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July 20, 2023August 17, 2023

The Death of Peers and Parents Should Change the Way We Live

Last week, I flew to Montreal to be with my mom in the last days before her death. While it was hard to see how much she had changed, it was sobering to be reminded of something I started to realize six years ago — that the death of friends and family should change the way we live.

The untimely death of two college friends in 2017 was the impetus for me to finally change my own diet and lifestyle. One of my friends died of a stroke and the other of a massive heart attack and both worked in healthcare their entire lives. As mentioned several times in “A Dietitian’s Journey,” I knew that my death would be next if I didn’t lose weight, lower my very high blood pressure and blood sugar.

While it took me twice as long as it should have to accomplish my health and weight goals due to undiagnosed hypothyroidism, I was successful in losing 55 pounds and taking a foot off my waist, and in putting my hypertension and type 2 diabetes into remission. Many times I was asked why I took accomplishing my goal so seriously and my reply was always the same, “I am doing this as if my life depends on it, because it does.”

When my dad was diagnosed with Alzheimer’s disease, I once again made some lifestyle changes. Even though I had put my type 2 diabetes into remission with diet, I began taking a low dose of the prescription medication Metformin preventatively, while continuing to eat a low carb diet. But, like many people, I became somewhat complacent and maybe even a little bit smug that diet alone was enough, and in the years since my dad’s death ended up discontinuing my medication, with my doctor’s knowledge.

Something that I was missing in my decision to discontinue this medication that I took prophylactically was that my health had changed, and I didn’t know it yet.

When I was diagnosed with profound hypothyroidism a little over a year ago, my doctor told me that even with taking thyroid hormone replacement medication that it would take a year and a half to fully recover due to how advanced it was.

I wanted to understand how my body had changed, so I did lots of reading in the scientific literature and learned about how hypothyroidism affected my heart rate, my blood pressure and cholesterol and wrote about it here. For a while I took a “baby dose” of blood pressure medication and made hypothyroid-specific dietary changes but eventually stopped taking it, and waited for the thyroid medication to reverse the symptoms. In retrospect, that may have been a bit naive. I was assuming these metabolic markers would return to normal in time, thinking that all I needed to do was wait the full year and a half to fully recover.

Recently, after an increase in thyroid medication I noticed that my blood sugar was significantly higher than it had been in years even though I had been compliant eating a low carb diet. Once again, I turned to the scientific literature to determine why. It was then that I discovered that all thyroid hormone replacement — even the “natural ones” raise blood sugar, and I wrote about that here.

Given my higher blood sugar and my late dad’s diagnosis of Alzheimer’s disease, I started back on the half dose of metformin, but it wasn’t until my recent visit with my mom, that I became less complacent.

Around the time my dad was diagnosed with Alzheimer’s, my mom was diagnosed with vascular dementia secondary to some mild strokes, known as TIAs. At first, the signs were subtle — things like difficulty organizing things she wanted to do into a list, but over the past few years, she lost the ability to read and write, and sometimes couldn’t organize her thoughts into coherent sentences. My mom didn’t have high blood pressure, but struggled her whole life with being overweight and was sedentary.

The important things for me — and that I wasn’t factoring in before was that my mom having had mini strokes, and later developing vascular dementia put me at risk because I now have moderate hypertension as a result of my thyroid condition. As well, my dad having had type 2 diabetes and developing Alzheimer’s disease increased my risk now that the thyroid medication wasn’t keeping my blood sugar in the non-diabetic range, as it had been for two years with diet alone.

It’s all nice and fine that I continue to eat low carb and workout at the gym, but in light of my thyroid meds raising my blood sugar, taking Metformin only makes sense. Likewise, it’s great that I achieved remission from hypertension with diet alone, but things have changed. My blood pressure has been moderately elevated since last year and discontinuing the low dose blood pressure medication hoping improved thyroid levels will normalize them is a bit naive. They may, but they may not.

While I was away in Montreal visiting with my mom, I made a phone appointment with my doctor. I told him about my mother’s diagnosis and my current blood pressure, and said I think it makes sense to take some blood pressure medication and to monitor it regularly. I also told him that I think given my blood sugar levels are higher even though I continue to eat low carb, that I think it only makes sense to begin taking Metformin again, and continue to monitor them regularly. He agreed.

Today I buried my mom.

While she died due to pneumonia and not vascular dementia, her death has changed how I will live. I realize that I can no longer be complacent that eating a good diet, and going to the gym several days a week is “enough.”

My dad is buried beside my mom and visiting his grave reminded me in a fresh way that his death was related to him having Alzheimer’s disease, and that he had type 2 diabetes for the last 40 years of his life. While my elevated blood sugar is a side-effect of the thyroid hormone medication that I have to take, taking Metformin and continuing to eat a low carb diet and exercising only makes sense. His death has changed how I will live.

Final Thoughts

Dietary and lifestyle changes are very important and can effectively put both type 2 diabetes and hypertension into remission, however when circumstances change, it is necessary to consider medication as an adjunct.

I have no choice but to be on thyroid medication in the same way that someone with type 1 diabetes has to take insulin. Given my lack of thyroid function, as well the side effects of taking thyroid hormones, I have chosen to let my parent’s deaths change the way I live. It may not be forever, and it may be — only time will tell.

In the meantime, I will continue to eat a low carb diet to control my blood sugar as best I can, and to go to the gym several times a week to lift weights and do resistance training.

Taking medication is not a “failure”. Dying an unnecessary or premature death like my two girlfriends did, is.

And if taking medication, in addition to eating a good diet and being active helps avoid, or significantly slow dementia, all the better.

To your good health,

Joy

You can follow me on:

Twitter: https://twitter.com/lchfRD

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July 7, 2023July 7, 2023

Success is All About “Showing Up”

Whether it’s achieving significant weight loss or recovering one’s health, I believe that success is all about “showing up”. As much as people would like to believe that eating certain foods or taking supplements will cause the “pounds to melt away” or for the symptoms of a health condition to “improve in just 6 weeks,” we know better. Success requires making a commitment, consistency and “showing up” for yourself — if not every time, most times.

One of the first posts I made when I started my personal weight-loss and health-recovery story (March 5, 2017 – March 4, 2019) was a video of me walking around a track. I was so overweight and out of shape that I could barely walk and talk at the same time. I was clearly out of breath! So why on earth did I post it? Why didn’t I wait until I lost the 55 pounds and the foot off my waist and then post my success pictures? I believe that people relate to the struggle of watching someone doing it and that watching them succeed no matter how long it takes, gives them hope that they can, too!

Here’s a clip from that video;

What I said in that video still rings true today, as I am continuing to work towards recovering from severe hypothyroidism;

“I want to encourage people that if they make a commitment to “do it” just do it! If you have to re-schedule other things to do it, just do it! It’s important. Exercise is a small component of this journey, but it is an important component. “

It’s about “showing up”.

By setting goals and by being intentional about following through, I went from looking like the photo on the left to being able to hike intermediate trails, and looking like the photo on the right. By “showing up” for myself in terms of my eating, I was able to put my extremely high blood pressure and type 2 diabetes into remission. But losing 55 pounds and a foot off my waist didn’t happen overnight. Even though I am a Dietitian and have helped many others achieve this in far less time, as my doctor told me a year ago, there indications that I probably had subclinical hypothyroidism for the past 10 years. In a sense, that I was able to accomplish the weight loss and for the most part maintain it, is evidence to the power of “showing up.”

Achieving and maintaining a healthy body weight has really about me making decisions on a consistent basis that move me towards that goal.

