Dr. Vedrana Högqvist Tabor, Guest
Taking Action Against Hashimoto’s
My name is Vedrana. I am a scientist, researcher and entrepreneur. I am an amateur stand up comedian and I am a Hashimoto’s patient. It runs in my family, and has profoundly affected all of our lives.
As a Hashimoto’s patient my days are not always the best or the easiest. Throughout the years, I took up certain routines, recorded my symptoms, experimented and through that I got to know my body really well. Now I can easily anticipate the flare-up and the extent of it. It took time, patience and dedication to get here, but even now things are sometimes far from perfect. I had tremendous support from my life partner, my family and my friends. I would not manage to do it without them, not in the long run. They help me live my mantra, “My condition is not my excuse, it is my motivation”.
Hashimoto’s Is Written In Our Genes
Hashimoto’s is present in our bodies probably since the start of our lives, and it affects our bodies long before it is diagnosed at a doctor’s office. It attacks our thyroid as well as the other tissues. It gets triggered by a seemingly innocent and sometimes healthy lifestyle.
This is my major learning: Hashimoto’s is not a single organ disease; it is a systemic condition affecting our entire body.
Hashimoto’s manifests itself in the most medically accepted term as an underactive thyroid, and for that reason, the treatment approaches are geared towards the thyroid. But Hashimoto’s is an autoimmune disease with more than one well-defined target organ and should be approached as such.
My Rough Start And Self-Diagnosis
The beginning of my diagnosis path was rather confusing and frustrating. I had problems with my digestion for as long as I can remember. When I was younger problems came and went in what I thought to be a random fashion.
At the same time, I had most of the underactive thyroid symptoms for as long as I remember. But nothing ever showed up on the blood tests, and this will turn out to be the same at the time of my diagnosis. My TSH levels were close to a perfect 2.0. Is it actually a perfect value for all of us?
My condition worsened about five years ago, as I was entering my mid-thirties. I had about a year of bad digestion and diarrhea. I was frustrated, and struggling to keep the high performance at work and a smiley face for my colleagues while not revealing anything of what was going on.
I tried to figure out what was happening, but it seemed I was fighting the system: my GP was not as supportive as I wished them to be. It was also quite bad not to be able to talk to people about it. Mostly this was a self-imposed exile — I was embarrassed to talk about my bowel movements and not knowing what was causing it.
A decision to take things in my own hands was the best I could have made, and I should have done it earlier. It was an easy start: knowing my family has thyroid problems, I insisted on a more thorough medical check this time. I found a good lab (approximately 2000 km away) and flew there to be tested. I also had a great dinner in one of the local restaurants to celebrate the diagnosis.
The results were very clear: my TSH was still normal, but levels of both of my antibodies were off the charts. I tested for the food allergies, and realized I would have to change my eating habits drastically. I was happy; perhaps that is not the most expected feeling at the time of the diagnosis. But, I was happy to be in the know, because I could start acting on it.
My non-supportive GP shrugged, stating, “Yes, you have Hashimoto’s. Food has nothing to do with it. I will write you a thyroid replacement hormone prescription.”
I realized that the GP did as best as they could. There is not enough scientific knowledge on the condition.
What Is The Problem With Autoimmunity?
Hashimoto’s is one of the less researched conditions. Charts and recommendations GPs have at hand in their offices are outdated and severely lacking information. They treat underactive thyroid, which is a consequence of years and decades of self-destruction, instead of trying to battle the root cause. Why? Because there is not enough clear-cut scientific evidence for any other treatment.Hashimoto's is an autoimmune disease with more than one well-defined target organ Click To Tweet
Autoimmune diseases are complex in their biology, in their symptom variety, as well as treatment approaches.
Imagine how our immune system has evolved through our long humankind history, and enabled us to survive the many challenges we faced: bacteria, viruses, dirt, poisons, worms and other parasites that inhabited our bodies. Then all of a sudden we became modern human beings, washing our hands, having a clean environment, having antibiotics to fight bacteria, having vaccines to fight off viruses – a tremendous and important progress enabling us to live longer and overall healthier life.
All of a sudden our immune system did not have as much to do as it had before. And this is the system that perfected in killing and removing the harmful bits from our body. A clean environment paradoxically brought up many of the seasonal allergies, and probably played a major role in the evolution of autoimmunity. So, it might seem that supergenes that allowed us to survive in the wild are turning against us. Perhaps this is true. We need to research it more and prove the hypothesis.
Autoimmune diseases age our bodies faster too, so they are definitely not a good thing, and have to be considered as what they are: a risk of a whole body, not a single organ disease or failure.
Tools For Patients To Sort Out The Lack Of Data
Lack of research is one problem. lack of good research is the other issue. One of the recent studies has shown that out of close to 4000 peer-reviewed scientific manuscripts, only 16 pass the standard by which the research can be used to actually make any valid conclusions. This is years’ worth of data lost.
How can we compensate for such a lack of data? By creating a pool of big, diverse and inclusive data on symptoms, disease progression, and advice on management.
How To Achieve This?
Through promoting a sharing economy of health. Us patients should have a way to record our experiences and quantify them. This will facilitate information exchange with healthcare professionals. We can learn from the previous experiences of other people. This will save us all a lot of time. We need to work on recognizing early symptoms. As a patient, I would like to know when and how to increase my health awareness and become more proactive in managing my thyroid condition.
A Smartphone App For Hashimoto’s
This is why I am developing an app with my team at Boost Health. Our aim is to turn the data people record into an actionable input, providing all of us a great tool to achieve and maintain healthy lives and prevent all of the doings of the autoimmune diseases. We started collaborating with researchers, with the goal to bring awareness to the condition and also to use the knowledge and the expertise of the research community when building a tool for patients.
Sharing is my passion; I donated bits of my body for science. I am certain that the knowledge coming from research on each and every one of us can have multiple benefits for many, if not all of us.
The app is now in beta mode on both iOS and Android, and we are testing a few basic assumptions. We also have a newsletter where we publish reviews of peer-reviewed scientific literature, to make it accessible to everyone, no matter of their education background. We also run brief surveys to help us all understand how unique we are, and what shared features of the disease we have.
This is our starting point. We have more ideas we are excited to test, always by combining science, good and trustworthy data and benefit for the users.
My dream is to build a product that would help people with a diagnosis lead a healthier life by providing them with top-notch and up-to-date information and by converting new research results into tracking options, analytics and insights.
At the same time, we would like to facilitate the doctor’s workflow. One of our wishes is for doctors to get live updates on the disease prediction charts, and for research to have a better, more global, diverse and inclusive reach.
We are looking for beta testers of our app.
About the Author
Dr. Vedrana Högqvist Tabor has a PhD in molecular biology, has spent 13 years researching different aspects of cancer and cardiovascular diseases in several European institutes, including Karolinska Institute in Stockholm, Sweden. She has traveled and lectured at Columbia University, University of Oxford, as well as WIRED Health and TEDx. As a researcher she has received grants and awards from Sweden, Germany, the EU and US. She has spent the last two years as a director of scientific research for Clue. She is a mentor for budding startups in biomedicine and is building her startup Boost Health in order to tackle autoimmune diseases. For more information about Boost Health, click here and check out the page on Facebook.
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