Dear friends of Sage Abbey,
Every so often, I take some time to think about the owner of “the abbey” – me :). And when I do, one phrase keeps coming to mind – a lucky warrior. It is not a very glamorous term, but it is the one that adequately describes my life, including many things that have happened to me over the years. Of note are the following three events, when I felt I’ve earned the right to call myself the “lucky warrior”:
By age 2, I survived a serious childhood illness, when my pediatrician legitimately thought I was going to die. My family remembers the doctors not knowing what was wrong with me, treating me with antibiotics (when they weren’t supposed to), I kept running a really high fever, it was scary and that could have been it for me. But, it wasn’t – a lucky warrior, methinks!
At age 18, I went through a lot to leave my home in the Balkans due to the civil war and start my new life in America from scratch. That is a story for another day, but it features me as the lucky teenage warrior (possibly equally as exciting as any episode of the Teenage Mutant Ninja Turtles)! 🙂
At age 35, I had my thyroid removed due to suspicious thyroid nodules whose repeated fine needle aspiration (FNA) biopsies kept coming back “inconclusive”. Majority of FNAs come back benign, some come back malignant – mine was neither. Multiple experts couldn’t come to a conclusion, but they all agreed the gland should be removed.
Since the thyroidectomy, I have been battling an “invisible illness” as hypothyroidism is often called. However, if those nodules were not discovered, they could have turned into cancerous ones. So, after this third event, the term “lucky warrior” was here to stay, in my mind at least. And that is the topic of today’s story…
If you are one of 20 million people in the US who suffer from a thyroid condition or simply someone who sympathizes with 5% of the US population living with this condition, then read on. You may find some helpful information below.
Why is thyroid gland so important?
Thyroid, a butterfly-shaped gland at the base of your neck, through its hormone production is responsible for a slew of functions in your body – brain development during infancy and childhood, growth and development in adolescence, metabolism, body temperature, hair growth, skin health, cognitive function, mood regulation, bone health, etc. The gland produces multiple hormones out of which T4 (thyroxine) and T3 (triiodothyronine) are the main ones responsible for the aforementioned functions.
Every cell in your body depends on thyroid hormones for regulation of their metabolism. The normal thyroid gland produces both T4 and T3 hormones in 10:1 ratio. Although the thyroid gland secretes only a small amount of it, T3 possesses about four times the hormone “strength” of T4 and it is the most active form the body can use. Thus, T4 must be converted to T3 before the body can use it. Most of this conversion happens in the liver, but also takes place in cells of the heart, muscle, gut, and nerves. Hence, once your thyroid is removed, you are left without a vital organ and in order to live a semi-normal life, you have to take thyroid hormone replacement medications daily and for life. Furthermore, when your thyroid gland is gone, you simply may no longer be able to convert T4 into T3, so taking only one type of hormone replacement medication (like T4) may not work. So it was for me, and so began my journey through a variety of treatment options.
Thyroxine (T4) monotherapy (Synthroid/Levothyroxine)
Days after my total thyroidectomy surgery, I was put on a synthetic T4 hormone, called Synthroid or Levothyroxine (its generic version). My endocrinologist at the time, previously an electrical engineer, took an approach of treating my hypothyroidism solely based on my lab values (like every good engineer). Dr L, let’s call him, simply refused to take into account any of my other, persistent symptoms – heart palpitations, hair loss, weight gain, irregular periods, skin issues, body aches, brain fog, etc. He also did not believe that people without a thyroid gland may not be able to effectively convert T4 into T3. For two years he kept saying that my body knew how to handle the conversion and that all the rest of the stuff I was feeling was simply in my head. Had I continued to listen to him, by now I would either be dead or barely alive with a fistful of daily medications that would treat a variety of “unrelated” symptoms as he liked to refer to them. So I kept persisting, asking a lot of questions, and so Dr L, after A LOT of convincing, conceded and wrote me a prescription for triiodothyronine (T3) medication called Cytomel (now also available as Liothyronine, its generic version) to accompany my existing Synthroid.
Lesson learned #1 – Even if your doctor seems dismissive of your symptoms, don’t back off, keep asking questions. It is YOUR health and you are certainly worth it. The more logical you make the questions, the better. It is tough to argue with logic, and if you have medical research to support your inquiries, even better. A good source of information and a sure way to wonderfully geek out on medical research is the National Center for Biotechnology Information.
Thyroxine + Triiodothyronine therapy (T4 + T3 / Synthroid + Cytomel / Levothyroxine + Liothyronine)
The combo T4 + T3 treatment was a step in right direction, however, Dr L lowered my Synthroid dose after adding a minimal amount of Cytomel, citing the potency of T3 as 4 times greater than T4. That was the wrong move. Not only did the lower dose of Synthroid exacerbate my hypothyroid symptoms even more, but its fillers and dyes (see pg 15 here) made it difficult for my body to digest now substantially lower amount of the active T4 ingredient. The addition of T3 helped some, but definitely not enough for all the hypo symptoms to go away. Simply put, I was now grossly underdosed.
