On November 21st I discovered that I had put my Hashimoto’s Thyroid disease into remission. In an overwhelming wave of support, many people dealing with the sufferable condition had asked me how I did it. I wish it was possible to fit it all into one page, but in order to be transparent about the last few years of my life, I have decided to split this blog post up into 4 parts. It still will not cover all of the information I have to say, but my goal is that it provides a glimmer of hope for you to continue, or even begin, on your journey to optimal health.
Whether you have been dealing with Hashimoto’s disease for a fair amount of time, or are still waiting on a diagnosis, it is never too late to start healing. You deserve to live a life that brings you joy and security. Whether you are open-minded to healing or doubtful of it, know that you are in the driver’s seat of your own health, and the people, physicians and loved ones that you surround yourself with, are sitting in the passenger seat either cheering you on or misleading you completely.
How I Put My Hashimoto’s Disease into Remission: Part 1
What It Means To Be In "Remission" From Hashimoto's Disease
Remission, by definition, is the absence of disease activity for a prolonged period of time. In Hashimoto's disease, Thyroid Peroxidase antibodies measure the direct immune system attack on the thyroid gland. In current medical testing, anyone with TPO antibodies surpassing 35 will be diagnosed with Hashimoto's Thyroiditis. Less than 35 antibodies does not support a diagnosis as it is common to have some antibodies in the blood, even in healthy subjects. It is important to note that remission is not necessarily permanent. One stressful event, one viral infection, or one wrong food served at dinner can throw your immune system completely out of whack. Remission, for me, means living a healthy, balanced lifestyle that I have created through research, stubbornness and good habits. Remission IS possible for people dealing with Hashimoto's disease, even if you feel like the end is not in sight.
The Diagnosis
I was young, impressionable and rather miserable. I had stomach pains all the time, anti-acids were a close companion of mine during these years. I was about 80 pounds overweight, I was lazy and was often in a bad mood. I had confessed to my doctor that I felt my pains were not related to the food I was eating and she had sent me for blood work and an ultrasound of my gallbladder. Though I regret removing my gallbladder and felt it was a premature thing to do, I am glad I had spoken up and that my doctor at the time felt compelled to dig a little deeper. Had I not questioned her claim that it was fast food making me fat and tired all the time, I feel as though I would not be where I am today. At 14 years old, I became an advocate for my health and I fear that most women in these situations stay quiet.
After discovering Hashimoto’s, my Hypothyroidism diagnosis was named and I was put on a treatment plan that most of you are familiar with. I say “treatment” quite loosely. I had started taking Levothyroxine every night before bed, with a note from my endocrinologist at the time, “don’t drink milk with it and when you want to get pregnant come back and see me”. This was the information I was left with and when I look back on this I am reminded how irresponsible this was of my medical team. Though I was maybe too young, my parents should have been given more extensive information on the life-long disease I had been burdened with, but like most of us, we were left in the dark about this diagnosis and what it would soon mean for my life.
A Hashimoto’s diagnosis is tough to come by. The truth is, most people have Hashimoto’s for up to a decade prior to their diagnosis so it can seem almost impossible to diagnose in the early stages. It is the Hypothyroidism that is often diagnosed first, but by the time the thyroid is destroyed, Hashimoto’s has already gone too far. Hashimoto's Thyroiditis is categorized as an autoimmune disease with similar symptoms to other autoimmune conditions such as Rheumatoid Arthritis, Type 1 Diabetes and Graves Disease. According to the National Institute of Health, autoimmune disease is characterized by a disease process in which immune cells (antibodies) attack tissues that they are meant to protect (2012), in the case of Hashimoto’s Disease, these tissues would be the thyroid gland and surrounding tissues. The attack on this gland leads to the destruction, often beyond repair, of the thyroid which results in a condition known as, Hypothyroidism. Approximately, 60% of people with this autoimmune disease remain undiagnosed, or are currently dealing with a condition labelled as “subclinical hypothyroidism” with no treatment plan, waiting for it to fester up and get worse so that doctors can step in and “treat” them.