It’s not about being “perfect,” but about being consistent.

It’s about “showing up” for myself when I plan my meals. It’s about prioritizing foods that will provide satiety (not feeling hungry), and ensuring that the foods I eat with them provide me with the nutrients I need, while supporting my ongoing metabolic health.

Setbacks are About “Showing Up”

Weight loss and health recovery rarely occur in a straight line. There are any number of setbacks that can, and do occur. It is what we do with setbacks that determines whether we regain all the weight we lost and then some, or becomes as sick or sicker than we used to be.

It is still about “showing up”.

At my youngest son’s wedding last June, I was at my sickest but didn’t yet have a diagnosis. I could barely walk or get up from a chair because of the edema in my legs, and my tongue was so swollen that it was difficult to talk. You can read more about that in this first post in this new series.

What made it really hard for me was that I looked like I did when I was 55 pounds heavier, but I wasn’t. In short, I looked like a “failure.”

Recovery from Hypothyroidism is About “Showing Up”

I wrote a few posts about my recovery from hypothyroidism under “A Dietitian’s Journey (Part II)” but there were a lot of “silent” periods in between those posts, and since the last one where I simply had to “show up.”

I needed to continue to take my thyroid meds and have my thyroid hormones checked every few months. I needed to continue to work with my doctor to get my medication adjusted to a level that enabled me to feel well, and to accomplish what I needed to. I am very thankful to have an incredibly knowledgeable and supportive doctor, but the bottom line is that I need to consistently “show up.”

I needed to prepare my meds each evening for the following days dosages I take them in — and it didn’t matter if I was tired.

I had to continue to “show up” for myself when it came to making decisions as to which foods I will eat and those I choose not to because I have Hashimoto’s disease, which is an autoimmune condition.

I needed to continue to “show up” for myself to get tested for nutrients of importance in hypothyroidism and to supplement accordingly. Except for vitamin D3 and K2, and later magnesium, I never took supplements — choosing instead to get them by eating a range of real, whole foods. Being diagnosed with an autoimmune condition necessitated me changing my mind on this and consistently “showing up” for myself by consistently taking the supplements that I needed to.

Every day with hypothyroidism is about “showing up.”

Restoring Health is About “Showing Up”

A few weeks ago, after my new thyroid medications took effect and it became possible to think about regaining my mobility and muscle mass, the question was “how.”

My son who had been my “hiking buddy” recently married and moved out of province, and I was very aware that I wasn’t ready to re-join the ladies hiking group that I am a member of without regaining my strength. I needed a plan.

Someone in the local Facebook group posted about a program available and I knew that was exactly what I needed. It was close and would give me access to the weight-training facilities that I needed to rebuild my muscles, and the classes would provide me with some fun and aerobic exercise at the same time. They even had several pools where I could to rekindle my love of swimming, after I replaced my size 16 bathing suit.

In order to “show up” I had to first get what I needed.

By the end last weekend, I had a 3-month renewable membership to the fitness center, a one year parking pass, a new gym bag, and a bathing suit in my size. While I wondered if I would even remember how to swim as it had been at least 30 years since I last did, I was going to be focusing on doing what I needed to do to rebuild my muscle mass, and that was to “eat sufficient protein at each of my meals” and to “lift, push and pull heavy things often“.

I planned to go to the gym for the first time this past Wednesday, but make sure there was nothing slowing me down to “showing up”, my gym bag was already packed, and by the front door.

My gym socks and training shoes were pulled out, and my sweat band was draped on top of them.

My driver’s license, debit card and health card were already in a small wallet attached to my keys and was laying on top of my gym bag.

My water bottle was ready to go, and I had the coins needed for the lockers.

I had no excuses.

As I grabbed my bag and water bottle, I was “ready” to “show up” for myself. I needed to, because there was no one there to coax or encourage me. I had to be there for “me” and I was.

During my first workout, I learned how to use one of the types resistance machines and did three reps of ten with a 45 second rest in between each set on most of them — or as much as I could. I focused on having good form and didn’t try to do more than my body was able to do. This was the first workout, and I was already successful because I “showed up”. Everything else I did was moving me towards my goal of getting in good enough shape to hike again.

Yesterday, I woke up quite sore — especially my pecs. These are not muscles I use much, if at all. I had thought I might go swimming, but I was so sore I wasn’t sure that was such a good idea since it had been way too long since I last did it. I stretched my muscles and rested and prepared my gym bag to go on Friday.

When I awoke today, everything was prepared. The only thing I grabbed was a mask because of the smoke warning outside, and headed to the gym.

I had already determined I would do what I could, given I am new at it and still somewhat sore from Wednesday, and had a good workout. I was surprised that I could increase weight or reps on some machines but definitely did less on the pec press. That’s okay. I “showed up.”

Final Thoughts…

Whether it is losing significant weight, restoring one’s metabolic health, or rebuilding one’s physical strength after an illness, the first thing that is necessary is to make a commitment to “do it”.

Then, put the pieces in place that are required to be successful. If that is weight loss or health recovery, have a plan of how you are going to do it and who will oversee your progress. If it’s rebuilding your strength after an illness, find something that you want to do, that’s realistic for you to consistently do, and then get whatever is needed to get started.

Then, as I said in the video above, once you’ve made the commitment to “do it,” just do it.

If you are consistent in “showing up” for yourself on a regular basis, you will be successful in achieving your goals.

To your good health,

Joy

You can follow me on:

Twitter: https://twitter.com/lchfRD
Facebook: https://www.facebook.com/BetterByDesignNutrition/

July 6, 2023July 6, 2023

A Dietitian’s Journey (Part III) – the next phase

Thirteen months ago, I was diagnosed with an auto-immune condition and was the sickest I had been in many years. Thankfully, I am entering the next phase, where I hope to restore my health to what it was before my diagnosis.

At the time of my youngest son’s wedding on June 3, 2022, I was incredibly swollen all over, had pronounced joint pain and muscle aches, and significant edema in my legs and ankles — so much so, that I was wearing compression stockings all the time, even at the wedding.

The skin on my cheeks was dry and flaky 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 because my tongue was swollen so much that it seemed too large for my mouth, and the salivary glands underneath my tongue were swollen.

The debilitating fatigue made life very difficult.

The muscle weakness had progressed to the point where it was difficult for me to get up from a chair, or to get out of the car without pushing myself up with my hands. My eldest son was helping me get to and from the beach for the photos for the wedding and he thought it was me aging. Even my other two sons began to assume the same thing because the changes occurred too slowly for them to see that they only started a few months ago. I was thinking that I may have some form of “long-Covid,” but what got me starting to think that my symptoms may have had something to do with my thyroid was the very noticeable swelling in my face.

The phase immediately prior to diagnosis was the most difficult because on the occasion of my first son’s wedding, I looked like I did when I was 55 pounds heavier, but wasn’t. What was very stressful was not knowing why I was so sick.

LEFT: March 5, 2017, RIGHT: June 3, 2022 at my youngest son’s wedding.

The First Phase of Recovering from Hypothyroidism

Just as weight loss and metabolic health recovery rarely take place in a straight line, the same is true with recovering from hypothyroidism.

At the end of October 2022, my thyroid hormones had improved significantly taking two types of thyroid medication. My free T3 (the active thyroid hormone) was at 65.5% of the reference range, however my free T4 was only at 41.75%. Unfortunately, the medication adjustment we made at that time to “tweak things” made everything worse. By April, I was exhausted and cold, and found it very difficult to get through the day.

After having my thyroid hormones retested, it was evident why I felt awful, as my free T4 and free T3 had both dropped significantly.

