamins at once. It started for me last year in May. It first started.
Brianne: And what were the first symptoms? So before you had a diagnosis, did you have symptoms?
Ruxandra: Yeah. I did have them one month in advance before I was diagnosed. And the symptoms were similar to the ones when you don’t have enough magnesium, so muscular cramps, lots of muscular cramps, which they could not explain. So I started taking a lot of magnesium and calcium also. And they wouldn’t go away. The symptoms were still there. So I didn’t know what else to do. I did all the blood tests I could possibly do. There was no doctor who could direct me accordingly because they’re not used to this… Doctors in Romania. At least they, this is my impression, they did not see many cases of this kind. So they’re not so well prepared if you ask me. So one doctor, I went to five doctors to see more opinions. So one of them…
Brianne: And were they more specialists? So I don’t know… because we have your main doctor and then if they think you need to see someone specific… For graves disease, it might be an endocrinologist, which is like a hormone doctor, you know, a specialist. Something like that. So some combination.
Ruxandra: Yeah. My first visit was to my family doctor, which is the main doctor. And she actually diagnosed me with another type of dysfunction, like hypothyroid. This was her guess, but it was not hypothyroid and I had to do a lot of tests… Of blood tests and I had to go to four other doctors which were endocrinologists. They all gave me different opinions on the diagnosis. So it was a bit unclear.
Brianne: Yeah, I can imagine.
Ruxandra: This is what scared me.
Brianne: Yeah, that’s what’s so hard. I think I just saw a statistic that… I saw it on Twitter so I don’t know how accurate it is or what it’s from, but it was saying that something like 80% of people who get a second opinion, so go to a second specialist, will get a different diagnosis. So they don’t confirm them very often.
Ruxandra: I got four opinions.
Brianne: Yeah. Yeah, exactly. And a different one each time.
Ruxandra: I did some more blood tests and so I got to…
Brianne: And graves disease is an overactive thyroid. Right. So it would look like hyperthyroid as opposed to hypo.
Ruxandra: Yes. That’s right.
Brianne: But you learned that eventually.
Ruxandra: It was a bit tricky at first because my symptoms were more leading towards hypothyroid. My family doctor was not quite wrong, but I had fatigue and I was very dizzy and tired all the time. So it was a bit tricky to diagnose it without specific blood tests.
Brianne: And so then eventually after five doctors, was it your fifth doctor who caught it?
Ruxandra: Yeah.
Brianne: And then so was that last year in 2018?
Ruxandra: Yeah. That was in May 2018 when I did lots of blood tests because I also became a bit hypocondrial… After I got a bit panicked. I started taking the treatment for hyperthyroid, which is graves disease, medical treatment.
Brianne: Okay. And what… I know there are a couple different things that people can do for graves just within traditional medicine. First, let’s talk about that. But it’s basically trying to slow down your thyroid or stop your thyroid. And so some people will have their thyroid ablated right, which is where it’s basically destroyed, and then you end up taking thyroid medication instead. Were they looking at that or were there other medical options?
Ruxandra: They took it step by step here in Romania. They… Most of them prefer in the first stage the antithyroid medication, which they call the synthesis treatment, like propylthiouracil and triazole. These are usually taken for about a year or two. They slow down your thyroid, and then they pass on to the iodine treatment where it’s supposed to destroy your thyroid for a determined period of time. Or the ultimate solution is to take out the thyroid. But this is also a bit tricky because also the doctor, I don’t blame them or anything, but it’s a very tricky organ. My father was a bit sarcastic with me and he told me “Oh my God, you couldn’t have gotten another disease? This is an experimental disease!” with the thyroid and everything.
Brianne: Yeah, get one of the easy ones!
Ruxandra: Yeah, yeah. It was pretty bad at first. Now I’m laughing on it, but it was very…
Brianne: Yeah, when you’re in the middle of it and you don’t know what will help or anything.
Ruxandra: Yeah, and especially as you don’t find a practitioner that could be very self confident when he says you have to do this and this and this. That is what I was expecting. But then I received lots of uncertainty.
Brianne: Yeah. Things to try but none of them seem to know or none of them seemed confident maybe about what would work. That’s what’s so hard I think with a lot of chronic conditions and a lot of autoimmune conditions because they’re trying so many different things at once and new drugs are coming out all the time. And then new other experiments, like we’ll talk about diet, definitely. All this other stuff comes up and I think it’s hard to find a path and maybe there isn’t one path for everybody. That’s part of the problem.
