Living Without a Thyroid

What I wish I had known before making this choice

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Image by author with help from — この狭い鳥籠の中

I’ve rewritten this post several times over the years. It’s hard for me to present both sides fairly. I’m completely biased because I’ve been through it, so keep that in mind. This initial post does NOT describe how to cope with the aftermath of this choice. Here I’m trying to provide someone who is considering this operation with the knowledge I wish I had before the surgery. If this post has a positive response, then I’ll publish a followup where I describe how my life changed as a result of the surgery.

Disclosure: I’m not a doctor. This isn’t a clinical survey of postoperative outcomes. I can’t tell you what you should do. I can only tell you my experience and share what I wish I had known prior to the procedure. If you are considering this procedure, gather as much information as you can before making a decision that has permanent consequences.

My journey has been long, and so is this post. I’ve broken it into three sections.

Section 1: In the absence of knowledge
What you are told
What you will likely think
My initial intuition
But why am I so tired?

Section 2: Hormones and you
What are hormones anyway?
I am not my hormones; I’m me
What changes if your hormones change?
The thyroid regulates your metabolism
Your metabolism regulates your vitality
Your vitality is the energy available to express yourself

Section 3: If the tumor doesn’t kill you…
But cancer might kill you
Conditional probability and Bayes’ theorem
I don’t think “likely” means what you think it means
This happens more often than you think
- Thyroid screening in South Korea
- Thymus irradiation in the United States
What I wish would change
The current state of affairs

Conclusion

Section 1: In the Absence of Knowledge

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patient and doctor — Syda Productions

If you are diagnosed with thyroid cancer, your doctors will likely recommend a partial or a full thyroidectomy. A thyroidectomy means having your thyroid removed. When discussing the consequences of such a surgery they will likely tell you that:

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pensive woman by Diego Cervo

You’ll read all of the literature they give you. All of it seems very reasonable. You are constantly reminded how “lucky” you are that surgeon So-and-so can fit you into her schedule, because she does so many of these a year.

I had my thyroid removed in 2014. There were additional resources on the internet, but when searching things like “thyroidectomy” and “surgery complications” and “recovery” and “after the surgery” and “scar,” I didn’t find any horror stories. I hadn’t yet realized that it wasn’t the surgery I should’ve been worrying about.

Today, the doctors are very good at performing this surgery. Almost no one younger than 40 has serious immediate complications from this procedure. It was very hard to find authoritative testimonies where anyone spoke about the surgery in a negative way. It’s perfectly reasonable to think that most people would have an initial positive impression.

Immediately after the procedure of course you’re going to feel grateful. If you could be cancer-free, why wouldn’t you feel positive about the outcome? At first, you’ll feel the same as you did before. After a year, the scar is almost invisible. Why wouldn’t you feel relieved? Maybe some people feel a little bit more tired, but it’s never immediately noticeable. I doubt very few people become convinced within the first six months that the surgery was a mistake. It seems like removing a thyroid with a tumor is like having surgery for an appendicitis or gallstones.

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Relieved manauremar

I had cancer, and now I don’t. People get surgeries all the time. My thyroid was physically enlarged prior to the surgery. Now, after the scar healed, I look in the mirror and my neck is smooth. The slight bulge that was there is now gone. I’m still the same person as I was before. When a person has their gallbladder or appendix removed, they don’t change as a person. A part of their body malfunctioned, and then that part was removed.

I think to myself that I was relatively lucky. What if I had cancer somewhere else in my body? What if I needed to get chemotherapy or radiation treatment? How would I cope with the fatigue? What would hair loss be like?

Asking yourself these kinds of unrelated questions is called “rationalization.” It’s a coping mechanism whereby someone frames what happened to themselves in a way that makes them feel better. Considering oneself to be “lucky” after having a thyroidectomy is a kind of false equivalence. You had a thyroid and now you don’t have a thyroid. Rather than comparing your present situation to some hypothetical nightmare, you’d be better off sticking with reality. Lots of things feel “lucky” compared to having cancer. Lots of things feel better than car accidents too. But when a stranger smashes a person's bumper in the parking lot, they don’t think, “gee, I’m really lucky I wasn’t in a fatal 10 car pileup on the freeway.” No one should care what life looks like compared to a theoretical nightmare. The relevant question a person should ask themselves is,

“what does life look like now given that I don’t have a thyroid?”

But why am I so tired?

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Man yawning — Betsie Van der Meer

Eventually, you start to think that something has changed. You begin to realize that your thyroid was not like your appendix. Although you were told that Synthroid is “identical … and performs all of the same functions (as your thyroid gland),” you start to have doubts.

As your health starts to diminish, you try to come up with various theories to find the culprit. The more time you spend doing the research that you should have done prior to your surgery, the more the resentment starts to build 😫😖😠.

