Thyroid Disease From the Perspective of a Patient

Imagine a disease that makes you gain (or lose!) tons of unexpected weight, lose your hair, feel nauseous all the time, and experience severe mood swings like bipolar disorder. And these are just some of the possible symptoms. Sounds like a great time, right? It’s not. This disease is Hashimoto’s Thyroiditis and it affects 14 million Americans, most of which are women, among whom you’ll find me.

What is Hashimoto’s Thyroiditis?

I’m not sure how common the name Hashimoto’s is for people who don’t have it and aren’t exposed to the topic on a regular basis, but in my family and among my friends, everyone has at least heard the name. I’m not shy about telling people about my condition, not because I am a hypochondriac who wants to rest on the laurels of my illness accomplishments, but honestly…because I’m embarrassed.

But before I get into that, let me explain what Hashimoto’s is. Some people mistakenly take the easy answer and say that Hashimoto’s is a condition in which the thyroid gland is underactive. While this may be (sort of) true, it’s not the only thing to expect if you get a Hashimoto’s diagnosis.

In fact, you may never experience this particular symptom, or it may be your main symptom. The disease manifests itself completely differently for everyone, which is why it’s often so hard to identify! The only people ever tested for it either a) have some kind of thyroid level issue, or b) have a family member who has already been diagnosed. I fell into the latter category when I was diagnosed 8 years ago after severe cases of anemia and depression.

Recently, a childhood friend of mine was diagnosed with Hashimoto’s and began to experience many of the things I’ve experienced, from symptoms to a lack of concern from doctors, and it made me see the importance of drawing attention to this oversight in the medical community. Her hair was falling out in handfuls and she was prescribed an antidepressant. She and I both suffered endlessly from GERD and I was referred to a psychiatrist. This is what we deal with! We talk nearly every day about the latest development in her condition and her dealings with medical professionals. I sometimes fear that it isn’t very encouraging for her to see that road I’m 8 years farther along on isn’t much easier than hers so early in the journey, but the more people I know who share my experiences, the more I want to help.

If you suffer from an autoimmune disease, you may recognize some of the signs and symptoms I mention here. You may also recognize some of the reactions from doctors. If you’ve ever been treated like your symptoms were unimportant or like you were saying something crazy by mentioning them, I want you to know that you’re not alone!

How thyroid disease is diagnosed

When thyroid disease is discovered, it is usually done with a blood test. More than the basic TSH, T3, and T4 have to be tested, however. The test required is a 6-panel test that also identifies thyroid antibodies, which are the indicator of thyroid disease.

Note: Many patients have reported that doctors are extremely reluctant to offer this test if the patient doesn’t have a family history, probably because the test is considered expensive. Check with your insurance company and opt for the 6-panel test if you can afford it. This is especially important if you have thyroid indicators in addition to inexplicable physical symptoms. If they counter your suggestion with an offer of antidepressants, push harder. Taking an antidepressant will not help if you really do have thyroid disease.

When I was first diagnosed, I had perfectly normal thyroid hormone levels and off the charts antibodies. The doctors assumed that my condition was Hashimoto’s because my mother’s doctors have assumed that is her diagnosis because her sister had a confirmed Hashimoto’s diagnosis (although her daughter had a confirmed Graves diagnosis). See, it’s all just a matter of guesswork. Doctors also assumed that I had Hashimoto’s because I was lacking some of the major symptoms of Graves disease, which is kind of, though not exactly, the flipside of Hashimoto’s.

Mayo Clinic gives a fancy description of the disease, explaining it as follows:

“Hashimoto’s disease is a condition in which your immune system attacks your thyroid, a small gland at the base of your neck below your Adam’s apple. The thyroid gland is part of your endocrine system, which produces hormones that coordinate many of your body’s functions. Inflammation from Hashimoto’s disease, also known as chronic lymphocytic thyroiditis, often leads to an underactive thyroid gland (hypothyroidism).”

The article, which details largely the same information that’s found on other popular medical websites, goes on to explain that the causes of the disease are not known. The suggested reasons that the article offers, things like genetic predisposition, hormones, excessive iodine, and radiation exposure, as well as age and gender, are interesting because current science has begun ruling out some of these as the causes. For me, this is just another example of the smoke and mirrors surrounding Hashimoto’s.

What are the symptoms of Hashimoto’s?

As for the symptoms of the disease? Well, these are endless. A few of these which I have experienced at some point in my life are:

  • Fatigue
  • Joint and muscle pain
  • Constipation
  • An inability to get warm
  • Hair loss and thinning or brittle hair
  • Irregular periods
  • Depression
  • Mood swings
  • Slowed heart rate

Most general practitioners don’t know or understand the condition and give patients a referral to an endocrinologist. Perhaps I’ve always been sent to the wrong endocrinologist, but my personal experience has shown me that even these experts don’t understand the disease. What they understand is how to prescribe thyroid hormone and how to check in with you every year or so to make sure you’re still alive and your thyroid levels are still normal. I’ve never had a doctor take interest in my particular symptoms, which go beyond the above list and also include “little known” concerns (which can still be found listed out neatly on a variety of medical websites) such as:

  • Mental fogginess
  • Forgetfulness
  • Dry skin
  • Non-specific aches and stiffness in muscles and joints
  • Decreased reflexes
  • Sleepiness

The mental fogginess one? Where you’re thinking about something and you get the concept but you literally cannot remember the words to express the thought so you just start crying because you can’t talk and everyone thinks you’re a crazy person? THE WORST!