Ruxandra: Yeah, that’s right. Especially if you don’t have access to as many information as… You guys have access to much more information from what I’ve researched. For example, American doctors they don’t prescribe… they rarely prescribed this synthesis treatment. And I’ve read that they go directly to the iodine therapy, which we don’t do here in Europe necessarily. So it’s a bit different. The approach is a bit different.
Brianne: Yeah, that’s really interesting too. I do think people quickly end up getting ablated too, or maybe they get caught so late, I don’t know. But it’s a good question. So also, how does healthcare access work where you live? So do you guys have, I don’t know anything about it. Do you have an insurance system? Is it public? Is it private? Do you know what I mean?
Ruxandra: It’s quite, quite similar to yours. We do have a public health system that I did not make use of until now because it’s not very performance… It’s not very… It’s not what I needed. I used my private health insurance to get all these things done. But again, the health insurance does not cover all the costs. So I had to invest quite a lot.
Brianne: And then all the testing, which can get expensive to do repeat tests and specialists.
Ruxandra: That’s right. Yeah, that’s right.
Brianne: Yeah. And drugs. Okay because I also think, since I live in the States now, but I used to live in Canada and they have different… Canada has a fully public system and so it’s even just interesting to see how people’s experiences are different based on how easy is it to get into a specialist. Do you have to have the money? Do you have to have the money for drugs? Do you have to… All that stuff. So this was partly out of pocket or at least you’re paying for insurance and then paying for whatever it doesn’t cover?
Ruxandra: Partly, yeah. I think in Canada… We do have some cousins in Canada and they told me it’s quite more comfortable with the health insurance to get everything covered. I’m not sure about the particular cases.
Brianne: Yeah. In Canada, the thing is that, I mean, you don’t see the cost because you pay for it in your taxes, which is mentally easier. You don’t have to think about it. And you never pay out of pocket for doctor’s visits or hospital or medication in hospital. So all of that, you don’t even need to bring money with you, which is really different mentally… Or lab work. You don’t pay for lab work. But then as soon as you get into… If you ever look at alternative stuff, like if you want to go to a naturopath or something like that, that’s not covered at all, which is… It’s not covered in the States either. And then medication is not covered and there’s… But there are some separate public programs for people who need really expensive medication. And in the States you’re paying every time. So I pay for insurance, but every time I go to the… I get one free doctor’s visit a year and then every other time I have to pay to go to the doctor in addition to insurance, if that makes sense. So…
Ruxandra: Yeah that’s quite frustrating I think
Brianne: Yeah. Anyway, so that’s the insurance. So you were diagnosed and then you started on the medication, is that right? And you were frustrated with doctors. So then what happened? Did the medication help your symptoms?
Ruxandra: Not really. The doctors told me from the very beginning that the medication would take time. And this was also the advice that I received from my mother. She said, “Respect your illness.” Something like that. “You should respect your illness.” Later on I understood that this means change your lifestyle, change everything. Everything in your lifestyle according to the illness. And this is what I’m doing right now because I’ve been taking the medication for almost one year. A few switch of doses. But what it… the symptoms did not disappear instantly. Some of them disappeared gradually, like the muscular cramps. I got less of these and also the fatigue, being tired. It solved also gradually. I’m not so tired anymore but I didn’t feel completely well. I didn’t feel like myself again. If I do a physical effort that I used to do before, for example, running or going to the gym, if I do it right now, I get tired a lot faster. So I’m different. I’m a different person.
Brianne: Yeah. And do you find… So you get tired a lot faster. Do you find that it lasts longer too? Like if you tried to go for a run or if you exercise that you’ll have like an exercise hangover later that day or the next day?
Ruxandra: No, It doesn’t last longer but it’s a weird type of tiredness. So it’s like an exhaustion.
Brianne: Yeah, it’s in your body. Yeah I get that.
Ruxandra: It’s very weird. It’s hard to explain.
Brianne: Yeah. And I know also English isn’t your first language, but even if it was we don’t have words for… We don’t have that many other words for tired. There isn’t one for this situation, which maybe there’s a language that’s really good for chronic illness that can explain the differences, but I don’t know. Somewhere. So then, because I know a little bit from what you told me, at some point it sounds like you also started researching more of what else could you do? So tell me about that. What, how did you get into that? Thinking that way?
