Three weeks ago, I wrote an article about how a diagnosis of hypothyroidism is made and why it takes until someone has been unwell for quite a while before they are finally diagnosed. In one sense, that article laid the foundation for this one.
DISCLAIMER: This article a personal account posted under A Dietitian’s Journey. The information in this post should in no way be taken as a recommendation to self-diagnose, self-interpret diagnostic tests, or self-treat any suspected disorder. It is essential that people who suspect they may have symptoms of any condition consult with their doctor, as only a medical doctor can diagnose and treat.
Two years ago, in the summer of 2019, I was feeling fantastic and was in remission of type 2 diabetes and hypertension and was celebrating my “little black dress moment.”
In August 2020, I had what my doctor assumed was Covid (back pain, non-stop headache, and couldn’t stop shivering) and since at that point the line up for a nasal swab was 6 hours long due to one of the testing sites closing, my doctor recommended that I simply assume I was positive, and self-isolate for two weeks, which I did.
For many weeks afterwards, I had overall muscle pain and weakness, as well as tingling and numbness in my fingertips, what is referred to as “brain fog”, and unbelievable fatigue. I went from being reasonably active and fit in the spring, to finding it difficult to even walk up or down a flight of stairs by August. Covid was new at that point, so none of us knew what to expect, but it took months until I began to feel reasonably normal. I learned to live with the muscle aches, joint pain, ‘brain fog’, and fatigue. The joint pain persisted for a long time, and was assumed to be post-viral arthritis as I had this once before when I had rubella as an adult.
Despite having had both vaccines (April 2021, July 2021), in March of 2022, I came down with what my doctor assumed was Covid again. At first, the symptoms were pretty much the same as in August 2020, muscle aches and joint pain, being exhausted, feeling cold all the time and my lips were frequently blue, but I did not have a headache. I was loaned an oximeter by a family member who is a nurse and I found it quite strange that my body temperature was always two degrees below normal even though I had fever-like symptoms of being cold and shivering. The muscle aches were significant, as was the fatigue, but since these are also symptoms of Covid, I didn’t think much of it. It was only when I began to develop symptoms that were not associated with Covid that I began to become concerned. One of those symptoms was non-pitting edema in my lower legs and feet, and I don’t mean just a little bit of swelling. Below is a picture of before, and during;
I ordered compression stockings on-line and wore them daily to help keep the swelling down, but carried on working and writing the book, even though I was very tired all the time. I also began to have a very weird sensation in my mouth – my tongue became enlarged, and the salivary glands under my tongue were swollen. Since both of these affected my sense of taste, I thought this may be related to Covid, but then it progressed to the point where I found it difficult to talk properly because my tongue seemed too big for my mouth. I also began losing hair, but this had occurred several years ago, too. At the time, my TSH was “in the normal range”, so no further testing was done (see this article to know why TSH alone is not good indicator of hypothyroidism, especially when it is at the high end of the normal range, which mine was). In retrospect, the subclinical problem with my thyroid has been going on quite a while. Sometimes it would be worse than others, which is not unusual.
Fast forward to two months ago (beginning of June), which was my youngest son’s wedding. I was still experiencing fatigue and muscle aches, chills that would come and go, would get bluish lips, and continued to have significant (non-pitting) edema in my legs and ankles, and was wearing compression stockings all the time — even at the wedding. The skin on my cheeks had become flaky and dry and despite trying multiple types of intense moisturizers, nothing helped. My mouth symptoms had progressed to the point that I found it difficult to say certain words when speaking with my clients because my tongue seemed too large for my mouth, and the salivary glands underneath my tongue were swollen. I continued to have overall muscle aches and weakness, but it had slowly progressed to the point where it was difficult for me to get up from a chair, or to get out of my car without pushing myself up with my hands. I was wondering if I had some form of “long-Covid,” but what got me starting to think that my symptoms had something to do with my thyroid was the very noticeable swelling in my face. At my son’s wedding I looked like I did when I was 55 pounds heavier, but without significant weight gain.
After doing some reading in the scientific literature, as well as chatting with a couple of functional medicine doctors, I began to think that my symptoms were consistent with hypothyroidism. In addition, I knew that when I was in my early 20s I had a benign tumour removed from the isthmus of my thyroid and as part of the pre-surgery work up, I had an x-ray that required me to drink radioactive iodine. It wasn’t known at the time but it is known now that both the surgery on the thyroid (even though it remains largely intact), as well as the exposure to high doses of radioactive iodine can initiate a process that can lead to hypothyroidism years later.
It is also apparently possible that having had Covid back in 2020 may have initiated it and/or it may have been initiated as a response to the having the vaccines. I am not blaming either the virus or the vaccines because my thyroid surgery and exposure to high doses of radioactive iodine predated this by decades, but they may have been the precipitating event to symptoms. It is also possible that symptoms would have started on their own simply as a result of age.
I knew I was unwell and needed to see my doctor in person. After my son’s wedding, I called his office and wanted to go in and have him assess me for hypothyroidism, but he was out of town. Instead of meeting with the locum, I decided to wait until he was back. In the meantime I began using some supplements that are involved in thyroid metabolism, such as kept (for iodine), selenium and some other nutrients and while they helped a little bit, it was not significant. After doing a great deal of reading in the literature and listening to several medical presentations by a well-known endocrinologist and professor of medicine from the US, I decided while waiting to see my doctor that I would try using a very small amounts of another type of supplement to see if it made any difference in my symptoms. I introduced it at half the rate and half of the dose usually used because (1) I had not yet seen my doctor (was not under medical supervision yet) and (2) I was aware that use of this supplement was not something to be taken lightly as it can cause problems for older individuals, or those with heart disease (which I don’t have).