The list goes on, but these are the primary symptoms I’ve personally observed in myself. While Graves is typically the condition that boasts such symptoms as extreme weight loss, anxiety, and panic attacks, because Hashimoto’s is characterized by a swing between hyper- and hypo- states, it’s possible to pick up symptoms from both diseases, depending on where in the cycle you are. And most people with Hashimoto’s swing like a pendulum between hyper- and hypo- states until they begin taking meds or have their thyroid gland removed.

When your body is practically registering on the Richter scale, how could you not experience mood swings?

Why am I embarrassed of my autoimmune disease?

Embarrassment is never something you should feel about a legitimate medical condition that you can’t control, but I feel it. The reasons are endless, but let me go ahead and jot down a few things I can think of right off the bat. I’m embarrassed because:

  • THIS IS THE BIGGEST ONE. The mental fogginess, or what it usually simply called “brain fog,” affects my conversations and my personal relationships. In high stress situations, I may try to express myself and I end up stammering away at someone, trying desperately to express myself but the words will not come out. Of course it usually ends in tears. It’s like there’s a barrier between my brain and my mouth and I can’t speak for a time. I feel like I sound senseless and pathetic, and based on the facial expressions of the people I’m talking to, I’m certain that I do. I’m a professional writer and a former teacher with, honestly, decent communication skills. The brain fog is truly horrifying because I begin to imagine it’s similar to the onset of Alzheimer’s or dementia, but if I panic while it’s happening, it becomes worse in the moment. To me, this is the one symptom that hurts me worse than all others.
  • I experience weird, unexpected symptoms sometimes, like sudden inexpressible emotions, usually because of the physical symptoms like sudden severe body pain, sudden weakness, sudden exhaustion, sudden dizziness…you get the idea. The key is “sudden.” I become embarrassed when this happens at a party or during a social event. While other people who have been diagnosed with autoimmune diseases say this is the case for them, most doctors look at you like you’ve lost your mind when you mention it. Their first response is to provide you with an antidepressant because, yes, sudden pain all over your body is extremely depressing, but an antidepressant doesn’t help the cause: the actual pain.
  • Doctors are always trying to treat me separately for health conditions that are actually related to thyroid disease. I have been treated for GERD, chronic sinus infections, anxiety, depression, anemia, B-12 deficiency, migraines, etc., and no doctor has voiced the suggestion that these conditions were related to my Hashimoto’s diagnosis. In this case, my embarrassment is more a feeling of being crazy. I have long suspected a connection between these concerns and the disease I’ve already been diagnosed with, so why won’t any medical professionals take that connection seriously? Hashimoto’s causes inflammation, which in turn causes most of the conditions.
  • The research is there, but the process of treating systemic inflammation is still largely experimental. (Fortunately, there are things we can do ourselves to counteract inflammation.)
  • People in my life think I’m “sickly.” I would say this applies to people who don’t know me very well or who only see me during those occasions where I have sudden symptom onset. But even in some cases, my friends and family misunderstand. I can’t tell you how many times someone has said to me “you’re always sick.” It’s a simple, offhand comment, but it hurts me deeply to hear it. I am embarrassed that people realize how often I feel sick because I try to keep it light and avoid mentioning my pain and my discomfort as much as possible. (I’m uncomfortable writing this extremely public post because I don’t want people to feel weird about my symptoms, but I want to put aside my embarrassment for the sake of the people who have similar experiences and want to know that they’re not crazy.)
  • I am an extremely health-conscious person! I am embarrassed when my body betrays me because I spend so much of my time thinking about what I’m eating, planning my next workout, and practicing mindfulness to offset depression and anxiety. When someone says “cheer up,” I feel embarrassed because they don’t know how far I’ve come, probably just in a single day.

After realizing that doctors weren’t going to take me seriously, I embarked on my own health journey, playing my own doctor in some cases. I realize that there are ethical reasons why patients should not make decisions without a doctor’s input, but when you’ve experienced the shrug and head shake over symptoms that are legitimate and real (for example, hypochondriacs can’t fake anemia and B-12 deficiency) you begin to see the benefits of setting off on your own.

Note: I don’t recommend or endorse a self-care approach that abandons medical knowledge, but I am doing it safely and with professional guidance, where needed. There will be more about my methods in future posts.

Thyroid disease misdiagnosed as depression

I mentioned my struggles with depression and anxiety and I’ve admittedly been able to alleviate some of those concerns through diet, exercise, and mindfulness techniques. There are times when mindfulness doesn’t work, where the panic attack comes on and nothing seems able to offset it or where the pain moves through the body at such a rapid rate that there’s nothing to do but crumble into despair. (Eventually, I hope to master a technique to replace despair. I had this experience not too long ago and it knocked me right off my feet, literally and figuratively. It caused an emotional breakdown because I don’t know what to do when I’m doing everything technically right with diet, exercise, and meditation, and yet the symptoms persist!)

