Storified by StepOne Health· Thu, Apr 25 2013 18:08:23
Mary: Now tell me, when you were being told that you had fatigue or depression or postpartum depression, you were pretty much going through and experienced what a lot of thyroid patients go through. Was it frustrating to be told that it was one thing, but kind of to have a sense underlying that there may be something else going on?
Gena: I can't even begin to tell you how frustrating. When you're somewhat of a celebrity and you're in the Hollywood scene and you're known for this and that, the doctors, of course, they're happy to greet you and you can get the appointments and you get that kind of special treatment. But when it's all said and done, you walk out of the office and you're not diagnosed. You don't feel any better. This went on for years. Even a very, very well-known doctor, that when I was 27 I was diagnosed, he said that I had diabetes. This was on a Friday. I get the call, you're diabetic, and you're going to meet with a nurse on Monday, and she's going to show you how to do injections and all of this stuff. I'm thinking my life was over, my gosh, how can this happen? The Monday, he said it was a mistake, you're fine.
He was the same doctor that I kept going back to after the birth of my second baby, and that's when it really, really got worse, the puffy face, the weight gain. I went from 130 to 180 not being pregnant, so I really noticed the symptoms with losing my hair, very coarse, very dry, depression, skin issues, weight issues, and just a sense of not feeling well. That's what's so frustrating is that you can't put your finger on it. It's not just one thing. When I would go in, they would just be like, “Oh, oh, Gena's calling again.” It was kind of one of those things, and it was. It was very frustrating, because all the signs were there, and yet it wasn't found.
Mary: So how did you finally end up getting diagnosed? If you can share that with your listeners, what precipitated that diagnosis and what symptoms and things finally lead to them figuring out that you had Hashimoto's and hypothyroidism?
Gena: During my third pregnancy, I went hyper. A lot of people think oh, that's great. I was losing weight in my pregnancy, and I actually looked probably better than ever as far as being pregnant. I felt pretty well until my heart would kind of beat out of rhythm and heart palps, and I was in the hospital twice. Once when I was seven weeks pregnant, and again at seven months. They were going to cardio-vert me, which if you remember seeing in an ER episode when they put the paddles on your chest and you jump up, they're stopping and restarting your heart, to get me back into sinus rhythm. The EP came in and said, “Well, this is what we're going to have to do.” I said, “Have you ever done this to a pregnant woman? I'm seven months pregnant. I could give birth right now, my baby would be fine.’' He said, “Not no, in my 36 years have I done this. You'll be my first.' I said, 'I won't be. Bring in a high risk, and let's figure this out.' But, again, there you have it. I wasn't diagnosed.
Through all of that and all the medications they had to give me during the pregnancy and just the frustration, I had signed on to do Body after Baby with People Magazine, which is a really big issue. I was so happy to do it, obviously, and it kind of kick started me into okay, I really have to get into shape for this. I hit the trails running six weeks after she was born, and really got into the best shape of my life, but I was hyper and I was still undiagnosed. I had a physical when she was six months old, and I was told that my TSH was high. This is my doctor, the one that I had always gone to. I'm very loyal, by the way, [laughs] as you can tell, even though all hell was breaking loose. I was still very loyal to my doctor. I went back, and he said, 'It's a little below 7.0, but I'm not medicating you because you're going to have to take a pill for the rest of your life. You're not going to want to do that.' I said, 'Okay.' First of all, I didn't even really know where the thyroid was, I didn't know anything about it. I hung the phone up with him, and I immediately called my OB, and he's a friend of mine. I said, 'Listen, my level, my TSH blah, blah, blah, whatever it's called, test was this number.' And he said he called in Synthroid immediately, that was it. He said, 'I can't really help you from this point on, you're going to have to see an endo.' He gave me a number, and I still see her periodically.
