Updated March 10, 2015.

Award-winning documentary filmmaker Maggie Hadleigh-West went through three decades of poor health, unexplained symptoms and misdiagnoses, before discovering that she had a thyroid condition. She has transformed her own frustration into a documentary film, currently in production, called “Sick to Death!”

The project, with early funding awarded by the Guggenheim Foundation, and March 2015 Kickstarter campaign, is a bold initiative and call to action for the conventional medical world, as well as validation for thyroid patients.

Maggie Hadleigh-West asked me early on to be one of the volunteer advisors to the film, and I’ve had the opportunity to meet and be interviewed by Maggie.

In this Q&A, I’m sharing more about Maggie’s experiences, objectives and thoughts in producing this documentary film, and in helping to make the thyroid community more aware of the issues behind “Sick to Death.”

Mary Shomon: Why do you think a documentary about your struggle with thyroid disease is needed?

Maggie Hadleigh-West: I think film can be a very powerful tool to bring attention to an issue. Obviously, there are many issues surrounding thyroid disease, and, in my opinion, the best way to tell a story is through a character – it’s how audiences relate to the story, and that’s what they care about. As shocking as it was to discover, people can really relate to my story, because it’s a pretty typical one among thyroid patients. So, I’ve made myself a character in Sick to Death!, because I understand myself and my experience as a metaphor for other thyroid patients and their experiences.

Additionally, I was finally put on the right path through the assistance of the late Dr. John Lowe in Texas, who then suggested that I get your book, Living Well with Hypothyroidism,which has been instrumental in my health process. We patients need as many voices and vehicles for sharing information and creating change as possible, and I’d like Sick to Death! to take part in that, and be among all of the meaningful resources that have been created by patient advocates.

Mary Shomon: What's been your own biggest frustration about your thyroid condition?

Maggie Hadleigh-West: That's a tough question, because I've had a lot of frustrations with thyroid disease over my lifetime including: not being diagnosed with Graves’ disease until I was 32 years old, getting very little help, taking inadequate meds for twenty years, and then the endless self-diagnosing, just trying to figure out what the hell was wrong with me – even after the diagnosis.

Another big one is accepting the reality of my health and well-being, the day-to-day life with this health challenge – something I’ve learned to live with, yet always try to change and improve. I've come to understand that it's a mercurial dosing issue, and that it also requires medical lifestyle practices like avoiding thyroid-suppressing foods, consistently seeing doctors, staying current with blood panels, keeping my own health records, taking dozens of prescribed supplements, keeping records of my symptoms and overall health, and constantly advocating for myself – even in the face of enormous discouragement.

This is all in addition to practicing the typical healthy lifestyle – regular exercise, a good sleep routine and a balanced organic diet. It's a fine line that a lot of us walk – particularly if you have no thyroid at all.

Mary Shomon: Why do you think a documentary about the struggle with thyroid diagnosis and treatment is needed?

Maggie Hadleigh-West: It’s a disease that’s super common, yet people (and even most doctors) don’t understand it, don’t diagnose it, and don’t treat it properly – and millions of people are suffering as a result.

Patients are being denied options of pre-existing medical precedents – such as natural medications, T3 supplementation, accurate and in-depth lab testing. Symptomatic and clinical diagnosis has become obsolete. Meanwhile, current published medical research clearly and distinctly exposes ongoing complications, symptoms and progression of thyroid disease, as a result of standard thyroid treatment. This is all criminal in my opinion and the public should know it’s happening so we can all help each other.

Seeing struggle and conflict on film – rather than reading about it or hearing someone “complain” about it – can help bridge the gap between those that are completely unaware and detached from the issue, and the actual issue and the people it affects. I think Sick to Death! will help people understand things in ways other mediums cannot, and it will assist in affecting change. I see Sick to Death! as a good way to address all of those things. I think it will help people, especially doctors, understand thyroid disease, treat it, and care for patients in a meaningful way.

And, although the project includes a feature documentary, it’s also an interactive website project that makes important “missing information” available for patients – which has always been a main priority in both the film and website, but could be addressed immediately on www.sick2death.com.

Mary Shomon: What is your biggest challenge in making this film?

Maggie Hadleigh-West: I think I’ll probably confront the biggest challenges down the road once Sick to Death! is complete, but I have already faced some significant obstacles, most of which revolve around my health.

Making a documentary is a super time-consuming, emotionally-intense, high-pressure, and an EXPENSIVE proposition. I wasn’t sure if it was where I needed to channel my energy. I honestly felt like I should focus on my own health. However, the injustice that permeates this issue and its impact on millions of individuals was the tipping point for me, and deciding to make Sick to Death! was absolutely the right one for me.

This project has also helped me find crucial resources for my own health, like Dr. Kent Holtorf, Dr. David Borenstein, and Dr. Michael Friedman – all of whom are featured in Sick to Death!. These particular contributors (and others) came directly through you, and I am forever grateful for that and cannot wait to share their incredible talent, brains, and dedication with the entire thyroid community.

