Thyroid Disease Has a Face and It Is Someone You Know

There is a face of Hashimoto’s and Hypothyroidism. That face is your neighbor. That face is your co worker. That face is your boss. That face is the person checking you out at the store. 

It is estimated that 12% of Americans have or will have a thyroid problem in their lifetime. Around 20 million Americans have either hypo or hyperthyroidism, Hashimoto’s or Graves disease. It is estimated that 60% of those people don’t even know they have it but I bet they probably feel like crap. 

Women are more likely to have a thyroid condition compared to men. 

There are something like 300 different symptoms of thyroid disease. 

There are receptors in every cell of your body for thyroid hormones. The thyroid runs your metabolism. It is the breaks in your car. When you need to slow down, your thyroid puts the breaks on everything. And then you start to feel it. 

I had just had a baby when my thyroid quit on me. I had a toddler and and infant and I would wake up after 8 hours of sleep and feel like I had not slept at all. I was so tired all the time. Then it became an effort to me to take care of my kids but and I still didn’t go to the doctor. I remember feeling like it was so much effort to write a check out to pay a bill. I had trouble holding the pen in my hand and using enough pressure to make it work to write. I remember how much effort it was to speak. It felt like my tongue was heavy. Finally I went to the doctor for something else and he asked if there was anything else he needed and I just mentioned how tired I was but had attributed that to having a toddler and an infant. Who wouldn’t be tired, right!?  He decided to test my thyroid with a TSH (thyroid stimulating hormone) test and sent me on my way.  Turns out my TSH was around 150 when he considered normal to be around 5 so he put me on levothyroxine and tested my TSH for the next few months until he found a dose that brought my TSH to an acceptable level for him.  

I thought I was going to be alright.  Truthfully, I have not really felt like myself since that original diagnosis but I quit looking to feel like that old person and have embraced the challenges I have faced since being diagnosed. I went 8 years before I realized my diet played a huge role in how good I would and could feel. I also went 8 or so years before being diagnosed with Hashimoto’s. Most people who are hypothyroid actually have Hashimoto’s but are not diagnosed because the standard of care does not change. You get your TSH tested. It continually rises and your medication has to be adjusted. That is it. 

When I was diagnosed with Hashimoto’s I was actually a bit relieved because I felt like I had some control about what I could do to feel better.  I went from feeling great most of the time to feeling bad most of the time. It is so frustrating to feel bad all the time. To have blood sugar regulation problems and have your adrenals not working properly so that you are exhausted after doing some laundry is really frustrating. Especially when you don’t know how to fix it. Getting that diagnosis put my health back in to my own hands and I was able to fix a lot. I changed my diet. I went gluten free first. Then I had some food sensitivity testing done and went dairy free (something I suspected I needed to do based on how terrible I felt after eating ice cream) and had to cut out some other foods as well. That was a first big step and a pretty big adjustment but I wanted so badly to feel better that it was something I was willing to do. 

I also needed to get my blood sugar under control. I was a sugar lover. I needed sugar and refined carbs to get me through the day. At least that is what I told myself. Cutting out sugar was one of the best things I ever did. Managing my sugar intake also meant that my adrenals would be in better shape and so would my hormones. 

I was eventually led to a more nutrient dense whole foods diet and am now experimenting with an Autoimmune protocol which eliminates nightshades (tomatoes, potatoes, peppers, eggplants), eggs, nuts, and grains (I might be forgetting something). I decided to go AIP because I still didn’t feel good despite doing everything right. I think there may be some heavy metal toxicity as my root cause but have not had any testing done to find out for sure. As it goes with Hashimoto’s, there is an immune system dysfunction and something to have caused that dysfunction to occur.  

Not really feeling well after five years of diet and lifestyle changes led me to realize that I needed to fix the root cause and I also needed to find a doctor that would treat my symptoms as well as my lab work. I found a happy medium with a holistic MD that takes insurance so she does not have access to some of the tests that might find my root cause but for now I am okay with that. She was willing to prescribe natural desiccated thyroid medication because they synthetic levothyroxine was not working. 

My dose was recently increased and it made me feel worse. The biggest affect from the medication change for me was that I was not sleeping. I would be jolted awake 2-3 nights a week at around 3 am and never would fall back asleep. I asked my doctor to change my meds back and she wanted to wait. I had gotten just enough meds to get me through until I needed more blood work so I asked them for a bit more to get me through to the next draw. I knew in my gut that the medication was causing me to wake up but felt a little helpless to do anything about it because even my holistic doctor wouldn’t change it for me just yet. She had me taking half a dose (cutting a pill in half) in the morning and half a dose in the early afternoon. Turns out that is not a good idea either because there is no real way to make sure each half of the pill has the same amount of thyroid hormone in it. That first half dose could have little to no thyroid hormone in it while the second half had most of the thyroid hormone in it. There is just no way to know. So, the only way I was able to sleep would be to take only half a pill or no pill at all and neither of those choices were a good idea long term. 

The clinic called in a prescription for me to get me through until my next blood draw and when I went to pick it up I asked to see the ingredient list for the meds. The pharmacy couldn’t find it and I asked to see the bottle so I could take a photo of it. When they showed me the bottle I told them that is not the medication I was taking previously. They told me that they had run out of that and had this one in stock and so they filled my prescription with that. I knew that pharmacies could and did do this but it never occurred to me that it would happen to me. First I was glad because the medication they switched me to was the medication I had wanted my doctor to let me try. Then I got a little angry. I thought to myself, If I am this sensitive to a medication change, I wonder how many other thyroid patients are also. I told the pharmacy they should not switch up thyroid meds like that on people because many of us are extremely sensitive to changes like that and we might not know what is causing the problem. Some people do well on a specific medication and it should never be changed on them. 

If you are doing well on your medication, make sure you get the same medication EVERY time you go get your prescription. You can have your doctor make a note in the prescription they write for you to the pharmacy so that a change like that doesn’t happen to you. This particular medication that I didn’t ask for happened to be a good thing but that is not always the case. I am happy to report that I have slept really well since the change in medication even with a full dose. 

If you take anything away from this story, know that you can have some control over how hypothyroidism or Hashimoto’s will affect you and your body. You don’t have to feel terrible. You don’t have to be tired. You don’t have to give up and you don’t have to be a victim to this disease. 

You can be happy. You can have energy. You can feel good again! 

Tell me in the comments how thyroid disease has made you feel and if or what you have done to feel better. 

In Health, 

Stephanie