Thyroid Awareness Month ~ Hashimoto's Disease
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January is thyroid awareness month and I thought I’d say a little bit about it to draw attention to this small gland can cause so much confusion and reek havoc in our health, myself included. I am not a doctor, not a medical expert, and certainly not a thyroid expert. I have however, endured the byproduct of a thyroid auto-immune disease soooooo, here’s what I can share and RAISE AWARENESS. If it wasn’t for a friend of mine who had gone through what I was going through the year(s) before me then I would likely still be lost and feeling terrible.
The thyroid gland is an H-shaped organ composed of two lobes joined by a narrow isthmus located just below the laryngeal cartilages. The normal thyroid weighs approximately 15 to 25 g (less than 1 ounce), with each lobe 4 to 6 cm in length (up to 2.4 inches) and 1.3 to 1.8 cm (0.7 inches) in thickness.
The function of the thyroid gland is to take iodine, found in many foods, and convert it into thyroid hormones: thyroxine (T4) and triiodothyronine (T3). Thyroid cells are the only cells in the body which can absorb iodine. These cells combine iodine and the amino acid tyrosine to make T3 and T4. T3 and T4 are then released into the blood stream and are transported throughout the body where they control metabolism (conversion of oxygen and calories to energy).
This sounds all fine and dandy until other factors come into play and this is where I will summarize what I have learned and WHY it’s important…
Most doctors are not well versed in the thyroid function and will assess your thyroid health/function by the TSH bloodwork. HOWEVER, TSH is actually a by-product of your pituitary gland and there NOT an accurate measure of your thyroid.
Your body can have ALLLLLL the T4 levels imaginable, however your body cannot always convert T4 to T3 and therefore you may still feel terrible even if your T4 is measured to be “within range” and even if you are prescribed Synthroid (levothyroxine)
Bloodwork ranges that determine if you are “within range” are a sample of the last 1000 or so (give or take) patients who had bloodwork done. So what is “normal” and “within range” for an average sample of people DOES NOT mean that the “normal” and “within range” levels are actually accurate for what your body needs.
There are other things that your doctor should test when testing your thyroid bloodwork: free T3, T3 uptake, total T3 levels, and BOTH types of antibodies (Thyroid peroxidase antibody (TPO) AND Thyroglobulin antibody (TGAb)). I can’t pretend to understand them all even though I’ve done plenty of research through the years.
TPO is the most common type of antibody found in thyroid auto-immune diseases. I have the TGAb antibody which is the less common antibody found so do NOT let your doctor dismiss testing for BOTH of these antibodies.
Synthroid (levothyroxine) is the most commonly prescribed thyroid medication but it is ONLY T4 and thus will not be 100% effective for each person who takes it. If your body cannot convert T4 to T3 then you’ll still feel terrible.
Desiccated thyroid is the more natural version of thyroid medication and provides both T3 AND T4 (Armour is a common form, but there are others. I take Armour Thyroid.) It may or may not be better for your body to have T3 and T4, for me it made a world of a difference.
You can have too much thyroid hormone production (hyperthyroidism) and too little thyroid hormone production (hypothyroidism). You can also have perfect thyroid production but have thyroid antibodies (like myself) and then have ALL of the symptoms of hypothyroidism because the antibodies are killing off your thyroid or the thyroid hormones produced.
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My Story and Why This is Important to Me:
I will make this story as short as possible…
In April 2017 I started to feel different. I started to gain weight and lose energy rapidly. Within less than a month’s time I was up almost 10 lbs and having serious fatigue. I had been working out at 4am four to five times a week, running 3-6 miles on average plus HIIT training or weights while eating Whole 30 and Paleo. The decline in energy and in recovery was rather rapid and I knew something wasn’t right.
A friend urged me to get my full thyroid panel tested despite a doctor telling me he thought it was PCOS. I gave him the full panel I requested to be tested and trusted that he ran the full panel. He didn’t. I naively didn’t notice this until almost 2 years later.
In the summer of 2017 I was miserable with no answers as to why and I tried a holistic approach with thryoid supplements and progesterone. It didn’t help and I continued to feel like a fraction of who I used to be. My work outs were awful and I was tired and depressed. I was up TWO clothing sizes so as you can imagine I also emotionally felt awful.
Late December 2017 I tried a new female endocrinologist who is renown in our area and who works both with traditional and holistic approaches. From all she could tell me was that I was aging and needed to push myself harder to work out. Running 3 miles three times a week with a 6 mile run on the weekend wasn’t enough to lose weight as I age; I needed to run 8 to 9 miles on the weekend. WHAT? That is not normal for the average person much less someone who worked out all the time. She essentially said, “It’s all in your head, you’re healthy, exercise more.” More missed full thyroid panel testing.
In June 2018 I knew I needed serious help. I was miserable physically and emotionally and knew without a doubt something was NOT right with me. That was not how I had ever felt in my life. I went to my husband’s doctor who he had all the confidence in the world would figure it out. That doctor didn’t figure anything out. He did NOT run the full thyroid panel. He said I was completely normal when he read off my bloodwork, as I cried to him - sobbing that I felt awful and something wasn’t right.