Once again, my doctor adjusted my medication and thankfully my symptoms improved within a few weeks. Unfortunately, the less-than-optimal dose of thyroid hormones from January to April triggered another round of excessive hair shedding, but rather than “sweat the small stuff”, mid-June I opted for a new haircut which allowed my natural curls to fall where they may and it helped.

Since my condition is autoimmune, I continue to follow the specific dietary recommendations that I outlined here, as well as supplementing with the nutrients of importance in hypothyroidism while periodically having my serum nutrient levels tested. I also continue to eat a lower carb diet that is high in highly bioavailable protein to support my continued metabolic health.

A Dietitian’s Journey Continues – the next phase

While I was feeling much better for the past few weeks I was bemoaning the fact that I was not well enough to resume hiking. I know, “first world problems”. Now that the son that got into hiking with me a few years ago was married and had moved out of town, it was up to me to figure out a way to regain my strength.

Last week, someone on social media posted about a local fitness program and I thought to myself, “I am going to join that“! It was perfect. It was close and would give me access to the weight-training facilities that I needed to rebuild my muscles, as well as classes that would provide me with some fun and aerobic exercise at the same time. They even had several pools where I could to re-discover my age-old love of swimming! Realizing that the last bathing suit I owned was size 16 (from before I lost weight in 2017-2019), it was time to go shopping.

By the end of this past weekend, I already had a 3-month renewable fitness center membership, a one year parking pass, a new gym bag, and a bathing suit in my size. While I wondered to myself if I will even remember how to swim, but that was okay as I was determined to begin with “lifting, pushing and pulling heavy things often“. Along with eating sufficient protein intake over each of my meals, weights and resistance training was the most important for restoring my muscle mass and avoiding sarcopenia (muscle-loss) so common in older adults. I was determined NOT to become one of those frail older people and this program would get me there.

A Dietitian’s Journey Continues

I was planning to start at the gym this past Tuesday but ended up taking one of my sons and daughter-in-laws to the airport. When I woke up on Wednesday morning, I was ready to go. Not only was I ready, but I was excited to go, because for the first time in a year and a half to two years, it was possible. I was finally well enough again.

When I arrived at the fitness room, I asked the trainer to show me how to adjust the machines. She ushered me over to the cardio equipment, while encouraging me that this is where I should start. I replied to her that my first priority is to rebuild lost muscle mass and asked her to please show me how to use the resistance equipment, which she did. While cardio definitely has a place in my long-term goal of being able to hike again, lifting weights and doing resistance training will enable me to rebuild lost muscle, and strengthen joints and connective tissue as well as help with restoring my metabolism and mobilizing residual fat.

This is me after my first weight training session yesterday. I was sweaty and tired, but it felt amazing to finally be at this next phase of my journey one I have waited for as patiently as possible.

I hope that a Dietitian’s Journey – Part III encourages others who are recovering from Hashimoto’s as well as other types of auto-immune disorders.

If you would like more information about how I can support you in your health journey, please reach out to me through the Contact Me form on the tab above.

To your good health,

Joy

You can follow me on:

Twitter: https://twitter.com/lchfRD
Facebook: https://www.facebook.com/BetterByDesignNutrition/

October 31, 2022August 1, 2024

To Hell and Back – recovering from hypothyroidism (a Dietitian’s Journey)

Last Monday, I went to the lab for updated blood work, including a thyroid hormone panel, additional thyroid antibody tests, and an iron panel. I have moved past the frustration of there being no pricelist available for consumers who are self-paying for lab tests, and am now focusing on the lab test results, and the dietary changes that I need to make in light of those, as I am recovering from hypothyroidism.

DISCLAIMER: This article is 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.

The results came back late Monday afternoon and I met with my doctor to discuss them on Thursday, The good news is that based on calculation estimates converting the bovine Natural Desiccated Thyroid (NDT) medication that I had been taking, to a mixture of Synthroid® (a synthetic T4 medication) and Cytomel® (a synthetic T3 medication), my free T4 and free T3 are almost perfect. As my doctor said when we met, “between your research and my experience, we got this”.

This is a beautiful picture.

: TSH, fT4 and fT3 levels on T4/T3 thyroid hormone replacement medication

It shows, as my doctor and I had hoped, that my free T3 (the active thyroid hormone) is in the higher part of the reference range (65.5%); a level considered optimal by endocrinologists and thyroidologists who are well-versed in the use of the combination T4/T3 medications that I have been prescribed.

While my free T4 could be in the higher part of the range on the type of medication that I am taking, it may slightly lower because of the feedback from having sufficient free T3. That’s okay! I am feeling so much better, although it will take another year or more until I am really well again.

As expected, my TSH (Thyroid Stimulating Hormone, the pituitary hormone that tells the body how much thyroid hormone to make) is low because the amount of free T3 is optimal. This is a classic feedback loop where free T3 provides feedback on the pituitary gland, indicating that there isn’t a need to make more thyroid hormone. Think of it like a thermostat. When the room gets warm enough, there is feedback on the thermostat that no additional heat is required, and it turns it off until the room gets cold again.

Of importance, my TSH is not considered “suppressed” (TSH ≤0.03 mU/L) but “low” (TSH = 0.04-0.4 mU/liter) [1], so there is no increased risk of cardiovascular disease or bone fractures. Those with a “high” TSH (>4.0 mU/liter) — which was the level that I was at before being treated, and those with a “suppressed” TSH (≤0.03 mU/L) both have an increased risk of cardiovascular disease, abnormal heart rhythms and bone fractures. Those with “low” TSH (0.04-0.4 mU/liter) like I have, do not [1,2]. So more good news.

I have been diagnosed with Hashimoto’s disease (also known as Hashimoto’s thyroiditis) which is an autoimmune disease and diagnosis is based both on symptoms of hypothyroidism, along with the presence of thyroperoxidase antibodies (TPO-ab) and thyroglobulin antibodies (TG-ab) in the blood [3].

In many cases of hypothyroidism, it is these antibodies that contribute to the gradual disappearance of thyroid cells and the development of hypothyroidism. In my case, it was the trauma to the thyroid that resulted from surgery that I had 30 years ago to remove a benign tumour that was the major contributor to the eventual decrease in thyroid function.

Prior to being diagnosed, as you can read about here, I had all the classic symptoms of hypothyroidism, including body aches, joint pain, fatigue, feeling chilled, constipation, dry skin, hair loss, being forgetful, and even feeling depressed.

By the point I realized that these symptoms were not consistent with long-Covid (which is what I initially suspected) or aging (which my sons assumed), I had developed some of the symptoms of severe hypothyroidism [3], including difficulty with speech, significant water retention, and peripheral edema (swelling) of the ankles and face [3]. There are more photos of what I looked like when I was very sick here as well as photos from the beginning part of my recovery.

: To hell and back – 5 months of recovery from hypothyroidism

The blood tests confirm that I have both thyroperoxidase antibodies (TPO-Ab) and thyroglobulin antibodies (TG-Ab), which along with my symptoms, confirms my diagnosis of Hashimoto’s disease, but thankfully my blood test results indicate that neither are elevated.

Thyroperoxidase-Ab = 9 (<35 IU/mL)

Thyroglobulin Ab = 14 (<40 IU/mL)

While they are not elevated, they are present.

Gliadin and Transglutaminase

For many years I avoided gluten containing products because I thought I was gluten intolerant, although not celiac.