Section 2: Hormones and You

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Lovheim cube of emotion

If I ask, “what makes you, you,” what would you say? When describing yourself, do you immediately start to list off your personality traits? Here is a typical bio someone might add to their online profile:

“A fun-loving person with a good sense of self and a positive nature. I’m warm and approachable. I quickly make new friends. People say I have a good sense of humor.”

Most people think about their personality as something intangible. The traits that make us unique don’t seem to be as physical as our hair color or our skin tone. Have you ever considered that a big part of your personality is composed of your behaviors and emotions? We often forget that our behaviors are largely driven by the chemicals in our body called hormones. Our emotional state is largely a reflection of five key neurotransmitters, which are also hormones. Our behaviors are hugely impacted by 50 different hormones which determine everything about us, such as:

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Tom Felton (Draco Malfoy) proving that time and hormones can change a man

I think this is a common misconception. Putting aside the matter of the human spirit, you are still a member of the animal kingdom. In the animal kingdom, hormones can transform a murderer into a mother. I highly recommend this video if you want to be convinced of the powerful influence our hormones can have on our behavior.

Amazingly, after the cat's oxytocin levels had returned to normal, she continued to care for the ducks as her own children. If the chemicals in your body change, so will your behaviors and emotions. Indeed, studies have shown that people with low oxytocin levels suffer from reduced empathy.

If your personality is what makes you unique, then consider that most of your personality is just an expression of the hormone levels within your body. For some, this is an uncomfortable thought. Our bodies can decay. Does this mean that our personalities, our very identities, can change also?

The truth is, our hormones determine how our bodies function. Our bodies determine how we feel about ourselves and others. How we feel determines how we behave and who we are at a fundamental level. The chemical processes happening right now within your body therefore play a major role in shaping your personality.

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hormone.org — thyroid

This gland secretes hormones that govern many of the metabolic functions in your body. These functions govern the way the body uses energy, consumes oxygen and produces heat. Thyroid hormones are like a conductor. These hormones are signals that bring your various organs into sync. Thyroid hormone orchestrates your heart, blood vessels, lungs and digestive system to produce energy. Thyroid disorders typically occur when this gland releases too many or too few thyroid hormones.

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Palo Alto Chamber Orchestra

Metabolism is your body’s ability to make biological energy. This is a complex process that begins in the fetus and continues until the day you die. A number of chemical processes allow your body to convert food into energy. As thyroid hormone in your blood increases, so also does your metabolism. If your metabolism decreases, your body slows down these chemical processes to conserve energy.

Metabolism regulates many aspects of our health, such as:

  • Body temperature
  • Heartbeat
  • Respiratory system and lung function
  • Ability to concentrate and stay alert
  • Digestive and bowel function

Hypothyroidism is a condition where your thyroid gland doesn’t produce enough thyroid hormone to maintain your body’s proper metabolic function. In the absence of proper thyroid levels, your body will work to conserve energy. Returning to the analogy of an orchestra, when a conductor is absent, the orchestra members will simply wait for his return. Members of the orchestra are not permitted to play at their own tempo; the conductor always governs them.

As your thyroid levels decrease, your body’s tempo slows. Your metabolism slows, and therefore your vitality decreases. As a side effect, your body temperature may decrease. Your body requires more time to rest. You may feel more fatigued. When exercising, you may experience shortness of breath. You may feel constipated and struggle to have normal bowel movements. You may find it difficult to concentrate. Most importantly, you may exhibit symptoms of depression, commonly associated with hypothyroidism.

“A vital person is someone whose aliveness and spirit are expressed not only in personal productivity and activity … such individuals often infectiously energize those with whom they come into contact.” — Peterson and Seligman

Everyone wants to experience vitality. Everyone wants to have the energy to live each moment with maximum enthusiasm. In many ways, our vitality is the most important attribute of our personality. If our vitality changes, then our ability to live our best life also changes. Unfortunately, our vitality is not an aspect of our personality under our direct control. It is dependent on our metabolism, which is dependent upon our hormone levels. This is why thyroid hormone plays a vital role in shaping our personality.

Section 3: If the Tumor Doesn’t Kill You…

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Battling cancer (Gandharvas studio)

Not all tumors or lumps are cancerous; benign tumors are not classified as being cancer because they do not spread to other parts of the body. When a tumor is still localized, doctors have multiple ways of determining if a tumor is malignant. Diagnosis requires doctors to image and monitor the tumor. This is usually done with ultrasound but can also be done with other imaging technologies. In addition, doctors will likely perform a biopsy. The most common type of biopsy prior to surgery is fine-needle aspiration (FNA). My FNA biopsy came back as indeterminate. I asked the right questions, but I wasn’t given the right answers. Today I’m providing you with both the questions I asked and the correct answers I never received.

