My Thyroid Story

My thyroid story is a little lengthy similar to my PCOS story however it's more frightening and one worth telling as an estimated 20 million Americans have some form of thyroid disease. And of that population, a whopping 60 percent are unaware of their condition.

In the United States alone, about 20 million Americans of people experience thyroid symptoms and have thyroid disease and of that 20 million 60% are unaware they have a thyroid condition. That's a significant amount of people probably experiencing thyroid symptoms and not knowing what's wrong or it could be the fact that they do know what's wrong yet they aren't being heard by their doctor, endocrinologist, etc.

That specific scenario is one that I not only found myself in but MANY people also find themselves in. It's a flaw in the medical field that doctors are starting to recognize, but not fast enough. If I had gotten the tests I repeatedly asked for, knowing what they wanted to test wasn't enough to get the answers and help I needed, I wouldn't have gone over half of what I've experienced over a year.

Keep in mind, my thyroid story is a personal one as all of my stories have been, however, it's one that made me face my mortality. That experience isn't one that isn't easy to share and moments where it can get TMI, but remember this is a website about Medical conditions without sugar-coating anything and it's not pretty by any means.

For many years I've always just thought that PCOS was my biggest problem Anytime a new symptom popped up, I thought that it was either PCOS-related or just something just I experienced. I don't remember what it's like to feel 100% "okay" - as in having 0 conditions...but it makes the days I do feel better than usual that much more wonderful and I think 'ah..this is what feeling normal must feel like"...but what's "normal?" As I get older, I realize no one ever truly experiences "normal" the way others do. It's just our perception of what "normal" is.

I've been with my boyfriend for 7 years now and going back to our third date being a breakfast brunch, I had poached eggs; runny and so delicious as part of my order of an Eggs Benedict. Within 10 minutes I was feeling really warm and starting to run a slight fever. At first, I thought it just might be the restaurant or more people in the place, or maybe I was catching something. I wasn't too sure what was happening, but my bf was. He told me without hesitation, "You have a Thyroid Condition". And I laughed nervously and said no, I have PCOS, but I think my thyroid is fine and he said "No. I'm telling you, you have a thyroid condition and you need to get it checked out." I said "ok, I'll do that when I can". Thing is, My bf has a loved one who also has a thyroid condition. Little did I know, my bf was watching me go through the same symptoms that he watched his loved one go through.

About a year and a half went by and I was noticing how sensitive to dairy I was becoming. I would have a Malt Shake from my favorite diner and would quickly need to use the bathroom, joint aches, fever. Almost felt like the flu. I incrementally started to feel more tired as time went on.

Eventually, I decided that it was time to get my thyroid checked out and met with a doctor. I told her how I was feeling and my symptoms and she said that the only two labs that would need to be tested to determine whether or not I had thyroid condition were my TSH and Free -T3 (Informational post on Thyroid Hormones here. This isn't a full thyroid panel. (More about a full panel here) I had requested to get a full blood panel and was told that it wasn't necessary. I then asked for a full panel and said that I was the one paying for it out of my own pockets and if I was going to get a test done, to include the full panel. Once more, she said no and that he was testing the necessary variables.

I reluctantly left her office, upset, and got the blood work done anyway. Within a few days I got my results back online and was surprised, not by my TSH and Free T3 values, but the note that came with it; a condescending "Your Thyroid is normal" added to it. Not being able to go to another doctor and using the majority of my cash on this test, (I was uninsured so the test, doctor's appointment, the copay were my responsibility.) I felt defeated. I told my boyfriend the results and he was also frustrated that they wouldn't listen to my request for the panel.

Time went on and about a little over a year later, one night I went to sleep and woke up with my heart rate incredibly elevated. It took me a little to process what was happening and I laid in bed thinking "is that my real racing?" My heart was beating around 120 BPM (beats per minute). I then started to get sweaty, chilled, shaking and rushed to the bathroom. I then started to vomit and before I knew it everything was coming out of both ends. At the time, I was doing Keto and had done Keto for 2 years (this was before it was trendy and people didn't know what keto was) and was loving it. I decided to go on Keto initially because I had plateaued when I lost 30 pounds and wanted to get rid of the last 10.

