Interview with Thyroid Patient Advocate, Mary Shomon

If you have a thyroid-related illness, you are likely familiar with Mary Shomon. Mary is not only a best-selling author, but also a patient advocate offering counseling, free webinar programs, and more. 

Dr. Jessica Nouhavandi sat down with Mary to discuss her career, thyroid medications, and other questions most pressing to those who are dealing with thyroid illness.

  1. When were you diagnosed with Hashimoto’s hypothyroidism? 

Back in 1995, I was working in communications and engaged to be married. Every time I went to my dress fittings, they had to take the dress out. I’d never had an issue with my weight before, so I went to the doctor and had my thyroid checked. I had a very fast diagnosis, which frankly, is not very common. 

  1. What made you decide to become an advocate for other patients? What was the gap you were seeking to fill for the public?

My diagnosis was the start of an odyssey for me because I didn’t lose the weight or gain back energy once I started hypothyroidism medication. And in chat groups online I could see that I wasn’t the only one not feeling better. 

So, in the early days of the Internet, I quickly learned HTML and started my own webpage so I could share the information I was researching and collecting. I had a great deal of traffic because I was one of the few people out there and there was a lot of interest. There was no patient organization at the time really serving that function; I became the unofficial spokesperson for the patient community and really tried to get the patient perspective out there.

I did not spend my childhood dreaming of being a thyroid patient advocate. But as a patient I was so frustrated that I didn’t feel well and no one knew why. The goal of my work is to fast-forward patients up the learning curve so that they don’t spend years in the dark and instead, quickly get to the good part: feeling better.

  1. What would you say your overall philosophy is around treatment? 

My mission has always been making sure patients know: you have choices. You have power. You don’t have to just follow what the doctor says. Be an empowered patient and do your own research. The best drug for you is the one that works the best–and safely–for you. That can take a lot of time and information to figure out. 

  1. For those who are less familiar with hypothyroidism, what medications might you take?

There are three categories of pharmaceuticals:

  1. Levothyroxine: This is a synthetic form of a thyroid hormone called T4. Common brands include Synthroid, Levoxyl, and Unithroid. There are also Tirosint gel caps and liquid.
  1. Liothyronine: This is a synthetic form of a thyroid hormone called T3. A common brand name is Cytomel. Some patients do better with T3 added to T4. 
  1. Natural desiccated thyroid: This is a thyroid hormone pill made from animal thyroid glands that naturally contains both T3 and T4. Common brands include Armour Thyroid, Nature-Throid, NP Thyroid, and WP Thyroid.

To break it down further, T4 is a prohormone that has to turn into T3 for your body to use it. The analogy I give is that T4 is like the cake mix and T3 is the cake. You need to convert the mix (the T4) into cake (the T3) in order to use it. The conventional medical world assumes this conversion process happens perfectly. But the holistic, natural health world recognizes that’s not always the case due to various other health problems. 

Patients who don’t feel well on levothyroxine in some cases end up feeling better on a natural desiccated thyroid drug. One thing that is interesting about this option is that it’s been on the market in some form for more than a 100 years. Natural desiccated thyroid is legal to prescribe and FDA-regulated, but it never went through the official FDA approval process because it was grandfathered in. 

  1. In thyroid medication, we know that consistency is really important. Can you explain why?

There are three separate issues at play: 

  1. Narrow therapeutic index: This means that thyroid patients will notice even small differences in a drug–a difference so small it would likely go undetected in another medication for a different condition state. As a result, consistency is key for people taking thyroid medication. Once a thyroid patient finds a specific medication and brand that works for them, they should stick to it. 
  1. Preexisting gastrointestinal issues: If you have another condition–such as a gluten intolerance, reflux, celiac disease, or an autoimmune issue–you may have difficulty absorbing the medication. 
  1. Allergic reactions or sensitivity to fillers (excipients): Fillers are the inactive ingredients in a drug; more than half of a tablet pill is made up of inactive ingredients. Examples of fillers include lactose, gluten, artificial sweeteners, various dyes, and coatings. 

The impact of fillers, binders, dyes, and coatings is not well understood. But enough patients have reported various side effects from these ingredients that we know they can get in the way of some patient outcomes. I’ve coached patients who developed issues including migraines, rashes, and congestion as a result of ingredients in their levothyroxine, symptoms that went away as soon as they switched to brands that didn’t include these excipients. 

  1. Can you speak to some of the changes that have impacted these medications and perhaps their success over the years? 

There have been a lot of adjustments that patients don’t hear about in the natural desiccated thyroid category. Because there is such a narrow therapeutic index for these medications, periodic reformulations and changes in excipients have wreaked havoc on some of the patients taking these medications. 

We’ve also had periodic shortages, due to raw material sourcing, and in some cases, FDA recalls. The FDA is notably not particularly supportive of natural thyroid medications, even though they have been safely used for more than a century. 

  1. Do you have a preference? 

As I said, everyone needs to go through their own trial-and-error process to find the best medication for them. I do well with the WP Thyroid because it has the least amount of fillers, and the fillers it does have are more natural than in other natural desiccated thyroid tablets. 

  1.  Can you share the demographics around who is most impacted by thyroid illnesses? 

Thyroid issues are around 8 times more common in women than men. Women are most commonly diagnosed after age 50, with the risk increasing each decade. There are also periods of hormonal flux when thyroid disease is more prevalent such as puberty, pregnancy, postpartum, and perimenopause. 

With men, diagnosis is more common after the age of 60 and there is a slightly higher rate of thyroid cancer. 

  1. Anything that makes you predisposed? 
  1. Being female 
  2. Autoimmune diseases–autoimmunity tends to be a genetic trait from families
  3. Smoking cigarettes 
  4. Exposure to radiation 
  5. Overconsumption of soy foods
  6. Excessive exposure to fluoride
  7. Iodine deficiency or excess

12. What is the most common question you field from patients struggling with Hashimoto? 

They want to know if they can cure it. Although endocrinologists say there is no way to cure, you can get into remission with the right treatment plan and approach. 

13. Can you share with patients any lifestyle suggestions to feel better, including in regards to diet?

You have to get into the optimal range for the thyroid in order to see a difference with your weight. You also want to see whether or not there are related issues with blood sugar. 

People tend to find they do better with whole food-based, lower-carbohydrate and lower-sugar diets. Some patients also find intermittent fasting or timed eating helpful. In my opinion, the idea of many mini-meals — known as “grazing” — throughout the day, is the absolute opposite of what thyroid patients should be doing to lose weight. 

But at the root of it, you have to first get the thyroid problem diagnosed and treated properly. Otherwise, you’re not leveling the playing field.

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Jessica Nouhavandi