A year ago that I stumbled across some novel ingredients and had an idea to create low carb breads to provide dietary options for those with diabetes. My goal was to enable people who would not otherwise consider a low carbohydrate diet to be able to adopt one, for health reasons. I was mainly thinking of those from bread-centric cultures such as South East Asians (Indian) and Hispanics but in time, I developed many more types of low carb bread.

I was aware of the connection between high gluten consumption and leaky gut syndrome, but against that I weighed the serious morbidity and mortality linked to uncontrolled diabetes. I had come across many people who would rather stay diabetic, and potentially lose their toes or vision than give up bread and developing these breads seemed like the lesser of two evils.

Since being diagnosed with hypothyroidism that I had been developing over the previous 9 years (more about that here), I learned that the gliadin fraction of gluten structurally resembles transglutaminase. Transglutaminase is an enzyme that makes chemical bonds in the body, and while present in many organs, there are higher concentrations of transglutaminase in the thyroid.

In leaky gut syndrome, gliadin (and other substances) result in the gaps in between the cells of the intestinal wall to widen. This results in the immune system of the body reacting to food particles that are inside the intestine, that it normally would not see. It is thought that the immune system reacts to gliadin and creates antibodies to it, seeing it as a foreign invader. Since gliadin and transglutaminase have very similar structural properties, it is thought that in those with leaky gut syndrome, the immune system begins to attack the transglutaminase in the thyroid, and other tissues, contributing to the development of auto-immune conditions, including hypothyroidism.

A-1 Beta Casein and Gluten

A few years ago, I had leaky gut syndrome but it resolved with dietary changes, including avoiding gluten and A-1 beta casein dairy (you can read about what A-1 beta casein dairy is here). Naturally, as I had been working on recipe development for the low carb bread book, I had been eating gluten as I tested them. I also became more liberal in including dairy products from A1-beta casein cows, when I hadn’t used it in years. That started when there was severe flooding last year in Chilliwack last year due to heavy rains after the summer, and that was where my goat milk came from. Even once the roads were open again and the highways rebuilt, I never really went back to using goat milk, which is naturally A-2 beta casein. In the interest of an abundance of caution, I will go back to using dairy products from A-2 beta casein cows, or from goat or sheep milk (that are naturally A-2). Humans produce A-2 beta casein protein, and using milk from A-2 beta casein animals does not result in an immune response. It is not seen as “foreign.”

From what I’ve read and in discussing it with my doctor, it is likely that my hypothyroidism has been developing over the last 30 years, related to the surgery I had to remove a benign tumour. Further supporting that me becoming hypothyroid has been a long time in the making, I have had high-normal levels of TSH over the last 9 years — which happens to be a time period over which I was avoiding both gluten and A-1 dairy. Given that, I think it’s logical to conclude that my hypothyroidism is primarily related to the destruction of thyroid tissue in the invasive surgery connected to removal of the tumour. Further supporting this hypothesis, I currently have fairly low levels of TPO and TG antibodies, so I suspect they have begun developing fairly recently. Since a 2018 study reported that both TPO-antibodies and TG antibodies are decreased in hypothyroid patients following a gluten-free diet [4], it seems wise for me to go back to avoiding gluten, with the goal of lowering my TPO-antibodies and TG-antibodies down to as close to zero, as possible.

Cruciferous Vegetables

Cruciferous vegetables such as Brussels sprouts, broccoli, bok choy, cauliflower, cabbage, kale are known goitrogens. Goitrogens are naturally occurring substances that are thought to inhibit thyroid hormone production. The hydrolysis of a substance known as pro-goitrin that is found in cruciferous vegetables produces a substance known as goitrin, that is thought to interfere with thyroid hormone synthesis [5]. Since cooking cruciferous vegetables limits the effect on the thyroid function, and eating cruciferous vegetables have many health benefits, I will usually eat them cooked, but not in huge quantities. There are studies that found a worsening of hypothyroidism when people ate very large quantities of these (e.g. 1 – 1 ½ kg / day) so it is recommended that intake of these vegetables be kept relatively constant day to day, and limited to no more than 1-2 cup / day. I’ve decided that when I do eat them, to keep intake to the lower end of that range, and eat more non-cruciferous vegetables instead.

Iron Deficiency and Low Stomach Acid (hypochlorhydria)

I now know why I am still so tired. I asked my doctor to run an iron panel and the results show I have low iron. Previous results indicate my vitamin B12 are fine and I continue to supplement methylated folate and B12, so I know those are not a problem.

While my iron stores (ferritin) are okay, they are not optimal i.e., ferritin = 93 (15-247 ug/L) instead of >100ug/L.

My hematology panel is low-normal i.e. hemoglobin = 122 (115-155 g/L), hematocrit = 0.37* (0.35-0.45 L/L), MCV = 88 (82-98 fl), MCH = 29.5 (27.5-33.5 pg), MCHC = 334 (300-370 g/L)

My serum iron and iron saturation are very low i.e., serum iron = 11.9 (10.6-33.8 umol/L), iron saturation = 0.15 (0.13-0.50)

Low iron status is common with hypothyroidism, but it was surprising to me because I eat beef liver, or chicken livers every week, and also take a heme polysaccharide supplement (like Feramax®), so it may be due to an absorption problem.

Low stomach acid (hypochlorhydria) is common in hypothyroidism, and since low pH is needed for iron absorption, I have made dietary changes to improve that.

Final Thoughts…

I am very grateful that my doctor recognizes my knowledge as a clinician and is receptive to me advocating for my health. I am incredibly fortunate that he involves me in decisions regarding blood tests, as well as discussing medication types and dosages. As for the dietary changes and supplementation, he is content to let me handle that!

I hope that out of my experience that I have called “to hell and back” that I am able to help others better understand hypothyroid symptoms, diagnosis and treatment options so that they can discuss them with their doctor.

To your good health,

Joy

You can follow me on:

Twitter: https://twitter.com/lchfRD
Facebook: https://www.facebook.com/BetterByDesignNutrition/

October 27, 2022August 17, 2023

Blood Tests and Lab Frustrations – a Dietitian’s Journey

NOTICE: This my personal experience as a private consumer of lab services, and is not related to my profession as a Dietitian. This article is posted in a separate section of the web page titled “A Dietitian’s Journey” which is about my personal health journeys.

“A Dietitian’s Journey – Part I” was about my two year journey recovering from obesity, and poor metabolic health and “A Dietitian’s Journey-Part II” is my current personal journey recovering from hypothyroidism.

This article is written as a private consumer, which is why it is categorized as a personal account, and an editorial.

This past Monday, I went to the lab to have blood tests to measure my thyroid hormones, anti-thyroid antibodies, and an iron panel. When I had met with my doctor last week, I learned that I would need to pay for the free T3 test because the British Columbia guidelines and protocols for ordering thyroid tests state that a free T3 test is only covered to rule out suspected cases of hyperthyroidism [1]. As I wrote last Thursday, I was “more than willing to pay for a $9.35 test to have all the data.”

I think most people are aware that the healthcare system is economically stretched, and I certainly understand and accept the need to reduce costs. One way to do that is to restrict the ordering of laboratory tests to only medically justifiable circumstances, which makes good sense.

While I recognize that I am not objective in this situation, it would seem to me that when someone is on thyroid hormone replacement medication that includes both synthetic T4 and T3 hormones, that the expense of both a free T4 test and free T3 test should be covered by the provincial healthcare system as the cost is justifiable because the prescribing doctor needs to determine if the dosage of both synthetic hormones is adequate, but not too high.

As I said above, I knew last week that I would be paying for the free T3 test and was fine with that, but what I wasn’t prepared for was that I would be expected to pay three times the cost the government pays for the same test, and that there would no patient-price list available.