QUESTIONS:

  • What are the chances that this tumor is a malignant cancer?
  • How should we monitor the tumor until we know for certain that it is malignant?

When it comes to the thyroid, the likelihood that any one tumor is malignant is surprisingly low. Here are some helpful facts:

QUICK NOTE: For the technical reader, I am assuming that the statement “twice as likely” is a prior probability and not a posterior probability. I don’t know for certain if this is the case. For more info see the note at the bottom.

We can now use Bayes’ theorem to determine the likelihood of having thyroid cancer given a suspicious biopsy. If you have never heard of Bayes’ theorem and you want to learn something valuable, don’t be put off by the math. There is a visual way for you to understand Bayes’ theorem without any math; the technique is explained in this video and this blog post. If you liked those this video is even better, but if you watch it you really should become a 3Blue1Brown Patreon supporter because without Grant’s explanation I wouldn’t have written this post.

Many people may have never heard of Bayes’ theorem which is understandable. But, without it, you can’t answer the question I asked my doctor. Bayes’ theorem is essential whenever you start with an initial probability of something being true and you update your probabilities as you gain more information. Conditional probability is essential for answering one simple question:

Given that my FNA was indeterminate, what is the probability that this tumor is cancerous?

Here is the formula:

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What I wanted to know:
P(cancer|indeterminate test) = My probability of having cancer given that my test was indeterminate.

What I now know:
An indeterminate test was twice as likely to indicate the tumor was cancer than it was to indicate the tumor was benign. This can be interpreted to mean that I should consider this result as increasing my odds that the tumor is cancerous by 66.6%. The odds that the test indicated the tumor was benign was half as likely, interpreted to mean that my expectation of a benign tumor went up by only 33.3%.
P(indeterminate test|cancer) = 66.6%
P(cancer) = 5%
P(indeterminate test) = 20%

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image by author

The probability that this tumor was malignant given my test results was 16.66%. The probability that the tumor was benign was 83.33%. In other words, I had a 1 in 6 chance that my tumor was cancerous. I asked them what the test result was. I was simply told that if my test didn’t show that the tumor was benign, then it was likely cancerous. This is equivalent to saying:

“Most of these tests come back as benign, so if your test is not benign it’s likely that you have cancer.”

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Credit: Princess Bride Movie

My advice to these doctors is that they had better not go to Vegas. If they do, they are likely going to lose all their money. Since when is a 1 in 6 chance a “high probability of occurring or being true.” Obviously, these doctors have never played dice.

I was not told the truth; I was not given the freedom to make an educated choice. The answers I was given were a fabrication. The doctors had no clue what the probability was or how to calculate it. They only knew what was printed in the material that they gave me. How could these doctors recommend surgery without understanding the potential for harm? How could they know what the potential for harm was if they could not understand the benefit of forgoing surgery? There are even thyroid nodule calculators on the internet. For the love of God, just use the tools at your disposal. You don’t have to know math to get this right, you only had to care.

The tumor was likely benign but I was told that it was likely malignant. I was denied my right to make an educated choice.

Surgery was recommended for any patient who did not receive a conclusive test proving that the tumor was benign. For them to not inform me of my options and the real risks associated with forgoing the surgery is a violation of their sacred oath to “do no harm.” Some might even say that their actions were borderline malpractice. They simply didn’t want to assume the liability of me getting cancer, which is why they told me it was best to get the surgery. I wasn’t a person to them; I was simply a potential liability.

I was not told the truth. I was not given the freedom to make an educated choice. I was harmed because the doctors never obtained my informed consent. Merely being able to perform this surgery without complications doesn’t mean that everyone should have their thyroid removed. Why would anyone have their thyroid removed if tests never indicated that it was cancerous? This is not just my opinion. To avoid unnecessary testing and treatment, the updated 2015 American Thyroid Association guidelines recommend against FNA testing of small thyroid nodules. The guidelines instead prescribe a monitoring regime of active surveillance.

The correct decision would have been to continue to monitor the tumor. Until the tests results demonstrated a greater than 50% chance that the tumor was malignant, there was no good reason to remove my thyroid.

The assertion that the tumor was likely cancerous was a lie. Over 11% of medical procedures in the US are unnecessary. 71% of physicians surveyed responded that they believe, “physicians were more likely to perform unnecessary procedures when they (personally) profit from them.

I misplaced my trust in the medical system. Patients must demand the information necessary for their informed consent; it is not given out freely. “Do no harm” has no meaning if everyone has a different definition of what “harm” is. Every patient is required to understand the consequences of any procedure. Without understanding the potential consequences, they can end up forever regretting their decision.

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The first patient treated with linear accelerator radiation therapy was a child (National Cancer Institute)

The below cases are two specific examples where medical policy went beyond public safety. These examples demonstrate that whenever doctors develop policies that are not based on accurate data, the result is always patient harm. It is perfectly normal for thyroid tissue to contain benign tumors known as nodules. Any assertion against this fact is not based on guidelines recommended by the American Thyroid Association.