Mary Shomon: What has surprised you about the project?

Maggie Hadleigh-West: I have to say that I was absolutely dumbfounded to realize that my experience was the experience of so many other people – going decades undiagnosed, and then receiving so little information about what the diagnosis is and means. It’s just absolutely crazy and outrageous. It’s not uncommon for a person to go 20, 30, 40 years – or even a lifetime – without being diagnosed, when it’s actually fairly easy to do. It’s also shocking to learn that when someone is lucky enough to get diagnosed, their doctor may not mention the diagnosis, or really explain what it means. The fact that these situations are actually typical -- well, it’s just wrong.

Mary Shomon: You have been very open about how the film will address what you consider to be a corrupt system that is misdiagnosing and mistreating thyroid patients. How do you think the conventional medical world will respond to the film?

Maggie Hadleigh-West: I definitely expect for there to be some pushback from the medical world – because no one likes to be told that they’re wrong, or that their medication undertreats – but I think there will be some other interesting reactions, as well. There are dozens of well-respected doctors and experts in the film, talking about what’s going on and what’s wrong with these medical and health practices, and they make it really hard to deny, or even argue with, both the reality of the issue and the film’s credibility. So I’m hoping other doctors and experts will be intrigued, interested and even inspired to do things differently.

All of my movies have been “controversial” in some way, but I think that’s mainly due to the inherent nature of the subjects, which often reflect big, systemic issues in society that people don’t always want to address. But even though it’s never my intention to create controversy, it can be a very effective tool in garnering interest in the film and sparking a bigger dialogue.

One of the things I've recently realized is that the film will be perceived as “quirky,” because apparently I’m a quirky person as it relates to being a “health seeker,” and so I think the traditional medical world and the average patient may be surprised by my approach to filmmaking and activism.

Mary Shomon: What do you hope to accomplish with Sick to Death!?

Maggie Hadleigh-West: A lot!

The most important goal of the film and the project is that people understand there are big problems –problems in the world of thyroid disease, problems with the lab tests, problems with the diagnosis, problems with the medications, problems with the doctors, problems with the treatment, problems with the system at large-here in the US and worldwide, and that many of the problems are a direct result of special interest influence.

If all goes according to plan: Sick to Death! will screen in classrooms, at medical conferences across the globe, and at other annual professional meetings, and will be included in medical programs’ curriculum and offered as a Continuing Medical Education (CME) credit.

We will also launch outreach and advocacy campaigns centered around the film that will seek change in big ways, too:

• In terms of practice, by shifting focus in diagnostic methods from labs to clinical diagnosis, and making it more patient-centered, in general; 
• In terms of treatment, by spreading awareness about other effective treatment options and making them more available to patients; 
• In terms of education, by broadening notions about health and wellness with more integrative and holistic medicine in schools – because the thyroid is not isolated from the rest of the body, as we that suffer from it know, so medicine shouldn't be either.

I hope to give the big pharmaceutical companies that are making the levothyroxine drugs a swift, small punch in their “financial belly.” I hope to make a lot more people aware that the levothyroxine drugs don't work for everybody and that natural desiccated thyroid is a viable alternative and that many patients also do well with T3 supplementation.

I hope to force the American Thyroid Association to retract their most recent, utterly stupid guidelines, which specify a protocol that does not work for many people and to listen to the loud, outraged voices of patients and advocates that are demanding that options be made available to us.

And finally, I want to entertain people – because I'm a funny, silly person as well and I’m not comfortable making a “woe is me” movie. I don't feel that way about my life, nor is that how I live. I feel very lucky: I feel lucky to be able to make this film and lucky to have the chutzpah to always deal with my health issues and to keep things moving, and that this is a part of life… not just for me but for many millions of people.

Mary Shomon: How can people see the film when's it's complete?

Maggie Hadleigh-West: My intention is that Sick to Death! will get traditional distribution for the film, which would include television and limited theatrical release, and then I hope to make it available on the Internet as a "pay-as-you-like" kind of film, because I don't want anybody to not have access to this information.

Truly, I hope to get it out there in as many possible ways as possible, including private screenings and whatever other opportunities arise.

Mary Shomon: What about the funding for the film?

Maggie Hadleigh-West: Well, I'm thrilled to say that Sick to Death! was funded in part by the Guggenheim Foundation, which allowed me to get through production – the shooting of the film footage.

We are doing a Kickstarter crowdfunding campaign in an effort to get the rest of the money we need for post-production, which is the costliest part of filmmaking and where the “magic” is created in the editing.

There are numerous people who are working on it with me, and we'll also be shooting more interviews as we go, so it's a very expensive and unbelievably time-consuming process, so we're hoping that the Kickstarter campaign will help us to reach our gap-funding goal of $50,000 and finish the film by the end of 2015.

You can learn more about Maggie Hadleigh-West’s film, Sick to Death! at the film’s website, www.sick2death.com.