According to the American Thyroid Association, over 12 percent of the U.S. population will develop a thyroid condition during their lifetime. However, up to 60 percent of the 20 million Americans who have thyroid disease are unaware of their condition.
Victoria Gasparini, founder of The Butterfly Effect Blog, which began as a result of her own thyroid condition, and known on Instagram as @TheFedUpThyroid, shares her story and covers the following:
Learnings she gleaned from the patients she has connected through her blog which would benefit both patients and the medical community alike
Realistic suggestions for how to manage thyroid disease in the short term and over your lifetime
Tips for knowing what information to trust online
Transcript
Georgie Kovacs: Tell us your story.
Victoria Gasparini: I was diagnosed when I was 14, and given a pill; told to take this for the rest of my life and things will be normal. And I listened to that. And for the most part, I didn't have many issues with that.
When I was 16 years old, I had lost one of my close friends from growing up. Unfortunately, from there, things slowly started to decline with my health, but it was very slow. Most doctors suspected I was grieving and thus, I was diagnosed with an anxiety disorder. Yet in high school and dealing with this grief, I was losing my hair, losing weight and gaining weight and losing weight and gaining weight. I was all over the place.
From there, it progressively got worse. By the time I was in my second year of university, it was like a quick downward spiral. In the matter of a month, I had gained 17 pounds. I had bald spots on my head, I had freezing cold fingers and toes. Cold intolerance, heat intolerance, it didn't matter the temperature. I was excessively sweating. And then in addition to that it was this chronic, incredible fatigue, fatigue that I can't even really put into words. And I couldn't get through my classes; I couldn't get through work. And at the point I was like probably 19 or 20 years old. And the last symptom that I had that really made most of the difference for me was the brain fog. It would be like five o'clock on a Tuesday night and I work every Tuesday and I'm at home, I get a call from my manager and they're like, where are you? I completely forgot that I had work.
And then even little things like going to put a cup down on the counter, and I missed the counter completely. At first it was funny. We’d find the goat cheese in the little Ziploc drawer instead of in the fridge. The joke was that I was clumsy and forgetful.
Then one day, I was driving home, and I saw that the light was red, but I didn't process it fast enough. I go right through it. Thank God, nothing happened, but it was knowing that I was that close to it. Something was so wrong here. This was not me anymore.
From there, I did my own research and everything pointed to a thyroid condition. In my head, it was an easy fix. I imagined going to my doctor, being prescribed an increased dose of medication, and then life's good again. I can be a functioning, happy adult again and go to school and be successful.
Well that didn't happen. I went to the doctor and was told my thyroid was fine. Instead, I was told I was depressed and given an antidepressant and told to come back in six months.
This is what inspired me to start a blog and my social media and connect with people all over the world who have gone through such similar things.
Georgie Kovacs: How have you figured out how best to manage your thyroid condition, especially with the legitimate stresses of day to day life?
Victoria Gasparini: I did not find answers in the conventional system at first. I had read a book by Dr. Natasha Turner, who is a naturopathic doctor in Toronto here. The book was about supercharging your hormone health. A lot of it had to do with thyroid health. I looked her up and got an appointment with her clinic.
The experience was absolutely fantastic. First of all, it wasn't a 10-minute appointment like in the conventional system. It was almost two hours going over everything. I've never felt so heard. She didn't tell me that it was all in my head. She confirmed that I was right, the symptoms are related to thyroid health, and that we need to do further testing.
If that one TSH level that your conventional medical doctor tested didn't show a problem, then we have to keep digging. So we did an entire thyroid panel, and sure enough, my T3 was as low as can be. You need T3 to feel like a normal functioning person. This finally explained the mental aspect of it - the depression, the not being able to handle stressors in my life. It explained the brain fog and the fatigue. We changed my medication to a combination therapy and changed my diet. I got rid of gluten, dairy, soy, corn, rice, and everything else that was bothering me. Within a month, I dropped 15 pounds. My hair started to come in. I had this clear mind; I could see the world.
I knew that things could get better from here. And that's when I created my blog. It started as a diary, and now it’s a community. We're all here and we have this amazing big community, and really, it was naturopathic medicine that got me there.
Georgie Kovacs: Let's talk about the themes that you're seeing given the interactions as a result of your blog.
Victoria Gasparini: A big one is people not being able to get a diagnosis. Really, it shouldn't be that hard to get one, but it is in the conventional model, because again, they're often only testing TSH.
The other theme that I always see is people who are diagnosed with depression. Many are told that they have bipolar disorder, depression or anxiety. A recent study said that 20% of people with bipolar disorder are hypothyroid, and they're not treated for it. So it really makes you wonder.