Ruxandra: Well, I got into that after I visited all the doctors. I was hospitalized for a couple of days. I received the same feedback from the doctors. They didn’t tell me anything else. So there was one doctor…
Brianne: When was that?
Ruxandra: That was in October, 2018.
Brianne: Okay. So pretty recently.
Ruxandra: Yeah. I just wanted to see if I’d find some newer perspectives. Newer feedback, other feedback. So there was one doctor in the hospital who was away working in the Dominican Republic and Haiti. So I thought if this doctor travels so much too. He was an endocrinologist. I thought that he would be a brighter opinion and he just gave me friendly advice because here in Romania, doctors are not allowed to professionally recommend alternative diets or treatments. He just gave me this friendly advice to read Amy Myers’ book.
Brianne: Yeah that’s… I’ve read it… Amy Myers’ book. The thyroid one or the autoimmunity one?
Ruxandra: Both.
Brianne: Both. Yeah. And she has graves disease.
Ruxandra: Yeah, I know. That’s what gets me, you know, made me hope for more.
Brianne: So the doctor suggested it off the record? Kind of.
Ruxandra: That’s right. And that was the starting point that I started looking for an alternative to the treatment because I wasn’t feeling like I wanted. It wasn’t enough with the treatment. I still take the treatment right now because I didn’t receive the medical okay to let it go. But that changed my perspective considerably, especially as I wasn’t paying so much attention to what I ate and out of despair, I reached the conclusion that we are what we eat. It led me to believe that. And right now I’m eating like I should because I feel quite well. It was an experiment for me.
Brianne: And you started in the fall then? So after October?
Ruxandra: I first started, you mean the diet?
Brianne: Yeah.
Ruxandra: I first started in December, but I could not keep it properly because there was Christmas and we holidays here in my country are full of everything and my parents were totally not supportive with my diet.
Brianne: It’s hard.
Ruxandra: Yeah. So I seriously started it on the 1st of January, it was like my new year’s resolution. So, I’ve done one month now of dieting. It’s the reset diet that I’m doing right now and I plan to do it for 60 days, for longer than 30.
Brianne: Yeah. And how are you finding it so far? So depending on what you ate before, I know all of these diets can be a real change and I’ve definitely done it so I understand. But it feels good, it sounds like.
Ruxandra: For me, yes. How about you? How does it feel for you?
Brianne: Well, I’m kind of in a funny place right now, which is that I am back to seeing doctors. So I’m back to looking for a diagnosis. I don’t have a diagnosis that explains everything. I had a really big flare last year that was caused by mold. And so in that case, changing my diet didn’t make a huge difference. But before that, totally cutting gluten got rid of my eczema completely and some other problems. And eating low sugar, low carb improves my energy, but it’s not enough. But I also don’t have an autoimmune disease or I don’t have high inflammatory markers. So I just, I think diet is so personal, but I know that I feel better when I’m eating mostly vegetables and meat and like real foods compared to over the holidays when I ate a lot of chips and I didn’t feel well. But I don’t have… the hard part is I feel like it’s all an experiment. I think this is true for everyone, but it’s all an experiment for me because at this point I don’t have one diagnosis where one person is like, “This should help for what’s going on.” Even if those are still all imperfect suggestions. But I agree that it matters.
Ruxandra: I know that it’s hard.
Brianne: Yeah. And does… I forget because it’s been awhile since I’ve read them. Does Amy Myers have her own diet that she recommends or is she…
Ruxandra: Yeah, she does.
Brianne: And it basically is an adapted paleo?
Ruxandra: Yeah, it’s an adapted paleo. And I think there’s just a couple of ingredients that are missing, but she’s got lots of recipes. So there’s a lot of inspiration in the book. But I’ve also done other research online. I found lots, lots, lots of recipes. So it was quite okay.
Brianne: Yeah, it was easier… the internet helps.
Ruxandra: After a while.
Brianne: Yeah. So you’re a month in.
Ruxandra: Sort of a self discipline. I just wanted to say that I had to discipline myself and be very, very organized. I get my symptoms chart, my ingredient chart, food chart, symptom, everything.
Brianne: Yeah. Do you write everything down on paper or do you use an app?
Ruxandra: Yep.
