DISCLAIMER (August 14, 2022): 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.
NOTE: This article contains aspects of my personal story which are clearly marked. My personal experience is not objective data. The pictures are provided only so that people can better understand what the “weight gain” of hypothyroidism can look like, and how different it is from ordinary weight gain.
In-person visits to the doctor have been minimal over the past two years, and it has been easy for people to discount symptoms such as body aches, headaches, fatigue, and ‘brain fog’ to having had Covid, or to having ‘long Covid’ [1]. It was only when I began having symptoms that were not consistent with Covid that I began to think that it might be hypothyroidism. You can read my personal account here.
I am not that old, but at the beginning of June (two months ago), our family was in Tofino (Vancouver Island) for the marriage of my youngest son. The groom’s eldest brother assumed that my inability to walk on the sand, up the path to the hotel, or get up from a chair was a result of me having “aged.”
He had no idea that I was hiking in North Vancouver and Golden Ears Provincial Park for several hours at a time last summer. I knew that it was abnormal for me to feel so exhausted and for my muscles to feel so weak, and one look in the mirror told me something was very wrong.
In a matter of just a few weeks, I went from looking as I have the last two years to looking as I did when I was 55 pounds overweight. For the sake of this special occasion, I said nothing to my family, but was very concerned for my health. It was also exceedingly hard for me to be in family photographs that I knew would be viewed for years to come.
I planned to contact my doctor when I returned home and have him assess me to determine whether I had what I suspected was hypothyroidism.
Last Friday, my doctor confirmed that my symptoms were consistent with that diagnosis. I was surprised when he said that it was not unexpected in light of my lab work over the previous nine years, my past thyroid surgery many years ago, and my having experienced periodic hypothyroid symptoms since that time. Unfortunately, it took almost a decade for me to get diagnosed because of the limitations placed on doctors regarding which tests they can requisition under what circumstances.
Common Hypothyroid Symptoms May Often be Assumed to be Aging
- from https://www.thyroid.org/thyroid-disease-older-patient/
People assume that it is normal for ‘older adults’ to have body aches, joint pain, fatigue, feel chilled when others do not, experience constipation, have dry skin or hair loss, be forgetful, or to even experience depression. However, these are NOT typical signs of aging but ARE common symptoms of hypothyroidism.
The above-mentioned symptoms are so non-specific that many would not give them a second thought. An older person who is already limited to a one-issue-ten-minute remote doctor’s appointment would likely be hesitant to book a phone call to discuss these symptoms with their doctor. After all, they would conclude, these could be the result of so many different things, or “just the normal effect of aging”.
Consider constipation as an example. Chronic constipation affects 15% of adults and is the sixth most commonly reported GI symptom [3]. Within the context of a lack of mobility that we have all faced due to lockdown restrictions, how many people would give increased constipation a second thought?
Consider mood changes as another example. It is well-documented that the social isolation associated with the pandemic lockdowns has taken a toll on the mental health of people of all ages. It is easy to attribute symptoms of decreased cognitive function, forgetfulness, or even depression in older adults to increased social isolation rather than considering a diagnosis of hypothyroidism.
Symptoms such as loss of hair on the legs or arms may be attributed to the natural process of aging, and while it is normal to have less hair on the arms or legs as people age, it is not normal to lose all the hair. Although no longer needing to shave or wax one’s legs may be perceived as a benefit of aging (like no longer having a ‘period’ after menopause), a complete loss of hair on the legs or arms is something that is not a normal part of aging. Symptoms like these should be brought to the attention of one’s doctor. Likewise, while it may be nice for someone not to feel as sweaty in the heat of the summer as one did when they were younger, sweating is how humans stay cool, and decreased sweating can be dangerous!
Symptoms of constipation, hair loss on legs and arms, decreased sweating, forgetfulness, and mood changes such as depression are not part of “aging” but are symptoms that one’s doctor should assess.
Untreated Hypothyroidism can be Dangerous
Myxedema describes advanced hypothyroidism that occurs when the condition is left untreated or inadequately treated [4]. This term is also applied to hypothyroidism’s effects on the skin, where it looks puffy and swollen and takes on a waxy consistency [4].
Below is a photo of what I looked like hiking 3 months before my son’s wedding, what I looked like with myxedema at his wedding, and what I look like today. I don’t share these photos easily because my son’s wedding was a special occasion, and not only did I look and feel terrible, in retrospect, I was very unwell. I am sharing them so that people can understand what the edema / myxedema of hypothyroidism looks like and how quickly it can progress, and how serious hypothyroidism can be if left untreated or undertreated.
Myxedema of hypothyroidism is very different from ordinary weight gain. I hope that by sharing these photos people will be better equipped to recognize this symptom in themselves or in others, and ensure that medical attention is sought.
Getting Diagnosed
Each province in Canada sets its policy for provincial medical plans covering laboratory tests. In the US, which testing is covered is determined by whether they are performed by in-network or out-of-network labs.