I went in to see her, Dr.Reddy, and they felt my thyroid. They could see that it was enlarged and that I clearly had issues. They did a litany of blood work and every test you can imagine. I think upwards to 18 different tests, antibodies, everything. Everything came back fairly normal. I was very low on my D and some hormonal things, but they did an ultrasound just because of the enlargement of the thyroid. That's when they clearly saw the Hashimoto's. I had a couple techs and a couple doctors in the room during this procedure, and they're talking together and I have no idea. They're like, “She has Hashimoto's Disease, okay, blah, blah”, and I'm thinking,” Hashimoto's Disease, what a bizarre name. What the heck is it”
I had a nodule that looked suspicious, and that's when I had an F&A, fine-needle aspiration, where they biopsy. It was really scary. To answer your question, I was diagnosed probably seven months, eight months after Stella was born, with Hashimoto's Disease. To be honest with you, even going through everything I went through, the frustration and the pregnancies, I get so frustrated looking back even now. I just can't get how they didn't see what was wrong, even with all the labs and everything they did.
Gena: It was a relief.
Gena: Just to wrap it up, it was really a relief to be finally diagnosed properly.
Mary: Absolutely, and your saga is very much like what a lot of women have gone through. When we come back after the break, we're going to talk about your decision to become a thyroid advocate, what prompted that, and what life is like as a celebrity who's coming out to support a particular disease and its sufferers. We're going to go ahead and take a break, and when we come back, Gena Lee Nolin, star of Baywatch and thyroid advocate, is going to continue on with us.
Mary: Welcome back, everyone. We have special guest, Gena Lee Nolin, who you will remember was one of the major stars of Baywatch, and who has now turned her efforts to thyroid patient advocacy and wellness. Gena is an amazing advocate for the thyroid community. One of the things that I wanted to ask her to share with us a little bit more about was how she decided to become a thyroid advocate.
Gena, if you can share with us a little bit about what inspired you or motivated you to become a thyroid patient advocate and to advocate for the thyroid community and for greater thyroid awareness.
Gena: I think it was just the frustration of being ill for so long and not being diagnosed. After I was diagnosed, I didn't take to Synthroid very well. I was on it for about a year and a half, and I just became really, really ill. That's when I decided to start a support page. I'm a private person. I didn't really want to share too much with friends here and there. Actually, my friends just kind of got sick of talking about thyroid. I decided to start this page, and I wanted other people who were really going through what I was, and that we had something in common, we could share ideas or what works for them. It kind of took off from there. That was the time that Thyroid Sexy was born. A lot of people ask why I named it Thyroid Sexy. It does kind of seem like a strange name, but for me, it was the most unsexy I had ever felt in my life, and being someone that always had to wear the suit and look sexy, everything had to be pushed up and looking good. I decided to just kind of get angry and say, 'Okay, all right, this thyroid? It's sexy.' That was when it was born.
Mary: Tell me a little bit about what you think the reception is of thyroid disease. You and I have talked in putting together our book, Beautiful Inside and Out, and we've talked a lot about the stigma of thyroid disease. There are a few celebrities who have made reference to having a thyroid problem, or who have said, 'Hey, I've got a thyroid problem, but it's no big deal.'
Mary: There really hasn't been anyone who has been willing to come out and become a spokesperson and to really say, 'Look, I'm hypothyroid, yeah. I've had weight gain, my hair has been a problem, I've had challenges, but I'm now here to tell you you can feel better, you can get diagnosed.' Why is it that you think that it is so difficult for other celebrities, and why you felt you wanted to step in and be the person who really took charge and made this issue into a national discussion?