Brianne: On paper.
Ruxandra: On paper because I don’t trust apps. My phone just crashed two weeks ago, so on paper.
Brianne: Yeah. Hard copy. That’s good. I just started tracking my symptoms again like two weeks ago because I haven’t done it for a long time. I’m going to see a neurologist in May and I realized that I have to actually know how often everything is happening if I’m going to the doctor. So, but I love the idea of using an app. And for me, I never use them. Like, I forget to put stuff in or they’re not quite right. So I’m with you. I’m on paper right now. Okay. And so that pretty much brings us to the present. So I’d love to know more about what else you’re up to during this time. So if you work or go to school or just have friends in your life, how has this whole experience impacted the rest of you?
Ruxandra: The most difficult part of this disease was that I was, and I still am, a very active person. I do have a job. I manage a shopping center and I don’t work at home. I work remotely, about 200, 300 miles away. I turn kilometers into miles now. So I live away from home from Monday to Friday and I returne home every weekend. It has not affected my driving skills or my eyes, my sight. I didn’t have problems of this kind, but it slowed me a bit.
Brianne: Are you on your feet very much at work, like walking around and stuff or are you mostly sitting?
Ruxandra: Yeah, yeah, yeah. I’m very active at work and it was a bit different, a bit more different than what I was used to. Basically my body was not mine anymore and it was another type of experience. I could not control it. That’s what scared me at the beginning. Right now I’m pretty self confident. I do recognize the symptoms before they appear because I have these pre-symptoms that tell me when…
Brianne: Yeah, you get a bit of a warning.
Ruxandra: Yeah. But with the diet and everything, it has improved considerably. I could not believe it at first because I did not trust these things. I never kept a diet in my whole life. It’s the first time I’m doing this. I have done it out of despair.
Brianne: Yeah. I think a lot of people do.
Ruxandra: But it actually works. Unfortunately.
Brianne: But it’s helping. I know, unfortunately! Somebody else that I talked do, I forget… Episode six maybe? She said she tried keto, so like high fat/low carb, a ketogenic diet. And she said when she tried it, it was because she wanted to prove to people that it didn’t work. She was sick of people suggesting it to her and she said, “Fine, I’m just going to do it. And then you’ll see that it doesn’t help me.” And for her it made a really big difference. [Ruxandra laughs] So she takes medication that can help and she does other things that can help. But as it turns out, like okay, keto was for her. And I think that’s kind of… It’s not quite the same, but you’re like, “I’ve never wanted to do this. I don’t…” If you’re not obsessed with health fads sometimes they still sneak up on you. And you said your parents are not into the diet. I guess it’s also early, so other people don’t know how it’s working for you yet.
Ruxandra: My husband knows it because he’s quite supportive. We don’t live together, but when we meet on the weekend, I cook for myself and he eats everything I cook. So he likes it. It’s very tasty. It’s not so bad. And I have an advantage that my parents are offering me all of the organic ingredients I can use because they have access to it, my family. And it’s quite okay. I’m very glad that I have this opportunity.
Brianne: Yeah. That you’re able to do it. I think that’s…
Ruxandra: Yeah. Not to buy from the hypermarket I mean.
Brianne: Yeah. Because that’s something that can be hard too with the different autoimmune paleo diets basically is that if you are somewhere where it’s hard to get access to this kind of food, which especially in North America, a lot of people are, it’s so much more expensive to do. And so medication might be covered by insurance, but organic food and grass-fed meat is not covered by insurance. And that’s, you know, I kind of understand why, I do. But when you hear stories about people, I just wish that it would be studied more. Like this is a good intervention for some people. So it’s also true… It’s funny, when you cook for somebody else, they might not even realize what’s missing from the food, right. Because it’s probably… It’s grain free, I’m guessing. Is it nut free and seed free too?
Ruxandra: Everything free. Dairy free, gluten free, sugar free. Nut free. So I only eat vegetables, meat, and these exotic fruits like avocado and coconut. Everything coconut made: coconut milk, coconut butter.
Brianne: Yeah. I have a lot of coconut right now too.
Ruxandra: I do them myself. I learned how to make milk myself, so I do it so that it’s 100% organic.
Brianne: Yeah, just from coconuts. That is commitment. So what are your favorite things to eat now? I know you’re a month in, so you’ll probably find new stuff, but if you’re like, “I don’t have any time, I need to eat something quickly or bring something with me.” What works?