This morning I saw my doctor for the first time since Covid began. I had sent him a fax last week outlining the ways I had improved because I knew it was too much information for a 10 minute visit. I explained that I was feeling significantly better. My face swelling had gone down a great deal, the edema in my legs had almost disappeared – to the point that I could walk around bare-legged in the excessive heat we had last week with NO swelling what-so-ever. The skin on my legs is still very tight and shiny, but no edema. I lost 5-6 pounds of water-weight (face, legs and abdomen) and most noticeable, the muscle weakness is gone! I could walk up and downstairs, carry heavy parcels, and can get up from a chair or out of my car with ease. I also explained in the fax that I rarely feel cold, but still have occasional blue lips and chills late in the afternoon, but that from what I’ve read in the literature, many people do better on the same amount split over 3 doses, rather than two.
When my doctor entered the examining room, he said he had just re-read the fax and based on what I wrote, he thinks it is very likely that I have hypothyroidism, but he wants to rule out other things that could look like it and aren’t, or that mimic it. He wasn’t in a rush, like he usually is. He looked at the pictures I had on my phone —ones I had taken of my legs, my tongue, my face. When he saw the picture of me two months ago at my youngest son’s wedding, he simply said “oh my.” He then gave me a very thorough examination. He palpitated my thyroid and listened for a long time to my heart and lungs. After examining me, he pointed out several other physical symptoms that I have that are quite consistent with hypothyroidism, and said “Joy, I think your conclusion is right on.” I was somewhere between shocked and elated.
My doctor then brought up my past lab work on his screen and remarked that my TSH has been “high normal” since 2013 (see below), and that I often had low ferritin with no explanation, as well as past “unexplained” issues with hair loss. I had nine years with subclinical symptoms but no testing could be done because as indicated on the lab test results below “The free T4 was cancelled. The protocol recommends no further testing.“
I mentioned to him that I wondered what the results would have shown if my T3 or T4 were tested in 2013, or 2015, when my TSH was high-normal. He replied “unfortunately, unless someone has clear symptoms that are consistent with hypothyroidism there is nothing we can do, but your symptoms are very consistent now, but I think this diagnosis was a long time coming.” Surprisingly, we saw eye to eye.
I think my doctor realized that the guidelines being as they are means that people like me have to get quite unwell before they are finally diagnosed and treated. I realized that his hands were effectively tied by a system that will not enable him to test T3 or T4 even with high-normal TSH, without overt symptoms. He could do nothing until I got much sicker.
I was delighted by his response. He has been my doctor for 20 years and was not receptive to my use of a low carb and then a ketogenic diet to put my type 2 diabetes into remission, and previously refused twice to test my fasting insulin, along with my fasting blood glucose. Today he was very different.
When I asked if he was going to refer me back to the endocrinologist I used to see when I was diabetic and have her manage my thyroid replacement medication and he said “No. I don’t believe in changing something that is clearly working. I want you to keep taking what you’re taking in the same amount you are now, and I am going to run some lab work to see if you have gotten the amount right. We may need to increase it a little or change the timing to address the late afternoon chills, but no, I’m not going to “fix” something that is no longer broken.” He even agreed to add a fasting insulin test, without any protest!
I don’t know what happened to make my doctor change his mind and how he approaches these types of matters, but today I said to him that it has been a long time since I was this delighted with his approach, and that I am very thankful that he is my doctor because he practices good medicine. I offered him my hand and he shook it warmly and thanked me.
I guess if I can change how I practice dietetics based on new evidence, so can my doctor — or your doctor. Don’t give up, or be hesitant to have those difficult conversations with your primary care physician. We need them to oversee our care, and maybe just maybe in the process of interacting with some patients, they learn something they didn’t before, or change because of things they see in their practice. The bottom line was that I needed my doctor to know what I was doing and to examine me and make sure I was not doing something that could cause me harm. He not only rose to the occasion with grace, but responded in a manner I could have only dreamt of before.
I do not believe that self-treating is ever advisable, and certainly if it were not for Covid and my doctor not having in-person office hours unless it was an emergency, I would have gone to see him months ago. I am glad I saw him today and am very thankful that he is being so supportive.
I know once we get the levels of thyroid hormones right, that losing the 20 pounds I gained over the pandemic will be possible, but in the meantime, it is no small matter that I got my life back!!
A Dietitian’s Journey continues…
To your good health,
Joy
I don’t post the comparison picture below easily. It is very hard for me to see how bad I looked, but it is important to see just like the leg pictures, above. The photo on the right was taken at my youngest son’s wedding, June 3, 2022 (exactly 2 months ago) at the height of my hypothyroid symptoms. The photo on the left is a selfie I took today, August 5, 2022, almost exactly two months later. There is still swelling in my face and legs to come down, but any adjustment in thyroid meds only be done after the upcoming lab work.
NOTE (August 15, 2022): It is important to keep in mind that too little, or too much thyroid hormone can have serious consequences.
Untreated or under-treated hypothyroidism can be serious and is when the body gets too little thyroid hormone. This can lead to a myxedema crisis (covered in this article).
Thyrotoxicosis can also be serious and is when the body gets too much thyroid hormone. This can occur in untreated hyperthyroidism, or by self-treating hypothyroidism (covered in this article).
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