The best way for me to really describe the unfortunate reality of autoimmune disease, would simply be to quote the journal from the NIH (national institute of health).
More than 50 million Americans are currently living with autoimmune disease, and new cases are rising at an alarming rate. Autoimmunity is
the highest cause of morbidity in women in the united states and is one of the top 10 leading causes of death in women under the age of 65.
Autoimmune diseases are frequently chronic illnesses, and it is estimated that more than 100 billion health care dollars are spent each year
in the management of autoimmune patients, which places autoimmunity among the most costly diseases to diagnose and treat.
This is an epidemic. This is a crisis for doctors, for patients, for people who do not even know what an autoimmune disease is, for parents, for pharmaceutical companies and for the entire world, because no one is immune to becoming chronically ill. Waiting for a diagnosis, in my opinion, is the most dangerous thing you can do. You are putting yourself in the line of fire, and it is time for conventional medicine to start looking at a preventable approach because disease activation can be prevented. The good news is, Hashimoto’s disease activation can also be reversed.
“Treatment”
As previously mentioned, I use the term “treatment” quite loosely. Taking a pill is not treating a condition, it is temporarily dealing with the issue, sort of like a band-aid. I am not pill-bashing, because without thyroid medication it would be fatal, but Levothyroxine is not curing you. Do not let someone tell you that this pill will fix everything. It will not take away your symptoms, it will not repair thyroid tissue and it has nothing to do with the autoimmune disease itself. Levothyroxine is a synthetic T4 (thyroxine) hormone that is taken orally to replace the T4 that is not being produced by the destroyed or “sluggish” thyroid gland.
The problem with Levothyroxine as the only method of treatment used for Hypothyroid and Hashimoto patients is that it is only one of the essential thyroid hormones and it is completely inactive. Physicians are expecting patients to convert a small percentage of their T4 hormone into T3 but patients are already dealing with metabolic issues, liver damage, gut health issues and so much more. How can we expect thyroid patients to successfully convert this hormone, and never check to make sure it is being done? Without the delicate conversion of thyroid hormones, we are left feeling an array of symptoms that come with thyroid disease.
These Are the Symptoms I Had While On Levothyroxine Treatment
Extreme fatigue, each day felt like I was coming down with the flu.
Weight gain, I had gained nearly 25 pounds in under 2 months
Brain fog, running red lights, making wrong turns, dropping everything, tripping over my own feet and forgetting to go to work
Cold sensitivity, my fingers and nose were always frozen but the rest of my body was sweating
Night sweats, waking up every few hours due to over-perspiring.
Hair loss, balding spots at the back of head and at the tip of my hair line, thinning eyebrows and no hair growth for over 6 years.
Stomach aches, every time I ate I felt sick, bloated and tired.
Anxiety, did not want to be a part of any events with friends, concerts, dinners, etc. Everything made me nervous and uneasy.
Depressed, getting out of bed was a tough task, but staying out of bed was even harder. I cried every day.
It is important to note that these symptoms are not as a result of the drug but rather as a result of not being properly treated for my Hypothyroidism, however, your medication does play a large part in how you feel on a day to day basis. Levothyroxine is not the only medication for patients with Hypothyroidism. Some other options are synthetic T3, commonly known as Cytomel (brand). Some physicians will prescribe Cytomel in addition to Levothyroxine as a way to ~ sort of ~ mimic the endocrine process and to ensure patients are getting adequate T3 into their systems. I know several patients who are successful with this treatment or at least more successful than T4-only patients. There are natural forms of thyroid hormones, commonly Natural Desiccated Thyroid. These forms come from glandulars of animals, more commonly being porcine (pigs). This is a way to naturally mimic the exact process of the endocrine system, and from my own personal experience, this medication has been the most successful. Though the natural forms of thyroid hormones are not perfect, there are also many myths about this treatment in conventional research. That topic is for another day.