Ruxandra: I cook a lot. I didn’t cook before. I never cooked before in my life. My mother cooks very well, so I didn’t want to compete with that. But since the beginning of January, I started cooking myself after the recipes. So I like the cream soups very much, avocado and cauliflower cream soup, a zucchini cream soup. I also like meat. I eat a lot of meat. I like chicken wings, they’re my favorite. Chicken wings are not to be consumed… they’re to be consumed in moderation, but they’re my guilty pleasure right now.
Brianne: Yeah. It’s important to have one, like have things to enjoy still. Yeah, definitely.
Ruxandra: Yeah. And I also like the sweets. I discovered some great desserts, like tapioca pudding and chocolate mousse, and coconut pudding with berries. They’re great. I’m using honey as a sweetener.
Brianne: Yeah. And a little bit of honey is okay? Or you’re not noticing it?
Ruxandra: In moderation, yeah.
Brianne: Yeah. It’s like if you eat it constantly, then it is just sugar. But if you have a little, the fact that it’s not refined helps. So you want to do 30 more days of this level of diet. And then what comes next for you? So how is your body now and are there things that you still want to figure out or I don’t know, whatever that means to you?
Ruxandra: Yeah. Yeah, definitely. So during this month, my symptoms got improved. I have about four symptoms that I pay attention to like the fatigue, the muscle cramps, which are almost gone. And sometimes I’m dizzy. It’s very rare now after I started the diet. I’m also taking vitamin D that I think it counts also. And my expectation is to have a better improvement of these symptoms after another 30 days of diet because I’ve seen that it works and it’s healthy food. It cannot harm me. So I’m willing to go on. After which, I’m looking forward to reintroducing the eggs, which I love. I love eggs.
Brianne: Yeah. Eggs are hard to cut. So you test out what foods you can reintroduce at that point. And then you’re hoping to…
Ruxandra: Then I’m hoping to be able to hold this discipline for another two years at least. This is what I’m hoping because I just want to see… I’m going back to the hospital at the end of February to see how all of my tests are after this period.
Brianne: Is it mostly thyroid hormone that they check again? Is it your different thyroid hormones?
Ruxandra: It’s everything that they check because they’re sure that the thyroid is a problem, right? They didn’t… Actually autoimmunity is a bit tricky because from what I’ve read, and it makes sense, other practitioners from other parts of the world say that this is not caused by the thyroid, this is caused by the immune system. The doctors here, they treat the tyroid, they don’t treat the symptoms. So I want to find a compromise.
Brianne: Right. Yeah. And they look at your inflammatory markers. Something that I remember from Amy Myers, but that I’ve read other places too, is that once you’ve been diagnosed with one autoimmune disease, you are much more likely to be diagnosed with other autoimmune diseases because of exactly what you say. It’s a problem with your immune system, not a problem with your thyroid or whatever. And so that’s the part that really makes sense to me that Amy Myers talks about and other people talk about, that if diet and other stuff can help moderate that a little bit, then let’s do that. Because treating the thyroid while another disease pops up is like just creating another problem or letting another problem happen.
Ruxandra: It’s a vicious circle.
Brianne: Yeah. And it’s more complicated than that and in most people’s bodies with different diseases but… it makes sense. So you’re going to the hospital soon it sounds like, February. And I guess you’ll see what they tell you. You can’t know yet.
Ruxandra: No, I can’t know yet. I just hope they will reduce the dose of medicine. I’m on propylthiouracil right now. This medicine is not available in Romania. I buy it from Hungary. They have it in Hungary and in Bulgaria. I’m going to restock so that I have more just in case, but I’m hoping to reduce it and to eliminate it essentially.
Brianne: Yeah. Yeah. And that kind of, I guess that depends on how much the function goes back to normal. And how long, I think you answered this but I just forget, how long before you were diagnosed were you feeling symptoms?
Ruxandra: About one month.
Brianne: Yeah. So hopefully there’s not a ton of damage, which is the problem that some people have as well with autoimmunity. Because sometimes it’s years and then they do need medication indefinitely because… Like diabetes is like this or hashimoto’s, the other thyroid one, where your body just can’t produce what it needs to be producing anymore. Does your medication have any side effects?
Ruxandra: Yes, it does.
