On Thyroid Disorders & COVID

Protect your thyroid, take COVID precautions

Note: I started writing this a few months ago and never posted it. I want to make this a part of a series on disability-related issues that relate to COVID that I have some firsthand experience with, including one on POTS (a type of dysautonomia that I have), so be on the lookout for the other parts of the series if that interests you. 

The summer of 2018, I experienced a flare-up of new symptoms that were frustrating and in some ways terrifying to me. Two of the symptoms were increased levels of chronic pain and fatigue, which I still struggle with and was not too alarmed by as I had experienced them before. The others were daily pins and needles, muscle spasms and tremors, muscle weakness, headaches, eye pain. I felt out of place in my own body, unsure of why I was experiencing this storm of bizarre symptoms. I - like many patients - googled them to see if there was a simple explanation, maybe one that would reassure me or at least help me understand what was happening. Most of that summer, I did not do much of anything. When I look back on it, all I remember is the daily fear I felt. I wrote poems about the experience to cope with it, that was one of the only things that got me through. 

Of course I ended up going to the doctor, multiple times. I even went to the emergency room twice because the symptoms got so intense. I had an MRI in case my symptoms were neurological, but my doctor decided it wasn't. Instead, he found another possible explanation for my symptoms: my thyroid. My thyroid was in a state called “hypothyroidism.” Your “TSH levels” are supposed to be between 0.2 and 4, but mine was at 32, meaning it was very underactive. Of course I turned to the Internet to learn more about this condition, and I found that hypothyroidism is commonly caused by an autoimmune disease called Hashimoto's Thyroiditis. To check for this autoimmune disease, they check for “TPO antibodies.” I went to the doctor again, still frustrated by my symptoms, and asked to be checked for this autoimmune disease. He seemed hesitant at first and a little skeptical of my request, as many doctors hate when patients turn to Google. But in the end he ordered the test, and sure enough - my TPO levels were at 267, when they are supposed to be below 34. I was diagnosed with Hashimoto's Thyroiditis, which means I will always have this thyroid condition, as opposed to some cases of hypothyroidism that resolve after a period of thyroid medication. I started taking a medication that quickly stabilized my thyroid levels and resolved many of the symptoms I was experiencing. Six years later, I still get my thyroid levels checked regularly and take the medication every day. 

Hashimoto's Thyroiditis is frequently misdiagnosed as anxiety or depression, like many chronic illnesses and autoimmune diseases. This was certainly a misdiagnosis in my case as well. The doctor, in his notes, frequently commented on my “anxiety” and how he thought that was exasperating my symptoms, and noted my history of depression. Patients with symptoms of mental illness, or histories of mental illness, are often viewed as less credible. If you experience anxiety or depression as a result of the condition or the symptoms you're experiencing, that anxiety or depression is viewed as the cause of the symptoms and doctors feel they have no need to investigate further. I am glad I pushed this doctor to give me the test to find out if my hypothyroidism was caused by Hashimoto's Disease, because otherwise I wouldn't have known I have this condition. Medical gaslighting is going to continue to become more widespread and harm more people, due to the increase in people with post-viral illness, autoimmune diseases, and other medical conditions following COVID infections, unless more is done to discourage it, whether by the medical community or patient advocacy.

Now, onto how my experience relates to the pandemic. There has been a growing number of patients diagnosed with thyroid conditions following COVID infections. There is a lot of research on this - all you have to do is Google it to see some of the research for yourself. In addition to Hashimoto's Disease and hypothyroidism, COVID infections have also been linked to Grave’s Disease, which is a hyperactive thyroid rather than an underactive one. I have been following this problem for years, worried about these new patients and also unsure of what it means for myself and others who already live with thyroid conditions. Could an infection of COVID - or two, or three infections - negatively impact the thyroid levels we are trying to manage? This is always going to be a fear of mine. Living with autoimmune disease is hard as it is. We have fears about things that could negatively impact our condition even in normal times. It is even worse during a pandemic (and no, the pandemic never ended). 

There is also evidence that COVID infections can cause thyrotoxicosis, or severely overactive thyroid. This risk likely exists for everyone, but because Hashimoto's Disease already heightens my risk for it, I am especially worried that a COVID infection could impact my own thyroid this way. Thyrotoxicosis can cause tremors and shaking, heart palpitations, hair loss, bulging eyes, sweating, a swollen thyroid gland, and fertility issues, among other symptoms. In severe cases, someone may need a thyroidectomy. Thyrotoxicosis can also lead to a life-threatening condition called Thyroid Storm. Symptoms of this include fever, jaundice, sweating, respiratory issues, stomach pain, alterations in behavior, seizures, and coma. 