Gena: When I was first diagnosed, I really didn't know anything about it. When I kind of dug deeper, I really educated myself on the disease and what I had to do to try to get as healthy as I could. It was known as a very middle-aged, everyone is 300 plus pounds, and it was just this, this is what it was, this ugly disease. Really, there isn't a face to thyroid disease. There are people suffering from Graves and whatever, if it's Hashimoto's or having thyroid cancer or whatever it is, it's not necessarily that it's a weight issue or a look. That's what I really wanted to stress. Yes, I went through my hypo stages and I still do. I battle with it every day. I think that's what frustrates me the most, that no one has really stepped forward and talked about their personal experience. If they have, it's great. If everyone is having a positive experience and it's working for them, that's wonderful. That's what we all want and what we strive for. It hasn't been that easy for me. I want to help people. I want to take the platform that I've been blessed to have, and to try to really be real and just honest about what I went through. Going to the Playboy Mansion, doing the things I've done, being 175 pounds and dealing with some of the things I've dealt with, that not the normal average person gets to do, sort of thing. That's where I really knew I had to step in and get real. That matters more to me than what somebody else thinks of me in Hollywood.
Gena: It's about helping people.
Mary: I have to applaud you, because having worked in the thyroid arena for such a long time, I've talked with a lot of celebrities who have thyroid disease but who don't want to publicly talk about it or who have downplayed it, or who have really sort of made it a peripheral issue. It's understandable that with some folks, they don't really feel the need to make that their personal issue, but at the same time, there were so many opportunities for people to step forward and really move into this kind of position, and you're the first person who was willing to do that from a celebrity standpoint. Much applause to you for being willing to stand up for us, because I know that what you're already doing is helping get attention, and it's going to be even more so when the book comes out in October.
Gena: Oh, for sure. Yeah, I can't wait.
Mary: We have a question, actually, from a reader who wrote in, Christine. She emailed us with a question and said that she is 45 and she's been hypothyroid for 20 years. She's been on Synthroid for the past 11 years. She's struggling to lose weight, and she's finding that a higher protein, lower carb diet and working out regularly is helping her some, but she's having a lot of trouble with her hair. She's wondering, Gena, if you have any diet or hair secrets or tips that you can share with our listeners today.
Gena: The first thing I did when I was educating myself as to what I can do to live healthy and just feel better overall, was to go gluten free, dairy free, and I'm really struggling with the whole sugar thing, but I have cut a lot of sugar out of my diet. To check your ferritin levels, as far as your hair, your iron. For me, mine was just tanked, and my hair was falling out and thin and really coarse and dry. A lot of times when I would have to go places and do an event, I would just use clip-ins. It would give this illusion of this thick, gorgeous, long, beautiful hair, when in fact it was fake. Keep on with checking your ferritin levels and then maybe taking some sort of a supplement, because that definitely will help your hair. As far as weight, I'm so glad, Christine, that you're exercising and you have the energy to do that, because that's something that I struggle with. I still struggle. I go up and down, and it's just one of those things that eating clean and keeping the exercise, moving it, and eating right, so I applaud you for that.
Mary: That's great, great information for Christine. Gena, you mentioned going gluten free. Some people think that that has to be a really difficult process, but how hard was it for you to go gluten free?
Gena: You know what? The first week was really a shift in my body. I was one that had my wheat toast every morning with a little bit of peanut butter, and it was one of those things where it was in my diet. Cutting it out completely was a tough week, but looking back, I haven't had a grain of any sort of gluten since. I find it easy. There are so many places and restaurants that now carry gluten-free menus, so it's an easy transition. It's mind over matter, if it's going to make you feel better, I was willing to do anything to do that. I was on Synthroid and the synthetic hormone forever, and I was deathly ill on it. I started Nature-Throid. Within three days of switching from Synthroid to Naturethroid, I felt like a completely different woman. My body functioned. I was more alert, and I think it was just the T3 T4 combination. The natural part of it just worked for my body, where just having the synthetic T4 just simply didn't work for me. I think that's why I was so ill with the thyroiditis and all the flareups and everything after I was diagnosed.
Gena: I really just hope people are open to, if you're not feeling right, you're not feeling well, something's wrong.
Gean: Just be open-minded. Try something different, look outside the box.
