Month: October 2022

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.

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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.

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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.

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.

 

 

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

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Copyright ©2022 BetterByDesign Nutrition Ltd.

LEGAL NOTICE: The contents of this blog, including text, images and cited statistics as well as all other material contained here (the ”content”) are for information purposes only.  The content is not intended to be a substitute for professional advice, medical diagnosis and/or treatment and is not suitable for self-administration without the knowledge of your physician and regular monitoring by your physician. Do not disregard medical advice and always consult your physician with any questions you may have regarding a medical condition or before implementing anything  you have read or heard in our content.

 

 

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.

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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?

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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. 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.

 

Copyright ©2022 BetterByDesign Nutrition Ltd.

LEGAL NOTICE: The contents of this blog, including text, images and cited statistics as well as all other material contained here (the ”content”) are for information purposes only.  The content is not intended to be a substitute for professional advice, medical diagnosis and/or treatment and is not suitable for self-administration without the knowledge of your physician and regular monitoring by your physician. Do not disregard medical advice and always consult your physician with any questions you may have regarding a medical condition or before implementing anything  you have read or heard in our content.