Navigating Hypothyroidism - A Guide to Advocating for Your Health
Over the past few years, it seems as though more and more friends in their 20s have found themselves dealing with unexpected health issues. Blood tests and checkups become more routine as we begin to identify what ailments we will need to deal with for the rest of our lives. This is occurring when we are beginning to navigate the health care system independently, making things all the more complicated.
For me, this adventure began when my primary care physician noticed that my neck was showing signs of thyroid distress in 2015 (in my late teens), and we proceeded to get blood work done at Shands in Gainesville, FL. This part of the process is a little bit hazy for me as our doctor said that there was a high likelihood that I would develop hypothyroidism at some point, but there was no need to start lifelong medication before I was showing symptoms. We were instructed to keep an eye on it and go to an endocrinologist once I noticed any changes in energy, weight, brain fogginess, etc.
Fast forward a couple of years, and I am doing my masters degree in England (beginning September 2018). While this placement was everything that I had dreamed about, in January of 2019, I found myself struggling to stay awake in classes, while writing papers, and studying. I was unable to focus in the library, something that I had no issues with in the past. Physically, I found that I had no motivation to get out and explore the new city and country that I was living in, even though I mentally wanted to soak it all in. Naps were a daily occurrence - sometimes multiple times a day. I became anxious and depressed, even though I had new friends and the support of friends and family at home. I did not feel like myself and went to the uni health center to see if they could figure out what was wrong.
I'm not sure at what point hypothyroidism came into the discussion, but once I remembered the visits to the doctor in 2015 it all began to make sense. I researched the disease in depth and learned that my symptoms matched those of hypothyroidism. My mother also has thyroid issues, and this disease can be hereditary. I thought that the mystery was solved, and the health center would simply need this information to begin providing me the necessary medicine to bring me back to life. Unfortunately, this was not the case.
I soon learned that things were not going to be as easy as I had hoped. The public health system in England is called the NHS, and they have firm requirements for the diagnosis of thyroid disorders. Hypothyroidism is unique for everyone, and research continues in determining how this disease works. A friend of mine had a TSH level greater than 10.0 mlU/L, and showed symptoms that were similar to mine, even though my TSH level was around 5.0 mlU/L. I was sluggish and felt like my body was shutting down, but my TSH of 5.0 mIU/L did not meet the NHS's defined range to treat my hypothyroidism with levothyroxine.
This blood test occurred in July of 2019, and after multiple visits to the uni health center, it became clear that they would not treat my hypothyroidism. This led to a strenuous research and dissertation process, a need to leave the UK earlier than preferred, general discomfort, and anxiety. If there is one thing that I advocate for in the research of thyroid diseases, it is an understanding that each person's body reacts differently to the disease, and setting a standard range for treatment that does not address family history and severity of symptoms is harmful.
I wish I could say that it was easy to get treated once I returned to the USA, but the difficulty with thyroid diseases is universal. While there were not necessarily government mandated TSH ranges to deal with, there was a discrepancy between doctors on what is mild hypothyroidism that does not need to be addressed yet and what counts as hypothyroidism that should be treated. Since returning, I have had a women's health doctor confirm that my symptoms and blood work indicate hypothyroidism, but then was later denied treatment due to the office's PA deciding that my TSH was not high enough. It is incredibly difficult to be told time and time again that you are wrong about your body and symptoms, and it is crucial to persevere and advocate for yourself and your needs. I am writing about this now because I read about others' experiences struggling to find a doctor who would address their disease, and I wanted to be able to encourage others to keep going as well.
Finally, in November of 2019, I returned to the primary care physician who had noticed my abnormal thyroid in 2015. At this point I was sobbing at every appointment I went to, as I felt like my health was spiraling out of control and health systems were failing me. If my doctors would not do anything to help me, where was I supposed to turn? Thankfully, this one was the doctor who would look at my blood work, symptoms, and family history and confirm that I should have received treatment at that first appointment in England in July of 2019. This means almost a full year of brain fogginess, weight gain, depression/anxiety, and exhaustion - most of which was spent in a foreign country.
In November 2019, I began the hypothyroid medication, levothyroxine. This medication has to be increased gradually, so I started at a dosage of 20 mg and went up from there. Levothyroxine can only be increased after a blood test (taken after six weeks of the current dosage) confirms that the medication is working. I went through this process a number of times until I reached a dosage of 64 mg, which seems to feel like the right amount for me and has brought my TSH down to 2.04 mlU/L in May of 2020.
I have since met with an endocrinologist, who confirmed that my treatment seems to be on the right course. This disease will require me to take daily medicine for the rest of my life, but after experiencing what happens to my body without this medicine, I am happy to deal with the mild inconvenience. I'm hoping my story will provide hope for those who are dealing with the same, or similar, diseases. Being a young person who has to repeatedly tell doctors that there IS something wrong, and it needs to be addressed and treated is incredibly hard and exhausting, but advocating is what will find you the right doctor in the end.
My symptoms included:
-inability to focus
-irregular menstrual patterns
My blood work numbers were:
July 2019 (UK measurements)
TSH- 5.0 mlU/L
T4 level- 14.5 pmol/L
TSH- 4.54 mlU/L
T4 level- 1.1 ng/dL
January 2020 (after lowest dosage of levothyroxine for six weeks)
TSH- 4.7 mlU/L (showing no change - dosage would need to be increased)
T4 level- 1.1 ng/dL
March 2020 (increased dosage)
TSH- 3.95 mlU/L (small change! my doctor was happy to settle with this, but I advocated for increasing the dosage as I still felt exhausted)
T4 level- 1.3 ng/dL
May 2020 (increased dosage)
TSH- 2.04 mlU/L (HUGE improvement at 56 mg of levothyroxine a day)
T4 level- 1.2 ng/dL
This article is to explain how I navigated my disease, but this does not mean that these numbers will match anyone else's or that my dosage is right for anyone else with similar numbers. Hypothyroidism is different for each person it affects. I'm happy to answer any questions regarding my own personal experience.
There's still more testing to be done in order to finalize the dosage that works best for me. Currently I am at 64 mg of levothyroxine, but I haven't had the blood test to see how this affects my TSH and T4 levels. I do feel SO much better and my friends and family have noticed my gradual return to being energetic, confident, and active, so I have high hopes for continuing to deal with this in the future.