When I arrived at the lab on Monday, I was told that the free T3 test would cost $32.00. I replied that there must be a mistake, because the cost of the test is $9.35. I was informed that the government pays $9.35 for the free T3 test, but the patient-pay cost for the same test is $32.00. I explained to the person at the desk that I could understand the test costing more if there was a set-up fee for a stand-alone test, or for a separate blood draw, but this test was going to be run with others using the same blood draw. I was informed that $32.00 is the patient-pay cost of the free T3 test regardless of whether it is done with other tests, or by itself.

I asked if I could please see the price list with the patient-pay costs, and was told that there isn’t one. I was asked if I wanted to have the free T3 test period formed, and if I did that I would need to pay $32.00. What choice did I have? It was not as though I could go to one of the lab’s competitors, as this private lab company is the only one providing laboratory services in this city.

[NOTE (October 28, 2022: I have spoken to people in other provinces, and it appears from what people have said that the practice of diagnostic laboratories not disclosing patient-pay prices occurs in Manitoba, Ontario, and British Columbia. This practice may also occur in others provinces as well, but I don’t know. This article written as private consumer is about the practice of diagnostic labs not disclosing patient-pay prices to consumers, irrespective of which province the practice occurs in, or by what company.]

I paid the $32.00 for the test because I needed this information to know the effect of the medication on my thyroid hormones, and for my doctor to know whether a medication adjustment was needed. I had the disposable income to pay for it, but what about consumers who need a laboratory test to make health decisions or for their doctor to be able to, and who cannot afford that?

… and why are patient-pay clients charged 3 times as much as the government pays for the same test? Even if a private consumer was only requesting a stand-alone test and had to pay the ~$15 blood draw fee, this test would only cost $25, not $32.

After my appointment, I wrote the regional office of the lab company and asked “to have the patient-pay lab prices for British Columbia.” I heard back from a Client Service Advisor who told me that “We do not provide a list of what we charge to patients”.

I was flabbergasted.

I’ve always made the assumption that private businesses are required to post their prices, or at least make them available when asked.

As an individual consumer, what happened at the lab would be like going to the grocery store to buy food, but none of the items for sale have marked prices. You are required to pick out the things you need, but only find out at the cash register what the price is.

When you get to the cash, you ask the cashier about the prices, and she tells you there’s no price list, but she can give you the total cost at the end, and you can either pay, or put the items back. Needing the items, you pay what you are told, and take your receipt.

When you get home, you decide to write the head office and ask if they can send you a price list, and are told there IS one, but that they can’t give it to you.

[UPDATE October 29, 2022: The way things are currently set up, one has to make an appointment with the lab, go there, line up and give the person at the desk their requisition, and only then can find out how much the patient-pay part will cost.

After investing so much time, consumers are put in a position of having to make a decision on the spot — pay whatever is being asked, or leave without the test.

Consumers should be able to access the prices online and make a decision at their leisure, before investing so much time.]

I don’t know whether private businesses in Canada required to post their prices, or make them available when asked. I’ve always assumed they were, but I could be wrong. If there is a requirement to do so, do diagnostic labs have an exemption that enables them not to make their prices available to members of the public?

UPDATE October 28, 2022: I have since found out the same company provides a price list to allied health professionals so that they can provide laboratory assessment services to their clients, and if they choose they can mark up the cost in their own billing.

There are 2 versions of this test list available. They are identical except the one for British Columbia does not have the prices indicated, whereas the Ontario one does (see below).

I have also since found out that the company DOES have patient-pay price list that is titled “British Columbia Private Price List for Commonly Ordered Lab Tests” and is dated April 2021. It is marked “confidential” and as a result cannot be publicly shared. See #3, below.

1. The allied healthcare price list available in Ontario, dated November 2018 has the prices marked. See below.
2. The allied healthcare price list available in British Columbia, dated June 2020 does not have the prices marked.

Above is the allied health professional cost (November 2018) for an entire thyroid panel of 6 thyroid-related lab tests, including;

- - - - TSH
      - free T4
      - free T3
      - reverse T3
      - thyroperoxidase antibody (TPO)
      - anti-thyroglobin antibody (TG-ab)

Compared to what the BC government pays for the same tests (minus the reverhttp://from http://www.bccss.org/bcaplm-site/Documents/Programs/laboratory_services_schedule_of_fees.pdfse T3 which isn’t paid for by MSP) the above panel costs $80. Presumably naturopaths are charged prices similar to what MSP pays.

3. I have since found out that there IS a patient-pay price list and it is titled “British Columbia Private Price List for Commonly Ordered Lab Tests” and is dated April 2021.

The prices cannot be posted because the notice at the top of the price list reads;

“This is a confidential document. Please do not disclose our prices publicly except in conversations with your patients.”

Why is the private-pay price of lab tests a confidential document, and why can’t the prices of lab tests be disclosed to the public?

Are business in British Columbia required to disclosed their prices and if so, are diagnostic labs exempt from making their private-pay prices available to consumers?

I don’t know.

How many people would be willing to order dinner at a restaurant that did not post the price of its menu items until after they ordered?

My Thoughts on Patient-Pay Prices

I believe that as consumers, private-pay individuals have a right to have access to the prices for laboratory tests in advance, so that they can consider their decision to purchase, or not purchase these services. Consumers expect grocery stores and department stores to post their prices, and it is my personal opinion that privately owned laboratories from whom private consumers purchase services should be no different.

I also think private-pay individuals have a right to know why they are required to pay a premium price for the same services that the government gets for a third the cost, and allied healthcare professionals obtain for approximately half the cost.

This differential pricing for allied health professionals is a little like retailers selling supplements to practitioners at wholesale prices, while expecting the consumer to pay full price. Even car dealerships have “employee pricing” events so that the average consumer can take advantage of the same discounts provided to their employees, but at these diagnostic labs, consumers are unable to know in advance how much they will be paying for services before they arrive at the cash.

I believe that as private businesses, diagnostic laboratories are free to set their prices as they see fit but it would seem that (1) consumers should be able to know what those prices are in advance, and (2) that consumers should also know that they are paying a premium price for the same services, compared to what the government and allied health professionals are paying.

I am very grateful to live in a country where publicly funded medical care is available. I am thankful to have access to excellent diagnostic lab tests, and don’t even mind paying the same cost the government pays for tests that I want to have done. But as a private consumer, I believe the cost of services need to be available and that there needs to be transparency with regards to pricing discounts provided to others.

To your good health,

Joy

You can follow me on:

Twitter: https://twitter.com/lchfRD
Facebook: https://www.facebook.com/BetterByDesignNutrition/

References

BC Guidelines & Protocols Advisory Committee, Thyroid Function Testing in the Diagnosis and Monitoring of Thyroid Function Disorder, October 24, 2018

September 11, 2022August 1, 2024

What Does Success Looks Like Now – A Dietitian’s Journey

This article is the fourth entry in A Dietitian’s Journey and is about how I will measure success as I recover from hypothyroidism.

A Dietitian’s Journey – Part I

“A Dietitian’s Journey” (Part I) was my personal weight-loss and health-recovery journey that began on March 5, 2017 when I decided to make dietary and lifestyle changes so that I could reclaim my health. At that time, I was obese, had type 2 diabetes for the previous 8 years, and extremely high blood pressure.

Two years later, on March 5, 2019, I accomplished all but one of my goals, and the last one I achieved three months later. In all, I lost 55 pounds and more than a foot off my waist, and met the criteria for partial remission of type 2 diabetes, and remission of hypertension (high blood pressure).