Mary: Absolutely. We're supposed to be feeling well and living well, not just managing and getting through this. When we come back after the break, we're going to talk about the upcoming book, Beautiful Inside and Out, and again. I just wanted to mention that our sponsor for the show is MyMedLab, which is the premier directed consumer laboratory testing service, so you can order your own lab work. These tests that we're talking about, TSH, free T4, free T3, Theratin, vitamin D, these are all tests that if your HMO or your doctor or your insurance won't cover it, you can order it yourself, or if you want to be prepared to find a new doctor, you can get your lab work done ahead of time. We'll be back in a minute after our break with Gena Lee Nolin.
Mary: Welcome back to Your Health Workshop. This is Mary Shomon, and my special guest today is Baywatch star and thyroid patient advocate Gena Lee Nolin. We've got a couple of callers holding to talk with Gena and ask her questions, so I'm going to go ahead right to the callers. We have Linda from Washington State on the line. Linda, go ahead with your question, please.
Linda: Yes. This is for me personally, but I know it will help a lot of other listeners. I had been on Synthroid for many, many years, and then I switched to Armour Thyroid before they had that recall in 2005. I've never really gotten back onto Armour until yesterday. I wanted to find out, because I know that Armour and some of the other natural desiccated thyroid medications seem to be better for most of us. I hope that you could speak to it and tell us the differences and let us know what other brands besides Armour and Naturethroid and other things that have been mentioned are available.
Mary: Sure. I can go in and jump in on this, and then Gena can share a little bit of her own experience with this. Armour one brand of natural desiccated thyroid, which is the carnosine thyroid, or the thyroid of a dried thyroid gland from pigs that is produced into an FDA-regulated medication. There's also Naturethroid and Westhroid, which are basically the same drug produced by RLC Lab, and there's ERFA, which is from Canada, and then Acella makes a generic version of natural thyroid that's available in the United States, and it's considered to be good quality. Those are the categories of the natural thyroid drug. There are also compounded natural thyroid drugs that some people use with particular practitioners. That's in contrast to what's considered the standard treatment, which is Levothyroxine, and that's the Synthroid, Levoxyl, Levothroid, Eltroxin, Tirosint, the category of drugs. Those are the T4 synthetic only. Gena and I both have ended up after long periods of going through various combinations of medications, on natural thyroid. Gena, do you want to talk a little bit about the difference for you?
Gena: I did start off on Synthroid for about a year and a half. I begged my doctor to switch me to natural, and that was Armour at the time. I did that for probably, I want to say about six months. That's when Naturethroid was introduced to me. I know there's a bit of a difference in the filler, and to me, I just felt that Naturethroid was a little bit more reliable as far as dose. I felt much more alive, not as much of the brain fog. There was a difference for me between the Armour and the Naturethroid, but you know, everyone is so different. Like I've always said, if somebody's doing well on just T4 alone, then don't change, but I wasn't. That's when I made the move. Naturethroid, that was a difference from Armour and Naturethroid for me.
Mary: Thanks, Linda. One of the things people need to know too is that Naturethroid is hypoallergenic, whereas Armour is not. For some people who may be sensitive to some of the ingredients or the fillers or the dyes, that can make a big difference for some people. Certainly I know some folks that have done well on every different brand of natural thyroid, so it's really a trial and error process.
Mary: You have to try the different ones and find the ones that work best for you. We have Liliana from Colorado with a question. Liliana, go ahead. Liliana?
Liliana: Okay, hi Gena. I have a question. I just called you now, so I don't know if you talked about this before, maybe not. My question is, they talk a lot about the amalgam and the silver fillings in the teeth. I wonder if you had silver fillings or you have them now? And if you have them, did you get them removed and did you see any change in your condition? All this referring to the silver fillings.
Gena: Yes. The mercury that I had for my fillings. I had quite a few fillings because I am a sugar freak as a kid. I had them on the upper and the bottom, and it's very funny, it's interesting that you're asking this question, because in 2006, I had them all removed. Obviously, the toxins and that going through the system and the body, that is when I had the worst thyroid symptoms ever, in 2006. Yeah, for sure. Whether Mary obviously can probably give you a better answer as far as how it affects exactly, but definitely I could see the symptoms getting worse when I had them removed and it was in my system.
