young woman with red boxing glove with text overlay - Healing Hashimoto's Thyroiditis: [Part 2] Why I Became My Own Advocate for My Hashimoto's Treatment

Why I Became My Own Advocate for My Hashimoto’s Disease Treatment

Anna Hashimoto's Disease, Living Well with Autoimmune Disease 2 Comments

This is Part 2 of my Healing Hashimoto’s series which outlines my personal experience with Hashimoto’s Thyroiditis Disease.  The other posts in this series include:

Part 1 – 26 Symptoms That Led to My Diagnosis

Part 3 – My Hashimoto’s Disease Treatment: 24 Interventions I’ve Tried So Far

Part 4 – 10 Steps I’d Take if I Was Diagnosed Today

Part 5 – How I Reduced My Thyroid Antibodies from Over 2000 to (Almost) Zero

Part 6 – How I Keep My Thyroid Antibodies Low: My Current Management Plan

Disclaimer: I am not a doctor and this is not medical advice.  The information in this post cannot be used to treat or diagnose any disease.


young woman with boxing glove with text overlay - Healing Hashimoto's Thyroiditis: Why I Became My Own Advocate for My Hashimoto's TreatmentI wish I could say that I walked right into a doctor’s office, received my diagnosis, and was on my way to a resolution of symptoms within a matter of weeks, but that’s hardly how it went…

Ironically, I was handed (literally) the first hint that I could have thyroid disease.

During Sophomore year of college, I participated in a research project that involved the synthesis of thyroid hormone receptors.  My professor provided the class with an educational handout explaining thyroid function and dysfunction.

Knowing that my professor had a pretty good idea of how terrible I was feeling, I asked him immediately after class…

“Do you think I have a problem with my thyroid?”

It didn’t take long to find out that I have an extensive family history of thyroid disease on both my mom and dad’s side of the family including hypothyroidism, Hashimoto’s disease, and thyroid cancer.

While there was no other evidence (yet) of thyroid dysfunction within my siblings or parents, the history extended as far as two generations including grandparents, great aunts, aunts, and first cousins.

Knowing what I know now, this was the first marker for placing me on what some refer to as the “Autoimmune Spectrum.”  While inherited genes certainly don’t guarantee that one will develop thyroid disease, it does increase the likelihood of developing it, especially if the right environmental factors are present.

Related: Why We Choose to Prevent Autoimmune Disease in Our Children

So what did I do?

I called my primary care D.O. and set up an appointment.

After ruling out pregnancy and depression (multiple times), she agreed to test my thyroid hormone levels along with a basic blood panel work-up.  I wasn’t aware of the many different types of thyroid blood tests, so I just trusted that something would show up.

Well, I was wrong.

Nothing showed up.  My thyroid hormone levels and TSH were completely within the normal range.  Everything else came back normal.  I was devastated.

But then my doctor called and said she wanted me to do one more test… thyroid autoimmune antibodies.  Within a week, I received a phone call – “Anna, I think you have an autoimmune disease called Hashimoto’s Disease.  I am going to get you started on thyroid medication right away.”

To say I was excited is an understatement.  I looked at my test results and saw the following (I am unsure of the units used to measure as they were not listed on the lab results, but the reference range was provided):

My Lab Results

TSH – 0.49 (normal range 0.47-4.5)

Free T4 – 1.65 (normal range 0.64-2.26)

Total T3 – 101 (normal range 65-170)

Thyroglobulin Antibodies11.3 (normal range <0.9)

Thyroid Peroxidase Antibodies2.54 (normal range <0.9)

I was prescribed a small dose of generic Levothyroxine of 25 mcg and eagerly waited for my symptoms to melt away and my energy to return… but that didn’t happen.

At my next appointment about a month later, my doctor agreed to increase my dose to 50 mcg.  After a week or two, I definitely felt different, but not necessarily better.

My heart started to palpitate more frequently, my anxiety went through the roof causing multiple embarrassing breakdowns in front of strangers.  I couldn’t sleep at all.  And I always felt like I had an obnoxious amount of coffee… but I was absolutely exhausted.

At this point, my hope of feeling better had faded.

I met with my doctor again and told her about my anxiety as I broke down in tears.  “Maybe we can try Synthroid® instead of the generic brand and we will increase your dose to 75 mcg,” she said.  “Also, I am going to send you to see an endocrinologist.”

While waiting to see the endocrinologist, I felt so awful that I decided to see if there was an alternative medication to Synthroid.

I Googled “Synthroid and Hashimoto’s disease.” One of the first results to pop up was Synthroid User Reviews from drugs.com.  All of the reviews helped me realize that I wasn’t the only one feeling this way.

Encouraged by this, I dug deeper.  Somehow, after searching the depths of Google results, I found myself on what seemed like secret thyroid forums where people were trying to get this medication called “Armour®” on the black market because their doctors wouldn’t prescribe it.

Then I found the website Stop the Thyroid Madness (it looked A LOT different than it does now), and I saw images of pigs (so confused), and more talk of this “Armour” substance.

So, I Googled it, and thank you, Dr. Google – I finally found a new hope… there were so many people whose lives were changed after switching from Synthroid to Armour!