So why do doctors prescribe T4-only medications?
Well, here is some food for thought.
It is the easiest thyroid medication to dose. Physicians are taught by drug companies with research also conducted by drug companies. They learn in medical school to test TSH (thyroid stimulating hormone) which I will discuss further in a minute. The problem is that this test is not nearly enough information to detect what is really happening in the body and it is also incredibly outdated. The lab range for TSH is typically between 0.5 and 5. However, research shows that patients with a TSH higher than 2.5 are at a significantly higher risk of heart disease. Just because it is easy to dose and cheap to make does not make it the best option.
Research is typically conducted by drug companies, and though a popular study of 89 patients with hypothyroidism revealed that the T4-treated patients actually presented with worse symptoms than those who were left untreated, drug companies suggest otherwise. There are several studies that show the unfortunate outcomes of T4-treated patients, but most of them are hard to find, or must be paid for to access them. This is not to say that you will not be successful with T4-only treatment, but I can assure you, this pill is not a fix-all situation, and living symptom-free takes work far beyond medication. Remission will not just happen by taking a pill every day.
Synthroid (the most popular brand of Levothyroxine) is filled nearly 23 million times a year in the United States alone. Thyroid medication is a very rich industry. Doctors who prescribe this medication ignore the relevance of the T3 (active) thyroid hormone. This is why your lab results could come back looking “great” but you could be feeling anything but. Patients typically report feeling better once put on Levothyroxine, but after a while on this medication symptoms start to reveal themselves again, sometimes leaving the patient feeling worse than ever.
The sad part is, it is hard to find studies without bias. You must look at the source you are getting your information from. I always say, anyone can get the internet to agree with them. An article from the Synthroid brand, suggests that there is no evidence to prove that diet has any impact on thyroid health, however one of the most prestigious health institutes, The National Institute of Health, argues against this. They state in one journal, “It is apparent from the studies that the caloric content as well as the composition of diet, specifically the carbohydrate content, can be important factors in regulating the peripheral metabolism of thyroid hormones.” Another article from the NIH suggests remission of autoimmune disease is only possible through alternative treatments (which mainly focus on diet and lifestyle) and that conventional medicine has a lot to catch up on in this field of treatment. So, where do you get your information from, and more importantly, where does your doctor get their information from?
So, What Medication Do I Take?
I take Natural Desiccated Thyroid. This is a combination medication of both essential thyroid hormones, T4 (thyroxine) and T3 (Triiodothyronine). It is a medication that mimics the body’s natural endocrine process, and therefore in my opinion, and in many professional opinions, it happens to be a better suited medication for many. This is not to say it is the perfect medication. Unfortunately, there are issues with this treatment, like there is with any, and I always suggest doing your research and getting a second opinion before you commit to taking a pill for the rest of your life.
How Do I Know I Am Optimal On NDT?
Oh you will know. The first week of treatment I felt terrible. Thankfully I had no major commitments and it was during a time in my life where I mostly felt terrible every day anyways. I can vividly remember the panic I felt after 4 days of treatment. Thoughts such as, “Oh my god this is my life, this is how I will feel forever” crossed my mind several times. I doubled that dosage the following week (as advised by my naturopathic doctor) and that’s when I began to really feel the benefits of this medicine. With T3, there is a feedback loop, and the longer you go without increasing a dose, the worse you will feel. It took several doses and around 3 months to finally become optimal with this medicine. I have never looked back.
There is no perfect medication, but NDT has been a life saver for me, and my advice is to find a physician who is at least open to the possibilities of this medicine. Know that whichever treatment you are using, a pill is never going to fix the bulk of your issues, they are not magic. Putting your Hashimoto's into remission is a full-time job that requires dedication and commitment.
What is Optimal Lab Testing?