To get an idea of what I looked like at the beginning and the end of that journey, there are two short videos on my Two Year Anniversary post that tell the story well. The first video was taken when I started and it is very apparent how obese I was, and how difficult it was for me to walk and talk at the same time. The second clip was taken when I completed my journey, and the difference is unmistakable.

A Dietitian’s Journey – recovery from hypothyroidism

Without much difficulty I maintained my health and my weight-loss from March 2019 until August 2020 but then I came down with Covid. This was at the very beginning of the pandemic and no one really knew what to expect in terms of symptoms. As you can read about in the first post in what has effectively become A Dietitian’s Journey Part II, (When a New Diagnosis is a Long Time Coming ) I had symptoms that both my doctor and I assumed were related to the virus, including muscle aches and joint pain, being exhausted, having ‘brain fog,’ headaches, and having the shivers.

Afterwards, I had to work very hard to regain my mobility. No one knew this wasn’t ‘normal.’

At first, I could barely walk up a flight of stairs. At the time, “success” was being able to walk around the block. Then I began taking several dietary supplements to help strengthen my immune system and in retrospect, the reason I felt better was likely due to the fact that these were all supplements involved in thyroid support. Success at the time was being able to walk around the man-made lake at the local park, but over the weeks and months of supplementing my diet and walking every weekend, success was being able to complete several medium difficulty hikes in the local mountains.

Unfortunately, in March of 2022, I came down with what my doctor assumed was Covid again. At first the symptoms were similar to what I experienced in August 2020, including muscle aches, joint pain, being exhausted, feeling cold all the time, with the only difference being that I didn’t have headaches. The symptoms persisted for several months and I was beginning to think that I had “long-Covid.” As most people did over the pandemic, I put on 20 pounds, but from March to May, I began to look as though I was putting on significant weight, but every time I got on the scale it indicated only a few pounds of difference. I had no idea what was going on.

The next symptom that I became aware of was swelling in my ankles. It wasn’t just a little bit of swelling, but significant enough that I needed to wear compression stockings all day.

At my youngest son’s wedding at the beginning of June, I looked like I did when I was 55 pounds heavier, but I wasn’t.

: LEFT: March 5, 2017, RIGHT: June 3, 2022

About three weeks after the wedding, I was diagnosed with hypothyroidism, and started taking desiccated thyroid. At first, I felt significantly better, and within several weeks, the edema in my legs began to subside.

There is still a fair amount of mucin accumulation in my legs, but as of this weekend, I can begin to grab a very small amount of flesh between my fingers. From what I have read it will take at least 6 months for this to resolve. You can read a referenced article about the skin symptoms associated with hypothyroidism here.

It is easy to see from the above photo that in less than 3 months on thyroid medication treatment, my face has lost its puffy, “inflated” look yet amidst the positive improvements of decreased edema and looking more like myself in some respects is the reality that I have lost ~1/2 of my hair due to telogen effluvium that often occurs with sustained hypothyroidism. You can read more different causes for hair loss here.

: Loss of half my hair in 3 months due to telogen effluvium.

Even though I have already been on thyroid replacement hormones for several months, it usually takes ~3-6 months for hair loss to stop and another 3-6 months for regrowth to be seen and 12-18 months to complete regrowth [3]. For someone like my who has lost half their hair, six months to a year to begin to see hair growth can seem like an eternity.

I recently changed medication forms from desiccated thyroid to a mixture of T4 medication (Synthroid®) and T3 medication (Cytomel®). The overall distribution of T4:T3 is about the same, but it is hoped that this mixture will result in more stable thyroid hormones day-to-day.

In six weeks I will have new blood tests to re-evaluate whether my levels have improved. At last check, my TSH was still high-normal (3.47 mU/L) when in most patients on thyroid hormone replacement the goal TSH level is between 0.5 to 2.5 mU/L [7]. My Free T4 = 14.0 pmol/L which is still in the lower end of the range (10.6-19.7 pmol/L) when it is considered optimal to be in the higher end of the range.

Metabolic Changes due to Hypothyroidism

It’s well known that people with hypothyroidism experience several clinical changes including different type of anemia, changes in how their heart functions, changes in blood pressure, blood sugar and cholesterol and weight gain due to a slower metabolism. My recent medical work up indicates that I was no different in this regard.

Different Types of Anemia

People with hypothyroidism have a decrease in red blood cells and experience different types of anemia, including the anemia of chronic disease. In addition, 10% of people with hypothyroidism develop pernicious anemia, which is associated with vitamin B12 and folate (folic acid). Iron deficient anemia is also common due to decreased stomach acid that results in decreased absorption of iron.

I was supplementing with B12 and folate and as a result have no signs of pernicious anemia, however my hematology panel indicates that I may have iron deficient anemia. An iron panel would be able to quantify this, however I am already taking heme iron supplements, along with vitamin C to support absorption.

Heart Changes

The slowing of metabolism associated with hypothyroidism also results in a decrease in cardiac (heart) output, which results in both slower heart rate and less ability for the heart to pump blood. This is what results in the unbearable fatigue.

High Blood Pressure

The decreased ability of the heart to pump leads to increased resistance in the blood vessels, which results in increased blood pressure (hypertension).

In those who had normal blood pressure previous to developing hypothyroidism, blood pressure can rise as high as 150/100 mmHg. Hypothyroidism may increase it further for those previously diagnosed with high blood pressure. While my blood pressure had been normal for more than a year, it gradually started increasing the last year, which in retrospect is the period of time over which I was exhibiting more and more symptoms of hypothyroidism. I have since been put back on medication for hypertension to protect my kidneys, which I hope to be able to get off of again within the next six month to a year, as my thyroid hormones normalize.

Weight Gain

Thyroid hormones act on every organ system in the body, but the thyroid is well-known for its role in energy metabolism. When someone has overt hypothyroidism, there is a slowing of metabolic processes, which results in symptoms such as fatigue, cold intolerance, constipation, and weight gain.

Weight gain is not only about diet or how much someone eats versus how much they burn off. It is also about the person’s metabolic rate, which can be impacted by several things, including decreased thyroid hormones. I gained 20 pounds over the pandemic (much of which overlaps with the period of time over which I was exhibiting more and more symptoms of hypothyroidism. I also gained 10 pounds from March to June which is mostly water weight, due to the mucin accumulation.

High Cholesterol

It has long been known that those with hypothyroidism have high total cholesterol, high low-density lipoproteins (LDL) [4], and high triglycerides (TG) [5], which results from a decrease in the rate of cholesterol metabolism. My doctor deliberately did not want to check these last time, because he knew they would be abnormal only as a result of the hypothyroidism. He plans to evaluate them once I have been stable on hormone replacement for several months.

So, What Does Success Look Like Now?

Just as I had a clear idea of what success looked like in my first A Dietitian’s Journey, I have a clear idea of what I would like success to look like this time, as I recover from my hypothyroid diagnosis.

Over the next year, this is what I want to accomplish;

1. weight same as March 5, 2019 (end of A Dietitian’s Journey, part I)
2. waist circumference same as March 5, 2019 (end of A Dietitian’s Journey, part I)
3. regrowth of my hair to same thickness as before clinical symptoms of hypothyroidism
4. restoration of iron deficient anemia:
  (a) normal ferritin 11-307 ug/L
  (b) iron 10.6-33.8 umol/L
  (c) TIBC 45–81 µmol/L
  (d) transferrin 2.00-4.00 g/L
5. Blood pressure ≤ 130/80 mmHg
6. Blood sugar:
  (a) non-diabetic range fasting blood glucose ≤ 5.5 mmol/L
  (b) non-diabetic range HbA1C ≤ 5.9 %
7. Thyroid Hormones:
  (a) optimal TSH= 0.5 to 2.5 mU/L
  (b) optimal Free T4 = 15-18 pmol/L (10.6-19.7 pmol/L)
8. Cholesterol:
  (a) LDL ≤ 1.5 mmol/L
  (b) TG ≤ 2.21 mmol/L

Final Thoughts…

While I don’t know if it will be possible to achieve all of these within the time frame or within adjustments to medication that my doctor will be willing to make, these are my goals. I believe that most of these are possible, and as far as they are within my control, this is what I would like to accomplish.