In an effort to make myself feel better, I started researching and reading everything I could find on thyroid issues. A lot of what is available in books and online covers hypothyroidism due to poorly functioning thyroid gland, thyroid-related autoimmune diseases, hyperthyroidism, but very little talks about hypothyroidism due to thyroidectomy. This is why I decided to share the details of my journey and experience here, hoping it would help someone else, thus making all the hours I spent on research even more worth it!
After trying the above two therapies unsuccessfully, I left Dr L and found a wonderful, caring doctor of internal medicine. Let’s call him Dr V. Dr V used the lab tests as guidance, but also looked beyond those results and always asked how I felt. I appreciated that very much.
Lesson learned #2 – If you are on levothyroxine therapy and sensitive to dyes (such as Yellow 5 / Tartrazine), Synthroid 50 mcg pill is the only strength that is dye-free. So, if you are taking 100 mcg of Synthroid per day, you may benefit from trying two 50 mcg pills versus one 100 mcg pill. Also, adding T3 to your treatment, does not also mean lowering your T4 dose. Your lab tests will help you determine the correct dosage, and it may take 4-6 weeks for your body to fully get used to any treatment adjustment.
Natural Desiccated Thyroid (NDT)
I discovered a natural desiccated thyroid (NDT) treatment option via the stopthethyroidmadness.com (STTM) website. I spent a lot of hours perusing the STTM website, learning a lot, but also questioning some information. The information I found useful were on the recommended labs to monitor thyroid hormone levels. For those who may not know, NDT is made out of desiccated porcine thyroid, so it is considered “natural” vs synthetic hormone therapy. The NDTs have been in use since the late 1800s, long before the synthetic hormones were created. The hormones in NDT are a combination of T4 and T3, which resembles a human thyroid. However, the difference between NDT (porcine) and human thyroid is in the T4:T3 ratio. While human thyroid produces approx. 10:1 T4:T3 ratio, NDTs have an approx. 4:1 T4:T3 ratio. This is where I got off the STTM choo-choo train and where my opinion diverged from the rest of the people following their advice.
Specifically, 1 grain (older measurement of weight) of NDT has 38 mcg of T4 and 9 mcg of T3. Healthy human thyroid produces approximately 100 mcg of T4 and 10 mcg of T3 daily. This ratio discrepancy kept me wondering how “natural” NDT therapy truly is … For me, it worked to a certain extent. It removed some of the hypothyroid symptoms (primarily body aches and fibromyalgia), while some remained even after achieving the illusive “optimal” state in terms of T4, T3, minerals, vitamins and cortisol (mainly weight fluctuations, heavy and frequent periods, hair and skin issues, heart palpitations, feeling winded after a flight of stairs). However, I felt like I was at least a step closer to finding the right therapy for me.
Over the years, I tried NDT medications such as NatureThroid by RLC Labs (NDT with fillers and lactose I could not tolerate, followed by its shortage), WP Thyroid (pure, lactose-free NDT medication that worked great until the shortage happened), and NP Thyroid (NDT that worked well, then the formulation changed). I know how it feels when the dose is right and when it is not. And I am just one of 20 million in the US, and 200 million in the world with this “invisible disease”. People who don’t know that we have it can’t tell, but the struggle is real. Majority affected are women.
Fortunately, and in the middle of all this, I finally found the way to keep my skin issues under control. After realizing the majority of beauty products out there contained harmful chemicals, including a variety of endocrine disruptors, I decided to use my skills and knowledge to develop and formulate my own product. I named it the Goodness Face Elixir. Since then, I and many others (with and without thyroid issues) use it daily to keep our skin balanced and clear. Most importantly, we never have to worry about endocrine disruptors in our products again!
Lesson learned #3 – If you are looking to mimic a human thyroid function, consider re-creating 10:1 T4:T3 ratio in your treatment and seeing how it works for you. That can be achieved with a T4 + T3 combo medication (such as Synthroid and Cytomel, or their generic versions), as well as T4 + NDT (such as Synthroid + Armour/NP/NatureThroid/etc) or T4 + NDT + T3 (adding extra Cytomel; this is my current combo and more details are included below).
Recurring NDT shortages made me look for alternative therapies – again!
I, like many, since 2017 have been wondering why all the NDT shortages and why have the NDT manufacturers been explaining them as “upgrade to manufacturing facilities to meet an increasing demand.” Then, I found these – a lawsuit and an FDA recall of two major porcine-based active pharmaceutical ingredient (API) manufacturers in China. Although none of the above NDT manufacturers would admit it, and most of them state that their suppliers are US or European-based, there is a very good chance that these two Chinese companies have something to do with these sudden shortages and formulation changes of NDT medications world-wide.