In British Columbia, thyroid testing covered by the provincial health plan is determined by a 2018 document titled Thyroid Function Testing in the Diagnosis and Monitoring of Thyroid Function Disorder [2]. These guidelines outline testing for thyroid stimulating hormone (TSH), free thyroxine (fT4), free triiodothyronine (fT3), and anti-thyroid peroxidase (TPO).
Unless someone has specific risk factors for thyroid disease (older age, strong personal or family history of thyroid disease, taking drugs such as lithium (used in bipolar disorder) or amiodarone (used in cardiac dysrhythmia), or grew up in a developing country known to have either iodine excess or deficiency), individuals are required to exhibit several of the specific symptoms listed below to even qualify for thyroid hormone testing.
The problem is that typical symptoms such as cold intolerance, edema, decreased sweating, and skin changes often don’t appear until much later in the progression of the disease. Moreover, in some individuals, these symptoms do not appear at all.
Furthermore, as outlined in the previous article, even if a person meets the criteria for a TSH test, the results would need to come back significantly higher than the cutoffs to qualify for a free T4 (fT4) or free T3 (fT3) test.
People here and in other places with similar policies have no choice but to live with many symptoms documented to be associated with hypothyroidism but outside narrowly defined diagnostic criteria until they become sick enough to warrant testing.
NOTE: these photos are for illustrative purposes only.
[LEFT: me hiking March 5, 2022. MIDDLE: me at my youngest’s son’s wedding on June 3, 2022, only 2 months ago. RIGHT: Me today (August 8, 2022), only two months after my son’s wedding with 75% of the edema resolved.
UPDATE [August 25, 2022] The photo on the left was taken 2 ¾ months ago. The photo on the right was taken today, 2 months after beginning treatment for hypothyroidism. They are provided only as an illustration of what symptoms can look like and how quickly they can resolve with medical treatment. (I deliberately left the lines marking the hairline and chin to make comparison easier.) 
LEFT: before diagnosis and treatment RIGHT: 2 months after diagnosis and starting treatment [for illustrative purposes only]
The photos below are of my left leg without edema and with it. While my legs are still ‘waxy’ looking from the myxedema, the extreme swelling resolved within a few days of beginning thyroid hormone replacement. This photo is for illustrative purposes only and does NOT provide any clinical information.
While each person may exhibit different symptoms, this is fairly typical of the length of time over which the “weight gain” of hypothyroidism can occur, and also the time-frame over which it can resolve with treatment.
It is important to understand that untreated hypothyroidism can progress and the results of a myxedema crisis which can be fatal. The death rate for a myxedema crisis is between 20-60%, even with treatment [5].
A myxedema crisis is often incorrectly called a ‘myxedema coma,’ but this term is misleading since the person rarely experiences a coma.
The most noticeable feature of a myxedema crisis is the person’s significant deterioration in mental function [5]. The slowness of thought, decrease in attention, and apathy can easily be confused with symptoms of depression[6], but in severe untreated hypothyroidism, people can exhibit significant agitation and even psychosis and paranoia, referred to as “myxedema madness” [6]. In addition, there have been cases reported in the literature of people hospitalized with suspected affective (mood) disorders such as bipolar disorder– even psychosis that turned out to be a myxedema crisis and that resolved with thyroid hormone treatment [7].
A myxedema crisis may occur because someone had untreated hypothyroidism. It can also happen because someone stopped taking their medication or was taking an incorrect dosage. Therefore, being correctly diagnosed, treated and followed by a physician is essential.
I found the following explanation from a recent article on hypothyroidism [8] very helpful as it explains how different people with the condition may have various symptoms.
“It is important to maintain a high index of suspicion for hypothyroidism since the signs and symptoms can be mild and nonspecific and different symptoms may be present in different patients. Typical features such as cold intolerance, puffiness, decreased sweating and skin changes may not be present always. Inquire about dry skin, voice changes, hair loss, constipation, fatigue, muscle cramps, cold intolerance, sleep disturbances, menstrual cycle abnormalities, weight gain, and galactorrhea (nipple discharge not associated with lactation / breastfeeding). Also obtain a complete medical, surgical, medication, and family history” [8].
Note (August 15, 2022): Over-treatment with thyroid hormones also poses a risk of thyrotoxicosis, or “thyroid storm,” outlined in this newer article.
Final Thoughts…
By virtual of their age, older adults in British Columbia qualify for thyroid testing. If older people exhibit even a few of the common symptoms of hypothyroidism, such as long standing body aches or joint pain, unexplained fatigue, feeling usually chilled, constipation, dry skin or hair loss, forgetfulness or depression, this should be brought to their doctor’s attention. These are not typical signs of aging but are common symptoms associated with hypothyroidism.