Brianne: Yeah. So that’s probably part of it.
Ruxandra: It’s something called a leuko… Something like that. It decreases the cells from your blood. It’s something that causes leukemia, something like that. It’s not leukemia, but it’s a disorder in your blood.
Brianne: Something with leukocytes probably?
Ruxandra: Yeah. Yeah, that’s right. That’s what they’re called. And it also has some symptoms when it happens. It didn’t happen to me right now because I was not allergic to it or anything. But for example, when you have a sore throat or when your gums are swelling, it’s a sign that you have to stop the treatment because something is wrong. So we have to do the blood tests again.
Brianne: So some people have bad reactions, which I guess is true about lots of things. But it’s just one thing you want to avoid.
Ruxandra: It’s toxic. So the medicine is very toxic.
Brianne: Yeah. And most, I guess I don’t know what class this is, but it’s like most immunosuppressants can help people improve their quality of life, but can also cause some pretty difficult side effects.
Ruxandra: Yeah, that’s right.
Brianne: And that’s the balance. Great. And so did you do a lot of other research? I mean you read Amy Myers, you’ve probably read a lot of other stuff since then or read online. Is there anything that you’ve learned about healthcare or autoimmunity or whatever that really surprised you over the last year?
Ruxandra: Yeah, many things surprised me because I went from zero to now. I didn’t know anything about the disease, anything about the doctors. It surprised me that the doctor’s perspective was quite calm and relaxed at first. I was very in a panic. So it scared me a bit. The issues were not getting solved. I’ve learned that it’s still an experimental disease just like my father told me. And the doctors, the last time they recommended that I take out my thyroid in order to be able to have a baby. But online I’ve read that this is not quite recommended. So this is also a reason for which I would like to test the diet and see if it does any good. Because once you get your thyroid out, it would be another issue starting. I would go to the opposite, to hypothyroid. I would have to take a medication every day for the rest of my life. And the risk of having kids with issues, brain issues.
Brianne: Yeah. And I know for people who are trying to conceive, who may not have an autoimmune condition but who are just kind of normal low thyroid, thyroid hormone is very important and being low thyroid can increase your chance of miscarriage. There’s a lot, I think it interferes with people’s ability to conceive a lot, to not have that number really good.
Ruxandra: Yeah that’s right.
Brianne: And like you say, if you get your thyroid removed or ablated, you don’t produce your own thyroid hormone at all anymore. And I think this is… Somebody actually, so in the episode that came out this week that we’re talking, which will be in the past when this episode is released. Chrystal who I talked to, she has one kid and she wanted to have a second kid and she talks a lot about how the medications that she was on meant that she couldn’t get pregnant. So she’s like, “I want to get better enough that I can take some time away from my medication so that I can try to conceive.” But it’s such a hard rollercoaster to be on when you’re thinking about things that way.
Ruxandra: Yeah, it is. It is. I think it’s frustrating. I’m not trying to have a baby right now, but I think if I was, I would be very frustrated.
Brianne: Yeah. And it’s like if you think that you ever might want to, because this is my headspace, like I don’t know if I want kids, but right now the way that my health is, I certainly couldn’t. And that’s a frustrating feeling to go, “Well, I would like to be in a place where I at least have a choice.” You know, like that’s how that health stuff can kind of work. It’s interesting. And difficult.
Ruxandra: It is. But I’m positive.
Brianne: Yeah. Yeah. Well, and it sounds like things are improving for you, which is awesome.
Ruxandra: I hope so. I hope so also from the medication perspective. I do hope I get it out of my system.
Brianne: Yeah. And on a different or on a lower dose et cetera. I mean that part is awesome. So does your doctor prescribe this medication and then you have to go somewhere else to get it? Like they tell you about it? How does that work if you don’t have it available?
Ruxandra: If you don’t have it, you just order it from where you find it. I have someone who was living in Hungary, someone I know who can provide it for me. But if not, we have these websites in Europe where you can just order medication based on the prescription and they send it to you by mail.
Brianne: So your doctor sends a prescription to the company?
Ruxandra: No, no, no. He gives it to me. So I order it online.
Brianne: And then that, does that come out of pocket? Like does insurance cover any medication stuff?
Ruxandra: No. No. The insurance does not cover any kind of medication. Moreover, the doctors can only prescribe medications that we have here. So they have me sign this paper where I say that I’m aware of the side effects of the other medication and that I take them on my own risk, which is normal. I understand it.