I have achieved a lot the last 3 months, but I am not “done.” I want the rest of my life back!

I want to be able to do the things that I enjoy, and to have the freedom to make plans in the evening knowing I will have the energy to follow through.

I think this is reasonable to ask and I will do everything I can to make this a reality.

A Dietitian’s Journey Part II continues…

To your good health,

Joy

You can follow me on:

Twitter: https://twitter.com/lchfRD
Facebook: https://www.facebook.com/BetterByDesignNutrition/

August 28, 2022July 5, 2023

Judging By Appearance – a Dietitian’s Journey

We form an opinion about someone’s appearance when we haven’t seen them in a while, or meet them for the first time. We do so unintentionally, but we judge by appearance. Sometimes the appearance of weight gain is not about diet but a diagnosis.

DISCLAIMER: (August 28, 2022): 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.

The photos below are both of me. On the left is what I looked like when I began my personal weight-loss and health-recovery journey on March 5, 2017. Over the following two years, I lost 55 pounds and 12 ½ inches off my waist following a low carb, and then a ketogenic diet. The process was slow — agonizingly slow and in retrospect, I now know why. The photo on the right is what I looked like two years later, maintaining my weight loss.

LEFT: March 5, 2017 RIGHT: December 2021 – after two years weight maintenance

Almost imperceptibly, my appearance began to change. I didn’t “see it” at the time, but I was aware that my waist circumference was different and that my clothes felt tighter. What I couldn’t understand was that I had only “gained” approximately five pounds.

The two photos below clearly show the subtle difference.

LEFT: Hiking March 5, 2021, RIGHT: Hiking March 5, 2022

The photo on the left was taken on the two-year anniversary of completion of my weight loss journey which lasted from March 5, 2017-March 5, 2019 as posted on my low carb web site. This entry in that journal which is titled From the Mountains Through the Valleys was written for my fifth anniversary, the day before the photo on the right.

The photo on the right was taken this past year in March, exactly one year after the photo on the left. The comparison is easy because I was wearing the same clothes. While my weight was only approximately five pounds greater than on the left, it is clear to see that my face was puffier, as were my legs. I remember getting dressed that morning and wondering why all my hiking clothes felt so tight. I also vividly remember how difficult the hike was that day — and it was a simple one with very little elevation. My legs felt heavy, and it was hard to walk up even the gentlest of inclines.

Despite having both vaccines in April 2021 and July 2021, a few days later I came down with what my doctor and I presumed was my second case of Covid-19.

I had Covid the first time in August 2020 and wrote about it in the journey entry titled, To Covid and Back). In retrospect, I think the ‘post-viral arthritis’ I experienced afterwards may have been linked to my thyroid’s response to the virus (documented in the literature). In that post, I wrote about recovering from Covid the first time;

“By the end of August (after Covid) it was difficult for me to even walk up (or down!) a flight of stairs. This both shocked and scared me.

I began to go for walks — even though it was very hard. At first they were literally just around the block, but I kept at it. One of my young adult sons who lives with me kept encouraging me to walk, and would sometimes go with me. As my legs became stronger, walks turned into short inadvertent hikes’ and I discovered I really liked being out in the woods, even though it remained very hard to step up onto rocks, or step down from them. I dug out the wood hiking staff that I brought with me when I moved from California and put it into service., invested in some hiking boots and other essentials’. As I said in the previous article, my hiking stick — along with my fuchsia rain gear has become somewhat of an identifier— but the truth is, without the hiking stick, I could not have possibly begun to hike.

My first breakthrough was in late November, when I did my 4th real hike which was 12 km around Buntzen Lake — which in terms of a few elevation gains was really beyond my capabilities. With frequent stops and lots of encouragement from my son, I did it. I had to. He couldn’t exactly carry me back to the car! That day I felt as though I had beaten the post Covid muscle weakness and was on my way back to health.”

When I got Covid again this past March, 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. The only difference was this time I did not have headaches. 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.

Fast forward to the beginning of June which was my youngest son’s wedding. I was so very unwell, but avoided talking about it as I did not want to detract from the very special occasion.

I was experiencing joint pain and muscle aches, and chills that would come and go. I would frequently 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. Most pronounced was the debilitating fatigue.

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 because my tongue seemed too large for my mouth, and the salivary glands underneath my tongue were swollen.

The muscle weakness had 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. My eldest son was helping me get to and from the beach for the photos, and out of the car. He thought it was me aging, and when I recently asked my other two sons, they assumed the same thing. 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!

The photo on the left, above is what I looked like when I began my weight-lost journey on March 5, 2017. The photo on the right is what I looked like June 3, 2022, at my youngest son’s wedding. I look more or less the same in both pictures, but with a fifty pound difference in weight.

I found out a few weeks later, I had hypothyroidism and was displaying many of the symptoms of myxedema. [I have written an article from a clinical perspective about the symptoms of hypothyroidism, which is posted here.]

While we do it unintentionally, we all judge by appearance, and “weight gain” is no different. If we see someone at one point in time, we form an opinion based on what we see. If anyone would have bumped into me three months ago, it would have been reasonable for them to assume that I had gained back all the weight I had lost, and then some. But that wasn’t the case.

But what causes the appearance of “weight gain,” without gaining significant amounts of weight?

As I explain in this recent clinical post about hypothyroidism, the “puffiness” is due to the accumulation of mucin under the skin. Mucin is a glycoprotein (a protein with a side chain of carbohydrate known as hyaluronic acid) that is naturally produced in the skin. Under normal circumstances, hyaluronic acid binds water to collagen and traps the water under the skin, keeping it looking moist and plump, In fact, hyaluronic acid is injected into the skin by dermatologists to make aging skin appear younger. The problem in hypothyroidism is that an excess of mucin accumulates under the skin, giving it a “tight, waxy” swollen texture. (I would describe it as feeling like an over-inflated balloon).

Below is a photo showing the change in appearance in my left leg from November 3, 2021 (left), to July 16, 2022 (middle), to August 26, 2022 (right).

The photo on the left was taken by me last November while I was doing some stretches. It was still on my phone in mid-July when I took a picture of the swelling in my lower legs and ankles caused by mucin accumulating in the skin. The photo on the right was taken this morning, and while much of the swelling has been reduced, I am still unable to pinch any skin on my legs due to the remaining mucin. I have read that it can take 6 – 8 months for this to resolve.

I want people to understand that the appearance of “weight gain” and “weight loss” in hypothyroidism is different than weight gain and weight loss due to dietary changes. The difference, however can be very subtle.

In my case, the appearance of “weight gain” occurred very slowly.

My appearance between March 5, 2021 and exactly a year later are almost indistinguishable. It is only in retrospect, that I can see the puffiness in my face and legs. At the time, I was puzzled why my clothes fit tighter when there was only a 5 pound difference in my weight, but beyond that I didn’t give it any thought.