The other problem is that because we're women, it's often blamed on the hormones, which it could be, but nothing's ever done about the hormones.
Georgie Kovacs: Now let’s talk about solutions for being diagnosed and treated with a thyroid condition.
Victoria Gasparini: I understand that seeing a naturopath is not attainable for everybody. And so I think being prepared going into any doctor's appointment is key. For me, it's do your own research. Try to figure out the things that you really relate to. And ask them, I always say remember that you are the customer. A full thyroid panel is so important, especially if you're testing for a diagnosis. You want to test the TSH, Free T3 and Free T4. If they don't check the antibodies that's not necessarily a red flag. This is because it's out of the scope for a lot of MDs. They learn the very basics of thyroid disease. We give T4 replacement if somebody has high TSH, but a lot of times they stop there. I would suggest finding a doctor that sends you to an endocrinologist when they see that those levels are off, whether it's just the TSH or if it's the thyroid hormones, send you to an endocrinologist to look into your antibodies.
Also understanding something that my naturopath calls a three-legged stool. So there's the thyroid, reproductive health, and the adrenals. Usually one of those is going to be off when you're feeling all of those symptoms.
So if your thyroid is still coming up okay, which doesn't necessarily mean optimal, but if your doctor’s telling you it's okay, then there's still other pathways to look into. You want to test your hormones like estradiol and progesterone. The symptoms of low progesterone or estrogen dominance often reflect those symptoms of thyroid disease. So that's really important.
It's hard to talk about adrenal health with your MD, but that's something that I would still bring up - talking about cortisol, your stress hormones, and how you can deal with those things as well.
My MD told me that she did not know a whole lot about desiccated thyroid, which is the combination treatment that I'm on. She loves that I’m so passionate with my naturopathic doctor. They collaborate as needed.
And I think that that is something that I also look for in an MD. If your MD is willing to send you out to look for answers, then they're probably on your side.
Georgie Kovacs: There is so much information shared on the internet and through social media. How does one know which to trust?
Victoria Gasparini: Misinformation is huge and running rampant right now. You need to find a blog that uses references, and you need to look at those references. First, the references need to be journaled sources. There can be a couple in there that are from other doctors, but if you find the information interesting and relatable to you, you have to do another search. You can't just print off that blog and go to the doctor because you are going to get laughed at.
I’d also recommend you find three quality sources to back it up. One good source doesn't really mean a whole lot. It could have been based on a very small study.
Georgie Kovacs: What other challenges have you seen and what are your recommendations for how to overcome those?
Victoria Gasparini: I also see challenges with disparities in healthcare, which is something that a lot of us don't focus on. Not everybody has access to a naturopathic doctor, whether it be a financial issue, or whether it be just there's no regulated naturopathic doctors wherever they live.
Another thing was food. It's easy for me to say that there's so many gluten free options out there and to buy organic fruit and vegetables. But not everybody has access to that. And I've really learned that through my blog that it has to be individualized. That's a huge challenge to overcome.
For example, you don't need to take 15 different supplements, but also taking five cheap supplements is probably pretty useless. So let's get rid of those. We'll focus on fruits and vegetables and eating healthier foods. If it's not organic, we'll figure out a way to wash your fruit really well. Those little things make people feel like they're heard. And it's more likely that those people are going to make those changes when they feel hard. It's so easy to throw your hands up in the air and say this is too much for me.
I remember a naturopathic doctor lecturing and stating that we’re going to have patients who we can give anything to, and they're going to listen. But we’d also have patients that it's a really, really big struggle to get through to them. And so instead of getting rid of this and remove this, and by this, it's as simple as before you eat your cereal in the morning, have a cup of blueberries and a glass of water, go for a walk. And if you can only get down the street, great. Little things like that which everybody can do are so key.
Another theme is, probably maybe on a smaller level, not getting the options when it comes to prescriptions. It's often a one size fits all sort of thing. Everybody takes the same drug, and you should be fine with that. So I think that's another big challenge or theme that we go through and that I see on my blog, especially lots of people are saying, it's great that you're taking desiccated thyroid, but that's not an option for me. Or even things like I've talked to my doctor about testing my T3 and he says no, that's not necessary.
Georgie Kovacs: So how do you get past a situation like this?
Victoria Gasparini: There's a couple of reasons. It's definitely about affordability. If you don't have the insurance for it, or if it's not covered by insurance where you are, then it's an issue.