Knowing I was on Keto was important because I had experienced some low blood sugar and I checked my blood sugar with a meter I had (to keep tabs on my blood sugar to stay on top of it to avoid becoming pre-diabetic again). it was the lower side. My boyfriend woke up early and saw the condition I was in. I told him what was going on and he mixed some warm water and honey and I felt a little better, but still shaken up.

This would eventually go on a couple of times a week for months and we went on thinking it was low blood sugar. One day we decided to have a cheat day and went to Costco and bought some treats. People closest to me know I LOVE chocolate so I went for a box of chocolates and a few things I normally don't eat every day.

A little while after falling asleep I woke up again to my heart racing AGAIN. I thought to myself, this can't be. I had a cheat day not even 24 hours ago, so my blood sugar should be stable. While fasting (such as anyone while sleeping for 8 hours) anything less than 80 mg/dL is low and anything over 100 mg/dL is considered elevated, so the range is 80-100 mg/dL- although for my fasting blood sugar, my normal between 80mg/dL-90mg/dL. I typically don't like my fasting blood sugar to go past 90 because of my previous history of being diagnosed with Pre-Diabetes. I worked very hard to reverse it so I try to keep my fasting blood sugar below 90mg/dL.

I measured my blood sugar and it was a perfect 80 mg/dL. I got out of bed and thought HOW could this be possible? I had a major cheat day and my blood sugar was perfect. That's when I realized there was something wrong and the root of it wasn't my blood sugar. I got out of bed, went to the bathroom, and kept checking on my heart rate. My heart rate would go from 140, 158, 118, 97, 110, 130 and it would increase and decrease for about 30 minutes and my blood pressure would also dramatically increase or decrease. I eventually went to wake up my boyfriend. I told him "Babe, my heart. It's happening again." and he said he would make some hot honey water, and then I told him "This isn't my blood sugar. I just tested it and it's at a perfect 80." His eyes opened wide and filled with worry and asked if I wanted him to take me to the hospital. I told him no and that I would just wait it out at home.

That night, he put me on the couch, placed a blanket over me as I had chills, and turned our computer on. He at with me while we went through a lot of medical journals, articles, videos, etc, and my symptoms were consistent with a Thyroid Storm. It's when your thyroid is overactive with more Iodine than the body can handle so it does everything it can get rid of the iodine such as vomiting, or through waste, a fever to start sweating it out, and all of that happening at once, takes a toll on the body making it work very hard and increasing my heart rate.

Normally when patients are going through Thyroid Storms, when they get to the ER it is typical to administer 20mg of Propranolol which is a Beta Blocker. This helps decrease the heart rate but is also used for anxiety. Coincidentally I was taking Propranolol at the time for anxiety (more specifically sleep and to stop my mind from racing every night) so it was perfect. My bf got propranolol for me and I took it and within 10 minutes I was feeling much better.

A thyroid storm can also happen when you have a thyroid condition that has gone undiagnosed for so long and hasn't gotten the proper treatment promptly. I was feeling defeated, weak and sick. I barely had any energy. I was afraid to go to sleep because as food is processing and digesting at night, it made sense that my thyroid storms were happening at night. I decided to start a low iodine diet in the meantime while I tried to figure out my next move. This lowish Iodine diet helped. I didn't drink a lot of Dairy, no iodized salt, no dark red foods, dark green foods, and the saddest of them all, no seafood. (I LOVE seafood) etc.

I ended up getting in touch with a DR. who specializes in Brain health and also focuses on Thyroid conditions. I drove to his office and he asked me about my health history and was very thorough in everything he did. I was there for about a little over an hour and never felt rushed. I felt heard and was happy. He ordered a FULL PANEL to test everything - not just a full thyroid panel, but tested everything and more without me needing to beg for it.

I got my test done and within 3-4 days he called and told me to head over to his office so we can chat about my results. I sat down and he had a whiteboard behind him.

He honestly looked like this;

explaining my condition and what I was experiencing. Turns out My T3 levels are almost non-existent (hypothyroidism). My T4 levels were incredibly high (Hyperthyroidism.)

My PCOS causes high testosterone (If you haven't read information about PCOS, click here) and the best way it was described to me was that T4 is a raw chicken while T3 is cooked Chicken. The testosterone I'm producing isn't letting my body cook the chicken so there's no conversion of the Thyroid Hormones. The testosterone, the thyroid issues and severely limiting my carb intake (To do Keto right, you have to be between 12g - 20g of net carbs) were impacting my blood sugar level and decreasing it.