Below is a composite photo to help illustrate how slowly my appearance changed at first, and how quickly it progressed as my thyroid disorder progressed. Look how rapidly my appearance changed in only three months, between March 5, 2022, and my son’s wedding on June 3, 2022!

[NOTE: As I’ve mentioned in all of my previous articles and posts about hypothyroidism, each person will present with different symptoms, and even those with the same symptoms may have very different appearance because of differences in their thyroid dysfunction. Keep in mind, these photos describe only my own experience.]

Below is a composite photo to illustrate how quickly the appearance on my my face has resolved after only two months of thyroid treatment.

An Expanded Perspective

My clinical practice changed 5 years ago when I came to understand what hyperinsulinemia was, and how early clinical signs of developing type 2 diabetes are evident as long as 20 years before diagnosis. In a similar way, my clinical practice is changing again now as the result of what I am learning about hypothyroidism.

Understanding the wide range of clinical and subclinical symptoms that people may have leads me to ask additional questions, to look at lab test results differently, and to ask for additional ones if it seems clinical warranted. While it is beyond the scope of practice of a Dietitian to diagnose any disease or to treat hypothyroidism, I am more aware of what to look and this helps me to refer people back to their doctor if I feel there may be a clinical concern.

Final Thoughts…

We form an opinion about someone’s appearance when we haven’t seen them in a while or when we meet them for the first time. While we do so unintentionally, in developing that opinion, we judge by appearance but sometimes the appearance of “weight gain” is not about diet, but about a diagnosis.

If anyone had seen me three months ago after not seeing me in a while, they might have assumed that I had gained back all the weight I had lost.

When we encounter someone who is overweight, we ought to bear in mind that don’t know where they are on their journey. We don’t know if they have metabolic issues related to glucose and insulin metabolism, are struggling with food addiction, or have an endocrine dysfunction, like hypothyroidism, or something else.

People seeing me now have no idea that less than three months ago I looked as I did on the left, and was very ill.

As much as it is natural for all of us to form an opinion, let’s try not to let that opinion become a judgement. Listening is a great way to find out more.

To your good health!

Joy

You can follow me on:

Twitter: https://twitter.com/lchfRD
Facebook: https://www.facebook.com/BetterByDesignNutrition/

August 18, 2022July 5, 2023

Measure of Health With a New Diagnosis – a Dietitian’s Journey

This article is the second entry in A Dietitian’s Journey Part II, which began with my recent diagnosis of hypothyroidism and is about how I now measure health due to my diagnosis.

NOTE: Articles posted under A Dietitian’s Journey are separate from referenced clinical articles (categorized as Science Made Simple articles) because these are about what happened to me (i.e., anecdotal) and based on my personal observation.

DISCLAIMER: The information in this post should not 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.

A Dietitian’s Journey – Part I

“A Dietitian’s Journey” was my personal weight-loss and health-recovery journey that began on March 5, 2017 when I decided to make dietary and lifestyle changes so that I could reclaim my health. At that time, I was obese, had type 2 diabetes for the previous 8 years, and extremely high blood pressure. I achieved my goal two years later, on March 5, 2019. In retrospect, I realize why it took a year longer than I anticipated. It is because I had high TSH levels, almost out of range. I had borderline subclinical hypothyroidism.

I believe that you can’t achieve a goal you don’t set“. In other words, I accomplished my health goals the last time because I set them. As the popular expression goes, “A goal without a plan is a wish.”

I wanted to achieve a normal body weight, be in remission of both type 2 diabetes and hypertension (high blood pressure).

Two years later, on March 5, 2019, I accomplished all but one of my goals, and the last one I achieve 3 months later. I lost:

- 55 pounds
- 12- 1/2 inches off my waist
- 3 -1/2 inches off my chest
- 6 -1/2 inches off my neck
- 4 inches off each arm
- 2- 1/2 inches off each thigh
- I met the criteria for partial remission of type 2 diabetes 3 months earlier
- my blood pressure still ranged between normal and pre-hypertension

If you want to get an idea of what I actually looked like at the beginning and at the end, there are two short videos on my Two Year Anniversary post that tell the story well. The first video was taken when I started my journey, and it is very apparent how obese I was, and how difficult it was for me to walk and talk at the same time. The second clip was taken when I completed my journey and the difference is unmistakable.

After recovering from Covid, I began hiking, and posted this encouraging “mountain top experience” post as my 5-year update. That was the pinnacle of recovering my heath.

Except for the ~20 pounds that I gained over the past 2 years (like most others during Covid), my weight has been stable. I continued to remain in partial remission of type 2 diabetes, and my blood pressure was normal until this past December. In retrospect, that is when my health began to change.

A Dietitian’s Journey – Part II

As told in last week’s post which was the first entry in Part II of A Dietitian’s Journey), things didn’t go as planned. Here is an excerpt from that post;

“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.”

When I saw my doctor last Friday, he thought that it was very likely I had hypothyroidism, but wanted to run some lab tests to rule out any other possibilities. I went to the lab last Monday morning, and my results came back late in the day. The ones I was waiting for showed exactly what both my doctor and I expected they would based on the supplements I had been taking prior to seeing him. What I didn’t expect was that my blood sugar would indicate that I was no longer in partial remission of type 2 diabetes. My blood pressure was higher than it had been in many years in his office, so I began taking it several times a day to see if it was “white coat syndrome” or genuinely high. Unfortunately, it was the latter. I knew what I had to do. I sent him a fax, reported my blood pressure readings, and asked if he thought it was warranted, that he call in a prescription for the same medication I was on 4 years ago.

Last week I did quite a bit of research to better understand how low thyroid hormones could contribute to my high blood sugar and high blood pressure — despite me continuing to eat a low carb diet. I wrote this referenced article about the metabolic changes that occur due to hypothyroidism that explains how thyroid hormones act on every organ system in the body, and as a result of hypothyroidism, there is a slowing of metabolism which results in weight gain, high cholesterol, high blood sugar and high blood pressure. Now it was making sense.

I knew one of the symptoms of hypothyroidism was “weight gain,” but I had no idea that it could occur over such a short time frame! Two months ago at my youngest son’s wedding, I looked like I did when I was 55 pounds heavier!

As described in last week’s post, I was very sick but it was devastating to look like I did! Today my appearance is almost back to normal.

Sometimes we have to look beyond what something looks like to the timeframe over which it occurred.

Following Up With my Doctor

Today I had my follow-up appointment with my doctor where we reviewed my lab test results from last week, and discussed next steps. My doctor requisitioned a free T4 test to see how my body is responding to the thyroid hormone treatment that he is overseeing. He also gave me a requisition for a Thyroid Peroxidase antibody (TPO) test to find out if I have Hashimoto’s disease or if my hypothyroidism is due to my past thyroid surgery for a benign tumour. This article from my long-standing dietetic practice explains what these are.

Since Hashimoto’s is an autoimmune disease, how I would choose to approach my diet if the results of that test are positive would be different than if it comes back negative.

I should have the results back tomorrow or Monday, but in the meantime, I am thinking about what I will do to recover my health once again, and how I will measure my success.

Once again, I am asking myself “what does success look like,” but this time it is in the context of this new diagnosis.

From what I have read, it is possible for my blood sugar and blood pressure to return to normal once the doctor adjusts my thyroid hormone replacement to its optimal dose, however for this goal to be “measurable” I need to have a better idea of how long this could take.

A Dietitian’s Journey continues…

To your good health,

Joy

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August 5, 2022July 5, 2023

When a New Diagnosis is a Long Time Coming

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).

If you suspect you may have hypothyroidism (or any other clinical condition), consult with your doctor, and “don’t try this at home.”

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