The U.S. Preventive Services Task Force updated its guidelines for thyroid screening in May of 2017. The new guidelines recommended that doctors should not screen adults who don’t have signs or symptoms of thyroid cancer. The Duke health blog explains:

The availability of thyroid screening contributed to a 15-fold increase in the number of thyroid cancer cases in South Korea between 1993 and 2011. Despite the mass effort to screen more people, there was no improvement in the number of people dying from thyroid cancer … there is not enough evidence to suggest that widespread screening of adults without symptoms of thyroid cancer is beneficial.

This study demonstrated that there was measurable harm in screening. Screening resulted in overdiagnosis. Overdiagnosis resulted in unnecessary treatment which produced harmful outcomes. This practice was reevaluated once physicians realized that the number of people being diagnosed with thyroid cancer was 100 times higher than the number who had died of thyroid cancer.

In the 1920s and 30s, thousands of babies had their thymus irradiated. Physicians had been searching for a cause associated with a rise in sudden infant death syndrome (SIDS). Well-intentioned doctors believed that they were seeing cases of infants presenting signs of an “enlarged thymus.” To reduce the size of this gland, infants had their thymus irradiated.

The regular practice of thymic irradiation was finally halted in the 1940s, almost four decades after Friedländer irradiated the first patient […] More than 10,000 deaths caused by thyroid cancer resulted from this treatment.

The thymus of these children was not enlarged. It is now understood that the size of their thymus was normal. The anatomical models the doctors were relying on were abnormal. These models were designed based on previous autopsies which had been performed on infants and adults whose thymus was atrophied. These cadavers had smaller thymus glands because they belonged to people who lived in extreme poverty and under excessive stress. This was the first time the doctors had ever seen a thymus of normal size.

In the attempt to protect infants from an “enlarged thymus,” thousands of children were killed and thousands more developed thyroid cancer.

Doctors are men who prescribe (treatments) of which they know little, to cure diseases of which they know less, in human beings of whom they know nothing. Voltaire

What I wish would change

Patient consent in their treatment is derived from the information made available to the patients. Ultimately it is up to patients to determine what choice of treatment is best for them. Information is more than merely a tool to help doctors diagnose a problem, it should also be the means by which doctors gain the consent of the people whom they serve.

Educating patients is time-consuming and difficult. But, without this education, patients may have post-operative regret. Having a clear statistical analysis of the risks associated with different treatments is the right way to gain a patient’s consent. More than anything else this is the one thing I wish I had been given.

  • Conservative estimates are that approximately 150,000 thyroidectomies are performed per year in the United States. (source 1 & 2)
  • Around 47,000 people are diagnosed with thyroid cancer each year. (source)
  • “Until recently, thyroid cancer was the most quickly increasing cancer diagnosis in the United States. Researchers believe that part of the reason for the increase was that new, highly sensitive diagnostic tests led to increased detection of smaller cancers.” (source)
  • The difference in the number of reported cases varies by state:
    - Mississippi had 8.8 cases per 100,000 people.
    - New York had 18.4 cases per 100,000 people (more than 2x Mississippi).
  • The wide discrepancy of reported cases is correlated with overdiagnosis.

Conclusion

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Credit: South Park

Although this article doesn’t convey my post-operative experience, it does provide you with the facts you need to be better educated about this procedure. A thyroidectomy is irreversible. After this procedure, you will be prescribed levothyroxine (T4). This medicine will need to pass through your digestive system and then be assimilated and converted by your body into active thyroid hormone. Your vitality will then depend on T4 being metabolized into Triiodothyronine (T3) and then into Diiodothyronine (T2). If for whatever reason, your body converts levothyroxine T4 into reverse triiodothyronine (rT3), then you’re gonna have a bad day. If this article gets any positive feedback, then I’ll publish the rest. It took me years to write this, but the second half is already complete. I’ll publish it if there is any genuine interest in this topic.

Note: If you find factual inaccuracies in the links, then please contact those publications. If you find factual inaccuracies in my post, then please feel free to contribute to the discussion in the responses section. Remember, I am not a medical provider, and this is not medical advice. Always do your own research.

PS: If you like my writing then please feel free to read something I wrote that I passionately care about.

NOTE: These events transpired years ago and it is difficult to go back and speak to these doctors. Being completely honest I have an incomplete picture at best. I’m not clear if the doctors were providing me with a prior probability or a posterior probability when they told me that an indeterminate test was twice as likely an indication of cancer. It’s not entirely clear what P (indeterminant | cancer) should be. This is because it’s not entirely clear how likely different test results classify tumors as either malignant, benign, or indeterminate.

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Incentives architect for TandaPay

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