THIS IS WHAT I NEEDED!!!

But there were some major red flags.  It seemed that many doctors didn’t prescribe Armour.

I found templates that patients could use to write letters to their doctors, asking (begging) to let them try Armour.  There were lists of doctors that had a history of prescribing Armour and even fake online pharmacies marketing it.  What was so wrong with it?

There are a lot of different theories out there as to why this is… maybe its driven by the pharmaceutical companies, or perhaps its generations of the same training passed down to the newest generation of doctors, or maybe just even misunderstanding of how the thyroid works.  Regardless, I ran into a very poor reason given by my primary care doctor while pursuing my Armour dreams:

Doctor: “That’s an older medication… we don’t prescribe that anymore…”

What kind of reason is that?!

Meanwhile, I scoured the internet for one of those doctors on the super secret lists that had a history of prescribing Armour, hoping to find one near me.

I eventually found a “holistic” doctor that worked in a hospital nearby.  He agreed to see me and prescribed Armour without hesitation, but still recommended I see the endocrinologist.

Within 2 days of taking Armour, I felt an immediate difference in my energy and overall health.  I eagerly awaited my appointment with the endocrinologist to explain just how well Armour seemed to be working for me.

Surely, he’d be excited!

Unfortunately, he fell into that category of despising anything but Synthroid to treat thyroid disease IF he thought you had thyroid disease in the first place.  I should note that by the time I saw him, I had already tried Synthroid for about 10 months and Armour for about 2 months.

My appointment with him went a little like this:

Me: (After telling him my list of symptoms) I actually feel pretty good now that I am on Armour.  A lot of my symptoms have gone away and I finally have a little bit more energy.

Endocrinologist: Well, despite your raised antibody levels, I don’t think you have Hashimoto’s disease.  Your other thyroid blood tests are normal.  I think we should take you off all medication until your thyroid hormone levels start to go out of range – then we can talk about putting you back on Synthroid.

Me: But I am feeling A LOT better on Armour…

Endocrinologist:  It’s the placebo effect.  I will continue to treat you as a patient only if you agree to stop medication for now and will be open to using Synthroid in the future when you develop hypothyroidism.

So there it was… not only did he not offer ANY compassion towards my symptoms, he completely ignored what was working for me.  He then proceeded to tell me that I will most likely develop hypothyroidism, but we were just going to wait until it happened before we actually did anything about it.

This appointment made me realize two things:

Doctors are a great resource – I wouldn’t have received my diagnosis if it wasn’t for my primary care doctor.

But, they are also just people, like you and me.  And they have medical opinions, personalities, and other qualities that I may not click with.

This realization was crucial for the development of a completely new mindset that I so desperately needed.

If I wanted to feel better, I could no longer depend on the doctors to do all the work.

So, I ended my appointment with my endocrinologist rather quickly and instead of crying on my way out the door, feeling hopeless yet again, I held my head up high and told myself that things were going to be different.  There had to be another way and I was going to find it.

And guess what?  Here I am many years later, still riding that so-called placebo effect (oh, and almost in complete remission).

Interested in what I did next?  Be sure to read the next post in this series – Part 3 – 24 Interventions on My Path to Remission: What Worked, What Didn’t

If you have Hashimoto’s or thyroid disease, what was your experience with the initial treatment your doctor gave you?
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young woman with boxing glove with text overlay - Healing Hashimoto's Thyroiditis: Why I Became My Own Advocate for My Hashimoto's Treatment

Comments 2

  1. Your story is the same as mine! I was so sick after two years of taking levothyroxine that I felt I could no longer get through the day without a nap. I would drive home from work thinking about how good it would feel to be home and put my feet up. The anxiety, the palpitations, the brain fog, the exhaustion. My doctor diagnosed me with some type of autoimmune disease but she couldn’t figure out which one!

    I was too tired to do anything, let alone read about cures when I got home from work. Then on a day off, before I had a chance to get too tired, I looked up thyroid dysfunctions to see what other people were doing. Armour came up and I scheduled an appointment and, begged my doctor to prescribe it for me to try. Almost immediately I had my life back. That was about six years ago. But like you, I still had other issues; skin, hair, SIBO. I decided on my own try gluten and dairy free for 30 days. That lasted over a year, and I felt great. Without trying, I lost weight, had even more energy, and things looked good. Unfortunately, I didn’t trust my instincts, and slowly the occasional baked good or cream in my coffee started happening more often. While I still feel good overall, I could be better. My hair is thinning again and my middle is thicker.

    Reading your series tonight inspired me to go back to the dairy and gluten free life. Starting NOW! Thank you for that. Also, if you’ve never heard of Suzy Cohen, you may want to google her. She is a wealth of information on thyroid issues and I know that because of her, I am so much better today than I was six or seven years ago.

    I wish you continued health and wellness.

    1. Post
      Author

      Michelle, hooray!!! It’s funny how quickly old dietary habits can make their way back into our lives when we start feeling good. I’m happy you are starting to see the signs that you may need to return back to the gluten and dairy-free way of life because those are the simple changes that really work! Thanks for reading and taking the time to share your story, Michelle.

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