Brianne: Yeah. It’s kind of true anyway, but in this case there’s an extra step because you’re getting it somewhere else. Got It. Got It. And then is there anything else that stands out for you about chronic illness and what you’ve learned? Like either as a community or your own experiences that you’ve kind of thought of while we’ve been talking or while you’ve been learning about it in general? If that makes sense. Like what else? How else has this impacted your life?
Ruxandra: It affected my life in so many ways and I just had to start it over again with everything I do and how I live my life, how I eat, how I sleep. How I handle stress, because this is also another factor that I think contributed to this disease. Regarding the community, it’s quite… I don’t know how it is in the United States, but here the community’s quite small on this subject because people are not very well informed. The only information that people tend to get here is from the doctor, which is just one way. It’s just one perspective. So I found a lot of communities online, in other countries in Europe and in the United States and I’ve read lots of opinions, and I wish I had discovered these communities sooner when I got ill because it was quite difficult at first to organize myself. I’m a very well organized person. I plan everything in detail. So lucky me, because if I hadn’t been this way, I would have been crazy by now. So I had to make some friends who could provide me feedback on the recipes, pieces of advice. For example, I once made a mistake in the first week and I drank some bottled juice, bottled orange juice. I don’t know why I did. I just did it and I freaked out and I entered this community I’m in and I asked everyone, “Hey, I drank this juice. Is it okay? What would you do? Would you take the diet one week further?” So it is helping me. The community is helping me quite a lot.
Brianne: Yeah. I think it’s helpful when it feels like your health totally depends on following all these rules really closely. And at the beginning, kind of like you say, you can make mistakes and you don’t think about it or you don’t realize what something is or whatever. And when you’re by yourself and all you have is the book with the rules in it, it’s so easy to get completely overcome. But really most of the time if it happens once, it’s kind of more important to not let yourself get so stressed out. Because when you get stressed out you can get into a stress cycle. And that becomes its own problem that can cause symptoms that have nothing to do with the sugar or whatever. And it’s helpful to have people who can say that.
Ruxandra: Yeah. Yeah, it is.
Brianne: Who can go, “Don’t worry. Keep going.” And then you just kind of mentioned this, but do you have a theory of why this happened or how this happened? So why did your autoimmunity start based on whatever, what you’ve read, how you were living. It’s okay if it’s not scientific, I’m just interested in how we explain this to ourselves. Does that make sense?
Ruxandra: Yeah. Yeah, sure. Because we always need an explanation for everything. So I also tried to provide that explanation for the disease. I made a… Rewind. Before I got these symptoms, I made a trip to Ukraine. I traveled there for the weekend. I didn’t get enough sleep the night before getting on the plane. So I think this exhaustion, I was absolutely exhausted. I was very, very tired. I could not sleep that night. And I think that that’s when it started. I didn’t get enough to eat. But this is just a starting point. This is just a sparkle, let’s say. I think I’ve been having these symptoms in a lessened manner from a while back. So I think I’ve been having them, but I didn’t know about them until this started.
Brianne: Yeah. You didn’t notice anything severe, but now that you know what they’re called, you can kind of see moments when you were maybe more tired than normal or cramped or whatever.
Ruxandra: Yeah, that’s right.
Brianne: And so you had one weekend that now you think…
Ruxandra: Yeah. I think this is what caused the disease. It’s a very futile explanation. I’m not sure if it’s right, but it’s the only reason I’m finding right now and maybe the stress that I had in the period before that. I think this contributed too to the starting point.
Brianne: Yeah. It’s like stress and not sleeping.
Ruxandra: And I was also very vicious. I was also very vicious. I used to drink a lot of coffee. I didn’t get enough sleep. I used to smoke a lot. I used to drink alcohol. Not much, but alcohol is forbidden right now. I think all of these factors just melted together and created what I’m experiencing right now.