Desiccated thyroid has a bad reputation from the past. Desiccated thyroid used to be the only thyroid treatment that was available before synthetic T4 came about, and it wasn't regulated. So there was no way to know that every time you were taking your medication, you were getting the same amount. And we have discovered with science that it's key to be consistent with thyroid hormone. It has to be the same every single day or it's going to be all over the place, your health is going to be all over the place. And so I understand that, and I do know, I believe it was in the 70s or the 80s. T3 became very controversial. Even as a synthetic T3, doctors were using T3 to help patients lose weight. And it was working, except that a lot of people ended up with heart attacks, which is a side effect of too much T3. But my answer to that is that there are side effects to all medications that you're going to take. And if you're taking something irresponsibly, then it's going to cause some problems for you.
Desiccated thyroid is regulated now. So when I take my desiccated thyroid medication in the morning, it's the same amount every single day, it's a little bit of T3, because you only need a little bit of T3, and it's mostly T4. And it comes from pigs so it's just mimicking the exact function of the thyroid gland.
So yes, its finances definitely because it's a very expensive treatment. They see people doing really well on it, everybody wants to be on it. And Synthroid is very easy to produce. So it's very cheap. And it's the common option for doctors.
Georgie Kovacs: What about management of a thyroid condition?
Victoria Gasparini: Hashimoto's Disease is a chronic disease and chronic is lifelong. And so it isn't just a one-time fix. And I had to learn that the hard way.
When I started taking the medication that I'm on and changed my diet. I had never been so happy in my life. I felt like I could take on the world. And within a year of taking it, I had achieved remission. My antibodies were nonexistent on a blood test, it looked like I never had the condition, which I was told was impossible to see. And I honestly felt like I had finished the race. I felt like I could take over the world.
And then my antibodies just skyrocketed a year later, and they are higher than they've ever been. I realized that this is lifelong..
However, if it makes people feel better, when you've gone through those hard parts, you've gotten your diagnosis, you've gotten on the right medication, you have the tools in your toolbox to get through the flare ups to get through those bad days. And it goes from a bad life to a couple of bad days. It's not all the time.
I know when it's coming on, I can feel when I'm about to come crashing down. And I know what to do in those situations. It is manageable.
For me, I think the hardest part is dealing with stress. It's.. I'm lazy. When it comes to that, it's easy for me to change my diet. It's easy for me to cut things out, but when it comes to sitting for two minutes and meditating, I don't want to do it.
Georgie Kovacs: By the way, I have to laugh that you called ‘not wanting to relax,’ lazy. Just wanted to point that out..
So last question, Victoria. What is your greatest hope for women's health?
Victoria Gasparini: My ultimate goal is to have a health care system where women feel heard, whether it's conventional, or naturopathic, or whatever type of medicine somebody wants to go into. I just want women to be able to say, “Yep, you know what? I can go to my doctor. And that's a safe place.”
In order to get there, it's conversations like these, and it's getting women to speak about their experiences. The more we talk about the things that are going on in the healthcare system, and maybe the manipulation or the gaslighting that we felt, the more likely we are to see change in health care, especially for women.
But it's systemic. It's ingrained in the system, so it does take us standing up and sharing our stories. Hopefully, we can create a system that values women's health.
Georgie Kovacs: Thank you for working so hard in figuring out what is going on with you and now spending your time and risking your flare ups so that you can be even more knowledgeable to help others who are struggling. I can't wait to watch you continue to flourish. So thank you again, Victoria.
Victoria Gasparini
Thank you so much for having me. I loved it.
Resources
The Hormone Diet by Natasha Turner
Spotify Playlist on Thyroid Disease
Check out all of Fempower Health’s resources on Thyroid Disease.
Subscribe to the Fempower Health Podcast on Apple Podcast, Spotify, or anywhere else you may listen to podcasts.
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About Victoria Gasparini
Victoria is a naturopathic medical student at the Canadian College of Naturopathic Medicine, as well as a patient advocate for thyroid and autoimmune disease. She is the founder of The Butterfly Effect Blog and instagram, @thefedupthyroid, where she is dedicated to providing research and patient-patient advice on healing and dealing with thyroid disease.
About Fempower Health and the Founder
Georgie Kovacs, is the founder of Fempower Health, the go-to resource for all things women health serving women, their providers, and companies looking to build/improve on products for women. She also hosts the Fempower Health Podcast, where she interviews experts to help women better understand how to navigate their health both day-to-day and in partnership with their providers. Her mission is to minimize the years many take to seek proper diagnosis and treatment.
Georgie founded Fempower Health after her first-hand experience with infertility and endometriosis. Leveraging this experience along with her 20+ year tenure in the biopharmaceutical industry and consulting, she leads this movement to empower women. With limited research dollars and women’s “training” to grin and bear it, both women and doctors are in the impossible position to diagnose and treat conditions with little information. Women deserve more and better information, insight and innovative health solutions.
**The information shared by Fempower Health is not medical advice but for information purposes to enable you to have more effective conversations with your doctor. Always talk to your doctor before making health-related decisions.
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