Liliana: When you had them removed? But then you put the white filling? The white ones?
Gena: The white, porcelains.
Liliana: When that changed did you feel any kind of better at all?
Gena: I think that it was just having all of that removed and drilled out of your teeth. It gets into your system, so it isn't a good thing.
Liliana: Uh-huh.
Gena: Cosmetically, it looks great.
Gena: I had no idea. I was just sort of like, “Oh well, I'll get this done.” At the time, I have to say that I didn't feel better when it was removed. It was kind of around that time when everything flared for me. Actually, my doctor here, Dr. Christiansen [sp], did a test with me with my metals and the things that I have floating in my body, and mercury is high up there. He does provide IVs to detox that out of your body, which I've been doing, so it does help.
Mary: If I can jump in, too, Liliana. One of the things that I think is critical here and that probably because Gena was working with a dentist who may not have been as knowledgeable about the removal of the mercury fillings. A lot of dentists will say, 'Hey, let's take out your fillings. We'll just make them look nicer, get rid of the silver fillings and put in amalgam that'll be matching your teeth.'
Mary: Those are not biologic dentists. Those are not dentists that are doing the holistic work that are removing the fillings for the mercury. When they're doing that, they need to prepare your body. They need to support your immune system.
Mary: There's a whole process that needs to go on alongside the removal of the amalgam fillings in order to help support your immune system, because what happens is you take out all these fillings and you can really release a lot of mercury into your system at one time.
Mary: That may be what happened to Gena.
Mary: Where if it wasn't done as carefully or as properly as it needed to be done by a dentist that was savvy about the mercury issue, it can actually make your symptoms worse for a while. You want to make sure, if you're going to think about doing this, that you work with a dentist who knows how to do this, how to support your immune system, and is a holistic dentist that has knowledge of how to detox from mercury exposure, because that's going to be a really important factor in all of that decision.
Liliana: I have another question, though. What is your TSH value right now, Gena?
Gena: Right now I'm about 1.1, and I'm best one and maybe just a tad lower. That's kind of my sweet spot.
Liliana: Wow.
Gena: When I feel at my best. Uh-huh.
Mary: Welcome back, and I want to again welcome everyone to my show today with Gena Lee Nolin, who was the megastar of the hit show Baywatch and who is a thyroid patient advocate and soon to be best-selling author. Before we jump in to talk a little bit more about the book and the Thyroid Sexy community, we wanted to take a call. We have Heather in Oregon on the line. Heather, go ahead with your question for Gena.
Mary: That's great. Thank you, Heather, for calling. For those of you who want to stay tuned to what's going on with the Thyroid Sexy community, you can log on at facebook.com/thyroidsexy. That's where you'll find Gena's Thyroid Sexy community. We've got a lot of people calling in at the last minute here.
Mary: Let's go ahead and take a call from Jen in Palo Alto. Jen, what's your question for Gena?
Jen: Wow. I just kind of had a question. I have had Graves' disease for about the last five years, and last November I went through thyroid burnout, and now I'm hypothyroid. I've been starting on Synthroid, but I'm just curious because when I first started, I kind of questioned my Endo about the natural versus the synthetic in T3, T4, and his feelings were kind of to get my T4 more stable, and then see how I felt, and then possibly add in Cytomel if needed, or something required, Armour, to go that direction. His feeling with Armour was, he really didn't prefer to go that route just because of the variability in what you can receive. I don't know. I'm not feeling all that great, still. I've been on Synthroid for I guess almost two months. I'm just wondering when is enough time to sort of say, 'I'm still not really feeling well.' When do I revisit this conversation with him? I don't want to go these years of not feeling well on Synthroid. I don't know if that makes sense.
