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“Dealing with thyroidectomy? I built an app!”
The creation of ThyForLife was the silver lining of a challenging life hurdle for Natalia Lumen, Founder and CEO of ThyForLife, who found out that she had thyroid cancer in 2017 during a regular wellness check.
“Three years ago I was building my career as a management consultant at Bain & Company when thyroid cancer caught me by complete surprise. It came out of nowhere! Being on the operating table twice was a lot to deal with, but what came next was even more daunting.”
After struggling to manage her hormone levels with numerous daily medications and monthly blood test results, Natalia decided to create an app to help thyroid patients have all of this information at their fingertips.
“I come from a family of entrepreneurs, and as a result, being a self-starter came naturally to me. This natural tendency helped me immensely in my career as management consultant, advising CEOs of Fortune 500 companies globally. However, when my personal health crisis hit, my focus changed to the millions of people around the world who struggle with an issue that I was completely ignorant about before. I knew I had to do something about it.”
According to the American Thyroid Association, more than 12% of the US population will develop a thyroid condition during their lifetime. Unfortunately, up to 60% of people with this condition don’t know they have it. Thyroid disease occurs when the thyroid gland (which is in charge of regulating the body’s metabolism, heart rate, blood pressure and body temperature) produces hormones above or below optimal levels. This can lead to a host of different symptoms, such as fatigue, increased heart rate, headache, depression, weight gain or loss, and sleep deprivation. If left untreated, it can lead to an increased risk of heart problems, mental health issues and even infertility.
“I’d love to share with you what the key pain points are for a thyroid patient and why it’s so important for us to do what we do, and do it well,” shared Natalia. “Imagine having to rely on daily medication to sustain your life. If I stop taking thyroid hormone medication, I essentially deprive my body of a critical-to-life hormone and die. Brutal, right? Medication has to be taken at the same time every day, at least four hours after and one hour before any food intake, and at least four hours before any calcium. When I take my medication in the morning, this means no cereal with yoghurt or coffee with milk. No multivitamins and no breakfast within an hour of waking up. Religiously taking a pill once a day is not as easy as it sounds.”
A mobile app is even more compelling because of the need to track all one’s blood work results.
“In my case, I have had to do blood work every few months and track essential hormones, such as TSH (Thyroid Stimulating Hormone), Free T4 (Thyroxine) and Free T3 (Triiodothyronine), in order to establish what dosage of medication I should take. It’s extremely complex to figure out for someone newly diagnosed, and often still a struggle for those who have been coping for years. T4 substitute drugs are the 4th most commonly prescribed drug in the US (after pain and cholesterol medication). They are the main replacement medication for low thyroid levels and reduce the amount of TSH secreted by the body. The higher the medication dose, the more it suppresses the release of TSH. Too much T4 (either the actual hormone or substitute drug) makes the person hyperthyroid and too little makes one hypothyroid. The swings to get to the optimal level are not easy to handle. Over one’s lifetime, the dosage needs to change due to changes in lifestyle, weight changes, pregnancy and other factors. It’s not a one-time fix.”
Hypothyroidism forms the majority of all thyroid conditions, and primary care physicians recorded it as the 6th most common disease in the US, with over 3 million new patients being diagnosed every year. Additionally, a conservative assumption estimates over 150,000 people in the US who have their thyroid removed every year.
Thyroid patients are highly dependent on labs for conducting their blood tests, however many labs do measurements differently from each other. There are also different standards between healthcare systems and even between doctors. The other complication is that different labs have different measurement units.
“I’ve had my bloodwork done in Singapore, Switzerland and Canada where I’ve lived over the past years. Additionally, in Mexico and Ukraine while traveling. It’s hard to compare my measurements since different countries use different units, such as pmol/L and ng/dl, and reference ranges. I really wanted to be able to reconcile my measurements as I changed countries and doctors, and this is what we built at ThyForLife.”
During ThyForLife’s customer research, a user also confirmed, “An app would be awesome as we move internationally a lot and labs use different units, having it automatically sync with a little graph function.”
Natalia’s primary research continued at internationally acclaimed events.
“In 2018, I attended a Thyroid Patients Survivor’s Conference (ThyCa) in Chicago, US. One of the key learnings there for me was that patients really value having a community of others who are going through a similar journey. It was powerful to see the relationships forged among the attendees, who told me how essential it is for their mental health to be connected with others in their shoes. I feel the same way. This is why we are going to create a community at ThyForLife, not only for patients who have dealt with cancer, but also for those with other conditions that are slowly stripping away their lives and for whom a sense of a community would be tremendously helpful.”
Mark Zafereo, MD at the University of Texas MD Anderson Cancer Center mentioned, “For patients, ThyCa conference really gives them a chance to be part of the community and not feel alone in the diagnosis, to hear the stories of other patients, to get that support. I encourage all of my patients to get involved.”
Natalia continued, “I’d also love to debunk the myth that thyroid cancer is ‘good’ cancer because of high survival rates. It is a common misconception that ignores the impact it has on one’s quality of life, which can be significant for many. Going through radioactive iodine treatment that kills remaining thyroid cells increases the risk of secondary cancer due to one’s exposure to radiation. According to the National Cancer Society, up to 30 percent of patients deemed disease-free after initial treatment will develop recurrence (metastases) 10 to 20 years after treatment. While patients find ways to cope with the new normal, let’s not minimize the journey that the patients are going through behind the scenes.”
“I’ve spoken with dozens of people in my shoes who have all shared the pain of trying to keep track of their test results using different methods from physical pieces of paper to using their email history. Many created Microsoft Excel spreadsheets and have shown me their own versions over the years. The challenge of keeping track of everything is one of the easiest ways for thyroid patients to relate to each other.”
“The worst is when two doctors give different advice. One says increase your meds, the other says the opposite. I personally faced this situation and the only way to describe it is being completely helpless. Not even doctors agree on your course of action. That’s why our goal at ThyForLife is to help patients take control of their own data as it is extremely helpful to take ownership of the process and make informed decisions with their medical advisers. It’s an art as much as it is a science. I really want to help everyone in the thyroid community to have an easier life. We have a lot to deal with already,” said Natalia.
In the near future, ThyForLife is planning on adding additional functions so users will be able to connect with other members in the thyroid community, set reminders for doctor appointments and access telehealth consultations.
“Together with 50 of our beta users, we created a core solution to keep track of the essentials, such as bloodwork, medication and weight. Our users have told us how important it was for them to be able to normalize blood work results from different labs on a single scale, so we built this solution for them as well,” said Natalia. “We will also be adding the thyroid tracking app to the iOS AppStore, so users will be able to track their thyroid health regardless of what platform they are using.”
We are also in the middle of creating a strong advisory board from all over the world that has a mix of backgrounds, such as endocrinology, tech, insurance and data analytics. Additionally, we have a team of six multidisciplinary interns coming from all around the world to help our cause during the summer.
They say it takes a village to raise a child, but we’ve been even more fortunate as we build our company – we are being raised by a community around the world.
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