At this point I was struggling to get out of bed. Struggling to even walk on the treadmill. I was SO inexplicably tired ALL the time. I had major anxiety and would cancel anything social that I could because I felt like I couldn’t manage to get out of the house.
November 2018 I had to argue with a gynecologist when I asked her to run my full thyroid panel. She said they didn’t care about anything other than the TSH level and the other numbers wouldn’t be looked at. I said I want to compare it all to previous results and I do not care about the out of pocket costs from insurance. She gaffed at me but by the grace of God ran the actual full thyroid panel. My test came back positive for Thyroglobulin antibody (TGAb). I have Hashimoto’s Disease (Autoimmune Thyroiditis). She called to tell me something is wrong and I need to follow up with my PCP or endocrinologist.
I’M NOT CRAZY - SOMETHING IS WRONG WITH ME
This was the turning point. I went back to all of my blood work and only then realized that every single time I had asked for the full thyroid panel NOT ONE of the doctors had actually ran it. NOT ONE. It took almost 2 full years to discover why I felt so awful.
January 2019 I went back to the female endocrinologist I had seen in December 2017 with my test results, hoping she would have answers and help me with thyroid medication as the traditional doctor will not treat you if your thyroid function is “healthy” despite having antibodies. I was literally told I would have to “suffer and feel worse and worse until the antibodies killed off my thyroid” - then and only then could I get on thyroid medication. She said I needed to avoid gluten (had been already for 2 years) and try not to get pregnant because Hashimoto’s can cause miscarriage.
Makes sense right? You can’t treat a thyroid that is producing. Sure. I get it. But, what about how awful I feel because my antibodies are killing that off? Nope. Sorry. You’ll have to suffer.
In February 2019 I went to the Houston Endocrine Center and stated my case (also sobbed enough) to convince the doctor there to allow me to take the TRH stimulation test (out of pocket expense). This test proved my thyroid function was abnormal so this endocrinologist started me on the smallest dosage of Synthroid (levothyroxine) which I was SO grateful for her giving me the chance to try to feel better. Only, I felt worse. She increased the dosage a small amount more - and I felt 1% better. ONE PERCENT. I’d take it.
May 2019 I went to the Hotze Health & Wellness Center and PRAISE GOD found a team of specialist that would listen and treat the patient based on how we feel not just based on lab work. They understand that lab work is a tiny snapshot in time and based on a range from a sample of recent bloodwork at that one lab. Their program is very expensive, but I cannot be more grateful for what has changed since they’ve allowed me to try different treatments. I read Hotze’s books: Hormone’s Health and Happiness and Hypothyroidism: Health and Happiness I finally felt understood. All of the answers I had needed were in these books and addressed in my appointments and I cannot believe it took from April 2017 to May 2019 to find a doctor who knew how to treat someone with my condition and who knew what to look for. They’ve switched me to Armour Thyroid and it took increasing it multiple times but I finally feel better and back to about 85% of who I once was with my energy levels and I’ll take it with enthusiasm as I work to improve.
It makes me crazy inside when now read stories of other people with auto-immune diseases who also go down these long trialing years of tests with no answers and doctors who do not know what to look for. Auto-immune diseases are notoriously difficult to diagnose but they’re becoming more and more rampant with all of the chemicals we use and chemicals/processed foods we eat.
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So what can you do if you feel like something is wrong with you?
DO NOT GIVE UP.
TRY NEW DOCTORS IF YOURS ISN’T LISTENING TO YOU
TRY NEW TREATMENTS AND NEW METHODS UNTIL YOU FEEL PROGRESS.
RESEARCH AND PRESENT INFORMATION IN YOUR APPOINTMENTS, YOU HAVE TO BE YOUR OWN ADVOCATE.
GET IN SUPPORT NETWORK GROUPS AND SEE WHAT OTHERS HAVE DONE, STEPS TAKING, DOCTOR’S SEEN
ASK FOR THE FULL THRYOID TEST PANEL (SEE BELOW)
TSH (Thyroid Stimulating Hormone)
Free T3
Free T4
Reverse T3
Total t3
Total T4
Thyroid peroxidase antibodies (TPO Antibodies)
Thyroglobulin Antibodies (TG Antibodies)
Books I’ve read about it:
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I hope this is helpful, though I know it is long. I share it in hopes you read it thoroughly so that if you recognize the symptoms in yourself or in someone close to you then you can help them figure it out. If it hadn’t of been for my friend, Meagan, constantly urging me not to give up and sending me information with such certainty that I had something wrong with my thyroid, I may not have found answers even yet.
What I discussed is my journey and it will not apply to everyone. There are many other thyroid conditions to be looked into with more detail such as thyroid cancer, Graves disease, and others. I have discussed my journey to discovering I have Hashimoto’s Disease - also known as Autoimmune Thyroiditis.
Again, I am not a medical doctor, not a medical expert, nor a thyroid expert so please consult with your specialists any questions or concerns you have about your health.
By raising awareness we help each other learn, grow, and HEAL.
XOXO