Everyone’s “optimal” will vary. The most common thyroid test used today is the Thyroid Stimulating hormone test, TSH. The TSH is a measure of pituitary function, and whether your pituitary gland is properly communicating to the thyroid whether it should produce more or less of the thyroid hormone, T4. This test does not measure thyroid function, nor does it reveal whether the body has metabolized the T4 hormone and converted a small but effective percentage into the essential active hormone, T3. The reality of the TSH test is that you can go your whole life with “normal” labs and never feel good or symptom free. You can have good TSH lab results, and have a wonky T4 and T3. This is why so many thyroid patients are still dealing with the sufferable symptoms. This test is important in addition to the rest of the thyroid panel, but on its own, it is effectively useless in many cases.
TSH over 3 - can indicate slight to severe Hypothyroidism
TSH under 0.5 - can indicate mild to severe hyperthyroidism (but not always, sometimes medications can suppress a TSH reading).
TSH between 0.5-2.5 - likely no thyroid dysfunction, but as previously mentioned, symptoms can still be rampant with a “normal” TSH. If a patient has symptoms of thyroid dysfunction with a "normal" TSH, looking deeper into thyroid hormone labs is essential.
T4 (Thyroxine) is an inactive thyroid hormone that is largely responsible for metabolic function, as well as mental and physical health. T4 also plays a significant role in prevention of illness and infection in the body. Free T4 is a blood test that measures the T4 circulating in the blood. Measuring the “free” levels reveal the unbound hormones and how they are acting in the body.
T4 that is too high - can indicate mild to severe Hyperthyroidism
T4 that is too low - can indicate mild to severe Hypothyroidism
T4 that is middle of the range is typically best for thyroid patients.
T3 (Triiodothyronine) is the active thyroid hormone that plays an even greater role in metabolic, cognitive and digestive functions. Though T3 circulates in significantly lesser amounts than T4, it is said to be an imperative hormone that functions on a more impactful level than T4. Free T3 is a blood test that measures the T3 circulating throughout the blood.
T3 that is too high - can indicate mild to severe Hyperthyroidism
T3 that is too low - can indicate hypothyroidism, and reveals that the body may not be converting T4 into T3 properly.
T3 that is closer to the top of the range - usually results in patients feeling better, but every case is individual
Reverse T3 is part of the thyroid panel that is rarely looked at but can be the answer to normal thyroid results in symptomatic patients. Too much RT3 can slow your metabolic processes and can lead to symptoms of overall low Free T3 levels. Instead of the body converting some T4 into T3 and RT3, it can convert it all into RT3, leaving you sluggish, fatigued and fat. You want your RT3/FT3 ratio to be less than 10:1 according to Dr. Amy Myers
Thyroid Antibodies! There are two tests to look at here, one is Thyroid Peroxidase (TPO) and the other is Thyroglobulin Antibodies (TGab). High levels of these tests indicate autoimmune disease. Most doctors will only measure these levels at the time of diagnosis, though integrative physicians will test these levels each time you are tested to keep track of the attack on the thyroid gland. It is integral to know what is going on in the body, and the more antibodies present in the blood, the more likely you are to develop other autoimmune conditions such as; RA, Lupus and multiple sclerosis.
My Thyroid Levels Before I Began Healing Thyroid Disease
TSH: 0.98 (considered normal)
T4: unknown
T3: unknown
TPO antibodies: 1990 (above 35 results in a Hashimoto’s Thyroiditis diagnosis)
At these numbers, I was told my symptoms were in my head and the result of being deeply depressed. When I asked my physician to test T3 he said it was not necessary.
My Thyroid Levels In Remission
TSH: 1.61 (range: 0.5-5 mIU/L)
FT4: 14 (range: 12-22 pmol/L)
FT3: 7.9 (range: 3.4-5.9 pmol/L) - (indicates I should consider lowering my medication dosage)
TPO antibodies: 32 (below 35 kiu/L is considered normal, a patient with labs under 35 is considered in remission)
RT3: 16.8 (range: 9.2-24.1 ng/dl)
I am hoping to lower my NDT dosage over time now that my Hashimoto's is in remission. This is not always a possibility and thyroid medication is typically taken as a life-long treatment. This is due to the fact that the thyroid gland has been so damaged in the past that the body requires thyroid hormone to be taken orally in replacement of what the thyroid is unable to produce.