The nights I had my thyroid storms were the days I had foods high in iodine and when my thyroid utilized the iodine, it was too much and would send my thyroid into overdrive that would send my body into a frenzy (storm) to get rid of the excess iodine.

When he explained how everything was connected and how I wasn't imagining things I was so relieved to have answers that I wanted. The drive home was a process. At first, relief that I had answers then wonder about my next steps, and then I was angry. I was angry at the practitioner I had seen the year prior begging for a full panel that would prove I did have a thyroid condition. I was angry that because of her not doing her job, I know what a thyroid storm feels like and honestly feels like you're dying. Imagine working out, getting your heart rate up to 140 - imagine the beat of your heart. Now imagine that while lying down doing absolutely nothing. It's a horrible feeling. And with your blood pressure also being sporadic and blood sugar on the lowish side, you truly wonder if you're going to make it to the next day. I can't explain how many times I would lie awake at night, afraid to go to sleep because the thyroid storms happened so frequently while I was asleep and woke me up, that I unintentionally associated sleep with thyroid storms and I would only fall asleep until I could no longer stay awake.

Every day I woke up felt like a miracle and I was happy God chose to woke up me that morning. You would think with my luck with health conditions, I would be furious at God, but in all honesty, it's all made me cling to my faith in him even more. And when you're going through something like that, while you're processing what' happening, you're praying. You're praying that you make it.

Thyroid storms have a 70% mortality rate and each time one happens, the rate increases and sometimes they can even leave lasting damage/effect long term. The fact I serviced them at all and without going to the ER for the number of times I've had them, it's another reason why I cling to God more than ever before.

My goal has always been to take a holistic approach to things. With my PCOS it was been amazing and in my mind this would be no different. I shifted my meals that were more tailored to PCOS to accommodate my thyroid but learned to balance foods that were good for Hyperthyroid and Hypothyroid and shifting between the two. Food for one of the two conditions could be harmful to the other so it's important to really balance food and not go overboard. I heard Ashwagandha is a great supplement for Thyroid health and I thought, it couldn't hurt to try it. I remember the first day I took it and I felt better than I had in a long time. I was energetic, my brain fog diminished, my memory was great, my mood was also in a great state and I fell in love with it. I didn't know how I lived without it for so long. By week 3, however, I got another Thyroid Storm. It was discouraging that after almost a month of great results, it felt like I backpedaled to the beginning of all this and I was frustrated.

After trying hard with the holistic approach of using Ashwagandha, my thyroid was so far gone and out of control, I learned it was beyond just food and supplements. I am currently on a microdose (2.5 Micrograms) of T3 Thyroid hormones (liothyronine) and this has made a huge difference and shows just how sensitive my Thyroid is and I've been taking it since 2017. Being on medication at all for this wasn't something I wanted. I didn't want to take it, but with all that I had experienced, and what I tried before the medication being the last resort, it was something I had to take. I haven't had a thyroid storm since and I feel much better. Since then, I stopped taking Propranolol because it was another medication I just didn't want to be dependent on, and in its place, I take CBD capsules and tinctures, and cannabis dummies that are with both CBD and THC to sleep. I didn't realize that Propranolol was also making me feel like a shell of a person so getting rid of that was an increase in my quality of life. I still have my meals tailored for my PCOS and my thyroid conditions and drink my peppermint tea with honey every night.

At first, I used to be ashamed of my thyroid medication even though it's a microdose. I thought maybe I was taking the easy route, but I have learned pretty recently due to a new diagnosis (will share another time) it's not impossible to balance both a holistic approach with a little help with the western. A lot of it also has to do with just how extensive the condition went untreated. If I had caught it earlier, or if my doctor had fulfilled my request for a full lab panel, I might have been able to treat it 100% holistically, however, that's just speculation.

Hope this encourages anyone to stay on top of their Thyroid health. Keep in mind, Hyperthyroidism, Hypothyroidism isn't the only thyroid conditions. There's also graves disease, Hashimoto's Thyroiditis, and Thyroid cancer too. Thyroid Problems have a LONG list of symptoms (list here).

If you have a hunch that you might have a thyroid condition, please get it checked out as soon as you can. If you have a doctor that doesn't want to do a full panel, leave and find a new doctor who will. Be your advocate!

As always, stay healthy!

-N