Gena: Can I answer your question? Sorry to interrupt. Now is the time.
Jen: Yeah, okay.
Gena: Now is the time. It's not fair for us to feel unwell and sick and struggle. There isn't another day that should pass by. You should definitely get in, and if this doctor is open to a natural hormone versus a synthetic, I would definitely try that, because it saved my life, literally.
Jen: Right.
Gena: The Armour, like I said, you hear stories that it's not as reliable as Naturethroid. I happen to agree with that. I am with Naturethroid and I love it, because I know what I'm getting with each grain. However, now is the time. I really encourage you to make that appointment and get in as soon as you can.
Jen: Sure. Thank you.
Mary: It's also important to know, Jen, that the majority of patients, according to studies, feel better on a T4 T3 combination, whether that's adding Cytomel to a Synthroid or a Levothyroxin drug, or whether it's a natural thyroid. The majority of people do tend to feel better with the two hormones, rather than just the T4 only. It's something to definitely take up with your doctor, and eight weeks on a treatment is enough time to know whether it's really going to start working for you. I agree with Gena, it's time to get into the doctor.
Jen: Okay.
Mary: And revisit this.
Mary: Thank you for calling.
Jen: Thank you.
Mary: I want to get Janet in. Janet from Cleveland is on the line with a question for Gena. Janet, go ahead.
Janet: Hi, Gena. I have Hashimoto's Disease, and I am currently taking a natural thyroid. I just wanted to know your thoughts if it is possible that my body is attacking the thyroid medication. I feel like my symptoms are getting exacerbated. I'm starting to lose more hair. I didn't know your thoughts, if you've ever seen this before.
Gena: I personally haven't seen that with natural hormones. However, I've always said that some people, they do much better on just the T4. Some people just don't react as well to the T4 T3 natural. If you are struggling and you're having some issues, how do you feel overall, though, as far as day to day? Obviously, your hair, but
Janet: Yeah, my hair. I've also put on close to 15 pounds since I've started treatment, which is kind of unusual because I didn't have a weight problem before, I just was more fatigued.
Gena: Right.
Mary: Let me jump in here for a second, Janet, because, you know, there are some doctors that do believe that for auto-immune patients, that the animal protein that's in the natural thyroid may be an inflammatory trigger factor that could actually worsen the inflammation. It's a controversy. Not all the doctors agree - some of them think it's not a problem, others are very strong about this. If you are one of the people who may be experiencing inflammation from either the protein or some sort of filler or ingredients, it might be a good idea to think about a different medication. Really, ultimately, the best medication for each of us from a thyroid standpoint is the one that has faithfully worked best for you.
Mary: That may be any of the combinations, any of the different brands or generics. Each person finds what works best for them. Thank you for calling, Janet.
Janet: Thank you.
Mary: We appreciate your call.
Janet: Yeah, thank you folks, for your help
Mary: Thank you, thank you.
Gena: For sure. Take care, Janet.
Mary: All right, I want to go ahead, just as we're getting down to the close of the show, and just let people know how they can get in touch with you and follow you, Gena, on the web. Can you share again your website and your Twitter, and any other locations that you want to mention where people can find you and your thyroid advocacy?
Gena: Oh, boy. Just about everywhere. On Facebook I have Thyroid Sexy, health and wellness, so that's easy for you to find. I also have an official genaleenolin.com website. There's one standing, but I'm actually right now getting one built that will be a little bit more professional and have my store. I did just open a Thyroid Sexy store that's available on my Facebook Thyroid Sexy, which is so cool. It's long overdue, but it's great t-shirts and hoodies, and we have all sizes. We had a little bit of a glitch yesterday with the shipping and all of that, but now it's completely back on track. I think we might expand and do international shipping as well, so I'm super excited about that. So, Facebook and my website, also that can take you to a page called WhoSay, and that is a celebrity invitation page, which is great - a lot of personal pictures of what I'm doing, and also links to Thyroid Sexy and to my website.