Brianne: Yeah. Yeah. And I think all those things, because I was definitely like that at one point too. Like I did not sleep enough and I was so busy and I had lots of coffee and I had, again, not like lots of alcohol at once, but I probably had a drink six nights a week or something. I do not do that anymore because I can’t. But I think for me, one of the things that happened is that that meant that I didn’t notice some of the early stuff that was happening or I had an explanation. So if you’re starting to feel fatigue, but you know that you haven’t been sleeping, you’re like, “Oh, I need to get a little bit more sleep because I’m tired.” And if you start to have some… because for me, I don’t get cramps but I do get, it’s called parasthesia, but nerve pain. And the first time it happened, I had barely slept for two nights in a row and I went to a wedding and I had a bunch of red bull and then I had a bunch of vodka and then I started to get nerve pain and I was like, “Well, it’s because I’m pushing my body too hard.” But actually it was the beginning of something that kept happening. So we can explain this stuff to ourselves. And then one day you realize… You look around and everyone else who’s smoking or drinking or having coffee is not having these consequences.
Ruxandra: Yeah, that’s right.
Brianne: Okay. I think we’ve covered most of the big stuff and the story of it. And I think we’ve hit on most of my questions because I’m so interested in diet and I’m so interested in the way that we think about it. Is there anything that is interesting about it to you that we haven’t covered? It’s okay if no.
Ruxandra: About the diet you mean?
Brianne: No. Just like about the whole thing. About autoimmunity or chronic illness or about the diet. Is there anything that we haven’t talked about that…
Ruxandra: I think we covered everything.
Brianne: We’ve covered lots.
Ruxandra: My main conclusion, because I also thought about my personal conclusions, is that this is a lifestyle. I would never consider that before. I could never think that I would have the power to do this, to be so disciplined, to have a diet and respect everything. Like I’m doing right now. So it’s a lifestyle. And it changes you completely. Especially if you go on to being healthy to all of a sudden being ill. It’s terrible. It’s terrible. But it did not destroy me. It gave me this power to move on. So I’m very optimistic.
Brianne: Yeah. And to take care of your body, which like you said, you know that this diet is good for you aside from everything else to take a break. That part is good.
Ruxandra: Yeah, it is good. But we are what we eat. I remember my parents told me this since I was a child, they would insist on this so much, “Don’t eat crap. Eat healthy” Because they always provided us with quality foods, healthy food, not processed, not everything that you find now in hypermarkets. And I’m 32 now, almost 32. It took me so long to understand this, that they were telling me this from my childhood. I could never understand it until I am living it.
Brianne: Yeah. Until you hit a wall and you had to make a choice basically.
Ruxandra: That’s right.
Brianne: That’s true for me too. You were just saying that you never would have thought that you could do it. And I think it is amazing. This is one of the things about chronic illness that is amazing is it does change your perspective a lot. So all of a sudden, not having a glass of wine or not having a cup of coffee if you’re avoiding those things… When the decision is like, feel my symptoms or not drink this wine, all of a sudden the choice becomes a lot easier. Then when you’re just feeling pretty healthy and going, “Okay, I’m going to put all these rules on my life for no reason.”
Ruxandra: Yeah. You do become strong all of a sudden. I didn’t think I was this strong. Cooking all by myself and doing everyting.
Brianne: But you are!
Ruxandra: I’m surprised, yeah.
Brianne: That’s awesome. Well, I’m excited and I now I’ll see you on Instagram, but I’m excited to see how you do after another 30 days and then after a year.
Ruxandra: I’ll keep you posted!
Brianne: And maybe eggs will be back, maybe not.
Ruxandra: Hopefully.
[guitar riff]
Thank you for listening to episode 22 of No End In Sight! You can find Ruxandra’s AIP instagram account @paleodiet.coach, you can find this show on instgram @no.end.in.sight.pod, and you can find me on both instagram and twitter @bennessb.
In the next episode I’ll be talking to a doctor with paroxysmal hemicrania, which is a type of migraine. He’ll be talking about how this experience exposed him to the limits of western medicine and inspired him to start his very own CBD company.
And don’t forget that I have a small Facebook Group called Chronic Hustlers for people living with chronic conditions who are self employed. Now that I’m trying to get back on a more regular work-type schedule, I’ve got plans to get this group a little more active.
And finally:
This podcast is supported by my cross stitch company, Digital Artisanal. When I’m up for it, I make simple modern patterns that you’ll actually want to hang in your home. I love to cross stitch as a way to feel productive during flares when I’m stranded in front of the television. I’ve been working on winter patterns but it’s definitely spring now so I’ll probably switch tacks soon. Either way, I’d love it if you checked us out at digitalartisanal.com.