Finding Your Team of Doctors
You are team captain, its 7th grade gym class and you get to pick the people on your team. Choose wisely. You don’t work for your doctors, they work for you. You are the customer in this exchange, they are here to help you. If they are not helping you, listening to you and valuing what you have to say, it is time to fire them and get them off your team. You will not heal when you surround yourselves with physicians who don’t care to see you succeed, physicians who rush you out of their offices, talk down to you, or ignore you when you are telling them how you are feeling. You may think you can do this all on your own but I am telling you from a great deal of experience, that you don’t want to. Hashimoto’s disease is lonely enough, you deserve an educated and passionate health care team standing behind you, rooting for your success.
I have a chiropractor that preaches holistic medicine, a naturopathic doctor who cheers me on and gives me the tools to heal, an MD who tests full thyroid panels, talks about diet with me and fully supports my choice to heal Hashimoto’s holistically. If I didn’t “doctor shop” and build my team, remission would not be here today. You need support from people who understand what is happening in your body and can provide you with the proper tools to heal.
It was extremely difficult to find a physician who was not only well trained in thyroid disease but who also had compassion and drive in his or her field of work. I went through a horrible experience with two MD’s, was written up as a non-compliant patient, was told to leave and never come back to an office, was called a know-it-all patient (as if that is an insult?), and was told Hashimoto’s would be life-long and that your antibodies will never disappear. I still look back in complete shock at that time in my life. Had I just kept quiet and did as I was told, where would I be right now? Part of me fantasizes about going back to that office and sliding a note under the door, but I know that it would not change a thing. He did not have a passion for healing, he had a passion for his pay check. As much as this was a horrible time in my life, I feel grateful for the lessons it taught me, and the lessons I can hopefully teach you.
Things To Look Out For When Looking For A Physician:
Does your doctor routinely check a full thyroid panel, at the least being TSH, FT4 and FT3?
Is your doctor open to other forms of treatments, or is Levothyroxine their only option for you?
Does your doctor ask you about your diet and your lifestyle, ie., stressors, environmental concerns and other herbs/treatments you may be using?
Does your doctor listen to you and offer solutions that are not only prescription-based?
When I finally found my new MD, one of the first things she told me was that there is no such thing as a one-size-fits-all treatment for anyone, and that if NDT was working for me, she supported my decision to take this medication. She asked me about my diet, and daily routines and touched on the importance of testing free T3. It has been a wild ride trying to find a caring physician, but it has all been worth it.
If You Can End Today Learning One Thing About Healing, Let It Be This.
Know that you are not alone in the fight to find proper care. It does not matter whether you reside in Canada, the US, UK or elsewhere, the lack of quality health care is astounding world-wide. On average, it takes about 5 doctors until you find someone who will help you and who has the proper training in the field of thyroid disease. You have a responsibility to know your condition and to understand how it impacts your body on an individual level. Know that you have a voice that is meant to be heard. You know your body more than anyone else on the planet, so speak up for it.
Thank you for reading Part 1 of my Hashimoto’s remission blog series, Part 2 will focus on what I did to kick-start my healing specifically focusing on diet and lifestyle changes. If you made it this far, thank you for being a part of my journey! As the concept of the butterfly effect suggests, everything that has happened in your life has led you to this moment.
Thank you,
Victoria
Diagnosed with Hashimoto’s Disease and Hypothyroidism, Victoria explores the reality of living with chronic illness through her blog, The Butterfly Effect.
Victoria seeks to spread awareness of autoimmunity and writes to inspire chronically ill patients to live wholesome lives beyond their health struggles.