Someone might look at my story and not understand why the risk of thyroid conditions matter, because they're fairly treatable. However, while they are much more treatable than some autoimmune diseases, despite the hell I went through that summer, I'm extraordinarily lucky. First off, I was diagnosed fairly quickly - for many people, especially due to medical gaslighting and medical racism, it can take much longer to get a diagnosis, meaning a much longer period of suffering without any help. Secondly, not everyone has an easy time finding the right medication dose, and for some people medication alone may not be enough - they may also need to find the right supplements or lifestyle changes to manage their symptoms. Thirdly, I'm also lucky in that I could even afford to see a doctor - many Americans are uninsured and without access to adequate medical care. And finally, it can be even harder to get specialist care now because of long wait times, which means if you have thyroid issues after COVID, you might suffer longer with an untreated condition. So yes, it is concerning that COVID can impact the thyroid and is leading to an increase in thyroid conditions. It should concern those of us who already have thyroid conditions, it should concern those of you without them who are likely now at an increased risk of developing them, it should concern all of us in general because we should care about the state of healthcare in this country, it should concern public health officials. It should also concern organizations for thyroid conditions and other autoimmune diseases, especially since infections have been known to cause these conditions for a while, but I have not seen much effort to educate the public about the risks of COVID infections from these groups. 

What should people do about this? The best way to protect your thyroid from COVID-related damage is to limit the number of times you get COVID. This means wearing a mask, testing before gatherings & asking others to do the same, cleaning the air with things like HEPA filters, looking into nasal sprays and CPC mouthwashes. If you want to be able to drink beverages while wearing a mask, look into buying a SIP Mask. Remember N95 and KN95 masks are more effective than cloth or surgical masks, so consider upgrading your mask if you still rely on cloth and surgical masks. Remember asymptomatic transmission exists and you are not immune to the negative effects of COVID just because you are vaccinated and “healthy.”

Since most, if not all of us, have had COVID at this point - we should all be on the lookout for symptoms that could indicate thyroid problems or other autoimmune diseases. Even if you have no symptoms related to thyroid problems, ask your doctor to do thyroid screenings if they aren't already. The most common and necessary test for detecting thyroid problems is the TSH test, which your doctor may be doing when you mention certain symptoms already. Even if you've had one recently that was normal but you're having symptoms commonly associated with thyroid problems now, I would recommend asking your doctor if they could test you again - in my case, I went from a normal TSH test result to a positive test result in the span of six months. 

I am of course not a doctor, but all of this is based on my own experiences with a thyroid condition as well as research I've read and accounts from others who ended up with a thyroid disease after getting COVID. I hope what I've written here will motivate someone to get their thyroid checked if they're able and to be more cautious about protecting themselves from COVID if they aren't already. I have been seeing more this past year in the media about the risks of COVID - I hope this continues. The public needs to be informed on all of the risks, and not just falsely reassured that COVID isn't a big deal or a serious problem anymore. 

Sources

https://www.dailydot.com/news/covid-caused-hashimotos-hypothyroidism/

https://emedicine.medscape.com/article/925147-overview#a8

https://www.mayoclinic.org/diseases-conditions/graves-disease/symptoms-causes/syc-20356240

https://www.healthcentral.com/condition/thyroid/everything-you-should-know-about-thyrotoxicosis

https://www.cureus.com/articles/174667-new-onset-graves-disease-with-thyroid-storm-after-covid-19-infection#!/

https://www.thyroid.org/patient-thyroid-information/ct-for-patients/october-2020/vol-13-issue-10-p-3-5/

https://www.hindawi.com/journals/crie/2023/8402725/

https://link.springer.com/article/10.1007/s12020-021-02770-6

https://www.sciencedirect.com/science/article/pii/S2214624521000174

https://journals.sagepub.com/doi/10.1177/03000605221082898

https://www.sciencedirect.com/science/article/pii/S1477893922000606?via%3Dihub

https://www.verywellhealth.com/hashimotos-encephalopathy-overview-3231700

https://finance.yahoo.com/news/covids-hidden-legacy-thyroid-disorders-084500358.html

Info on COVID precautions:

https://covidtoolbox.com/masks-respirators-fit-test/

https://covidtoolbox.com/clean-the-air/

https://covidtoolbox.com/nasal-inhahers-mouthwash-eyedrops/