For younger individuals without preexisting risk factors and that do not have the specific symptoms listed on the diagnostic criteria, the reality is that they do not qualify for testing. Unfortunately, they will need to get quite unwell before they are able to be diagnosed and treated, and their doctor’s hands are tied by a system that will not enable them to test T3 or T4 — even in the presence of high-normal TSH, or symptoms known to be associated with hypothyroidism, but not on the diagnostic criteria list.
Surely, there has to be a way that people can be tested, but that does not put additional financial strain on an already overtaxed public healthcare system?
Currently people have two alternative options;
(1) pay significant out of pocket costs to see a Functional Medicine MD or Integrative Health MD where they can be properly diagnosed and treated.
(2) pay a naturopath added costs for them to requisition thyroid tests, but one concern is since they are not medical doctors, they do not have the training to rule out liver, kidney or heart disease that can mimic many of the same symptoms as hypothyroidism, and that requires medical attention.
In the previous post, I mentioned the option of enabling patients to self-pay at the same cost as the government pays for TSH, T3 and T4 tests. This way if the lab tests results come back abnormal, their doctor can oversee both diagnosis and treatment (or refer them to an endocrinologist).
In British Columbia, someone can pay (at government rates) $9.90 for a TSH test, $12.12 for a free T4 test, or T4 or total thyroxine test, and pay $9.35 for a free T3 test [9]. Under the current system, the government only applies a lab volume discount (based on 2011-2012 volumes) for some fee-for-service (FFS) tests [10] so under this model, only 38% of tests are reimbursed at 100% of the published fee, whereas 62% are only reimbursed at 50% of the published fee [3]. It is not clear from the government publication which rate applies to thyroid testing, but even if people are required to pay 100% of the costs, the total cost of a TSH test, and a free T4 test, and a free T3 test is just over $30.
I was disheartened to learn recently that even if patients are willing to pay the full cost of thyroid testing, their doctor is under no obligation to write the lab requisition. This is because licensing requirements require doctors who write a lab test requisition to also take responsibility to oversee care based on those results. Unfortunately, not all doctors are willing to treat those with subclinical hypothyroidism.
How I May be Able to Assist
I currently assist my clients in requesting that their doctor refer them to an allergist if I believe there is clinical reason to suspect IgE mediated food allergies. I also will request that a doctor requisition a fasting insulin (or c-peptide test) along with a fasting glucose if based on assessment I have reason to suspect a person’s pancreas may be working too hard to keep fasting blood glucose and HbA1C in the normal range. In the same way, if I have clinical reason to be concerned about a person’s thyroid function, I will request that a doctor requisition thyroid testing. These requests are by no means a guarantee that a person’s doctor will agree to requisition blood tests, but it has been my experience that when clinical concerns are documented, most doctors are willing investigate further.
More Info
If you would like more information about the services I provide people who are newly diagnosed with hypothyroidism, please send me a note through the Contact Me form, above.
To your good health!
Joy
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References
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- John Hopkins Medicine, Long COVID: Long-Term Effects of COVID-19, June 14, 2022, https://www.hopkinsmedicine.org/health/conditions-and-diseases/coronavirus/covid-long-haulers-long-term-effects-of-covid19
- BC Guidelines & Protocols Advisory Committee, Thyroid Function Testing in the Diagnosis and Monitoring of Thyroid Function Disorder, October 24, 2018
- Bharucha AE, Lacy BE. Mechanisms, Evaluation, and Management of Chronic Constipation. Gastroenterology. 2020;158(5):1232-1249.e3. doi:10.1053/j.gastro.2019.12.034
- Medical News Today, What is Myxedema and How is it Treated, April, 22, 2022, https://www.medicalnewstoday.com/articles/321886
- Elshimy G, Chippa V, Correa R. Myxedema. [Updated 2022 May 22]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing. https://www.ncbi.nlm.nih.gov/books/NBK545193/#_NBK545193_pubdet_
- Samuels MH. Psychiatric and cognitive manifestations of hypothyroidism. Curr Opin Endocrinol Diabetes Obes. 2014;21(5):377-383. doi:10.1097/MED.0000000000000089
- Heinrich TW, Grahm G. Hypothyroidism Presenting as Psychosis: Myxedema Madness Revisited. Prim Care Companion J Clin Psychiatry. 2003;5(6):260-266. doi:10.4088/pcc.v05n0603
- Patil N, Rehman A, Jialal I. Hypothyroidism. [Updated 2022 Jun 19]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing;
- Government of British Columbia, Ministry of Health, Schedule of Fees for Laboratory Services – Outpatient, Payment Schedule, revised April 1, 2022, http://www.bccss.org/bcaplm-site/Documents/Programs/laboratory_services_schedule_of_fees.pdf
- BC Agency for Pathology and Laboratory Medicine (BCAPLM), Outpatient Payment Schedule, Laboratory Volume Discounting (LVD), http://www.bccss.org/clinical-services/bcaplm/health-professionals/outpatient-payment-schedule
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