Another option is sourcing your NDT thyroid medication from Thailand, like Thyroid-S, although I contacted the manufacturer and they told me that the kind I would need (lactose free) has been discontinued. For those who care to know, their active pharmaceutical ingredient (porcine powder) is sourced from China. When I asked, they said China and also added “the same place where the rest of the world gets it.” This is when the rest of the NDT shortage stories started to make more sense and I decided not to go down that road.
Some suggested trying unregulated, bovine-based supplements like Thyro-Gold or Thyrovanz. However, I was left wondering about the T4:T3 hormone ratio in each pill, as well as their consistency and manufacturing practices. Since these are sold as supplements and not pharmaceuticals, the manufacturers don’t have to make any of those details public. I am also wondering if these will soon start to experience shortages due to an increased demand from folks who may be looking for an alternative to NDT.
Another treatment option I read about was T3-only medication. However, because this would definitely not resemble a normal human thyroid hormone production, I quickly decided that was not an option for me.
I then considered compounded medications. This type of therapy involves skilled compounding pharmacists and it is an art. For people who have sensitivities to medication fillers and dyes, and who do not tolerate the T4:T3 ratios in manufactured NDT, compounding allows for a customized dosage and customized hormone ratio of daily thyroid medication. It is costlier than other options, but for some, necessary to survive. As of recent, FDA is attempting to regulate access to and distribution of compounded medications, including desiccated thyroid. You can read about this here and thus, I decided not to go with this option either.
Lesson learned #4: Through research, I found out that a 150 mg capsule of Thyro-Gold contains 50 mcg of T4 and 12.5 mcg of T3. A 300 mg capsule of Thyro-Gold contains 100 mcg of T4 and 25 mcg of T3. This makes it a clear 4:1 ratio, and does not resemble a human thyroid hormone ratio of 10:1.
What therapy am I finally choosing to try?
My next step is to see how closely I can mimic a healthy thyroid T4/T3 hormone production (10:1 ratio, remember?). For that, I will try a combination of T4, NDT and, if needed, a small dose of T3 and see how I do. I researched and found the 2013 Cleveland Clinic formula to determine the starting dose of T4.
The formula is simple: convert your current weight in lbs to kg and multiply by 1.5 if you’ve had a full thyroidectomy, or 1.3 if you’ve had a partial thyroidectomy. This will give you your starting T4 dose. Because I still believe there is goodness is NDT therapy, I will supplement part of the T4 from a synthetic medication, and the other part from NDT. To these, I may add a minimal dose of T3 to achieve the normal, human T4:T3 ratio of 10:1.
As an example, here is the T4 calculation for a sample weight of 165 lbs:
165 lbs / 2.2 (approx. conversion value to kg) = 75 kg * 1.5 mcg/kg = 113 mcg of T4 (total T4 needed)
1 grain of NDT = 38 mcg of T4 + 9 mcg of T3 (hence the approximate 4:1 ratio)
113 mcg of T4 (total T4 needed) – 38 mcg of T4 (total T4 in 1 grain of NDT) = 75 mcg of T4 (this amount will come from synthetic T4)
Now, to this, we add an appropriate T3 dose in the 10:1 ratio that would closely resemble human thyroid hormone production.
Based on 113 mcg of T4, T3 would be at 11.3 mcg. Since 9 mcg will already come from 1 grain of NDT, I may add a minimal dose (2.5 to 5 mcg) of synthetic T3 and see how that works for me.
Alternatively, several other studies have sprung up regarding calculating the appropriate starting T4 dosage. One study from 2006 indicates 1.68 mcg per kg of body weight. Another one from 2011 uses regression equation to calculate the correct T4 dose: levothyroxine dose = bodyweight in kg – age + 125.
I chose to follow the equation mentioned in the most recent study I could find (2013). I will re-test after 4-6 weeks on this protocol and see how it works, then adjust from there, if needed.
Lesson learned #5: In my further research, I found another thyroid-related website, Tired Thyroid. This one made me happy because it advocated the same treatment approach of trying to resemble human thyroid hormone T4:T3 ratio of 10:1. Just a few days after starting the new protocol, my heart palpitations are gone, and I can do things without feeling winded. I feel like I am finally on the right path, and I sure wish you the same! Thanks for sticking with me thus far.
So there you have it…
Thanks to my hypothyroidism, I feel like a lucky warrior every day. I thank my lucky stars every day when I am able to spring up out of bed in the morning with a big smile, without feeling lethargic and tired, and when I am able to peacefully fall asleep at night without insomnia or body aches. And I sure like the math behind all these calculations 🙂
Perhaps this lengthy blog post will help someone get better. Perhaps together we will invent that new thyroid medication that will make all of this history. Maybe we will find a way to re-create a thyroid gland (stem cell therapy or 3D printing anyone?). If you have news on scientific breakthroughs, brilliant ideas or thoughtful comments you would like to share, feel free to post them below. If you would like to share these privately, email me at email@example.com. I would love to hear from you!