I started reading Kelly Brogan’s book A Mind of Your Own, so I was already beginning to feel frustrations over the way that the field of psychology indiscriminately prescribes medication instead of looking at the root causes. Again, here is a case of doctors (medical or not) simply ignoring the cause-and-effect of conditions. And let me emphasize, sometimes these are conditions a person already has been diagnosed with and the doctors are completely ignoring the connection between the diagnosis and the symptoms. I’ll get back to Kelly Brogan’s book in another post, but for now, here’s my initial reaction to this research. While studying this subject, I found another post making the rounds on social media, and it’s click-baity title, “4 Conditions That Resemble Depression But Aren’t,” got my attention right away.

The article starts out great, focusing on a lot of the same concerns that Kelly Brogan references in her book. I particularly appreciate the section that explains the misdiagnosis of standalone depression (emphasis added by me): “Mental illness is often difficult to diagnose, particularly because there are few psychological tests to help clinicians make a diagnosis. Diabetes is diagnosed through blood tests, cancer is diagnosed through biopsies and medical imaging, but mental illness is largely diagnosed through checklists of self-reported symptoms.”

Let me clarify this. People are telling their medical and psychological doctors that they are feeling listless, depressed, sad, unmotivated, sexually disinterested, etc., and they are being prescribed medication for depression because of these symptoms. Very few other medical conditions would be treated this way. Doctors want a diagnosis before treating a patient with the medication designed for an illness. (For example, a doctor wouldn’t prescribe thyroid hormone to a patient who had gained a ton of weight unless a diagnostic blood test had been performed to confirm that need!)

On the flipside, I tell my doctor that I’m feeling listless and depressed, anxious, bloated, sick to my stomach, weak, etc., and I am being prescribed medication for depression too! (And not taking it, but that’s a different story.) But I already have a legitimate medical condition that can cause these exact symptoms, so why am I being treated with antidepressants? Who wouldn’t be depressed about these symptoms? That doesn’t mean that these symptoms are depression!

When I started reading this article, I really thought it was going to go the direction of Kelly Brogan’s statement (my emphasis added again): “I believe depression is a meaningful symptom of a biological mismatch with our lifestyles–we eat poorly, harbor too much stress, lack sufficient physical movement, deprive ourselves of natural sunlight, expose ourselves to environmental toxins, and take too many drugs. I believe that inflammation is the language the body speaks, expressing imbalance, inviting change. We usually suppress these symptoms with medication. That, to me, is like turning off the smoke alarm when your house is on fire.”

That makes sense! But this article goes a completely different direction.

I was particularly unimpressed with the section of this article that detailed the way that hypothyroidism is often misdiagnosed as depression. Although this is true, the author still gets a lot wrong on this front. The description explains that the thyroid gland failing to release sufficient hormones causes the patient to experience “fatigue, diminished concentration, and low mood” which are obviously symptoms of depression, Other symptoms these sufferers may also notice are sensitivity to cold temperatures, dry skin, hair loss, and a hoarse voice. So far, accurate. It’s the conclusion.

“Hypothyroidism can be properly diagnosed through a simple blood test, and treatment requires only one pill a day.”

Behold, the great lie of the medical field.

I have talked with so many medical professionals who truly believe this, and so many autoimmune disease patients who have been told that this is what they should expect from their care: a single daily pill and then everything will be fine. Unfortunately an autoimmune disease is not the same thing as an underactive thyroid, just because they have that particular symptom in common. Meanwhile any number of the 14 million people who have Hashimoto’s may read this article and wonder why their symptoms persist in spite of the “single daily pill.”

It’s outrageous, isn’t it? I think so.

Now what?

This is just an overview. I have so much more that I want to cover about what I’m doing, how I’m treating myself, and what my results have been. First and most importantly, I wanted to make sure that everyone had a good, foundational understanding about what Hashimoto’s is, from the perspective of a patient.

I’m still embarrassed. No one wants to feel crazy or exhibit craziness, especially when, inside, they feel completely normal. I don’t like who I am with Hashimoto’s, I hate that self, and since I made the decision to transcend my disease, I will continue to fight to do so. Whether deciding and achieving are exactly the same thing remains to be seen, but this is my journey toward health and happiness, and I will not give up.

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3 Thoughts.

  1. I've talked with many hashimotos' patients, but I can't remember anyone who expressed their thyroid disorders as eloquently as you did – especially the part about embarrassment, which most patients would rather not talk about! I agree with most of your post. I do think that doctors are trying to help their patients. Unfortunately, simply prescribing someone synthroid may not fix all of their symptoms or get to the real problem. I know some patients for whom it did, but unfortunately, for the many that I've talked to, it does not.

    How has your thyroid support process been since this post?

    • Thanks for the reply! I have found a new doctor who supports my lifestyle approach to treatment and that has made a world of difference. I firmly believe that those of us who suffer from chronic disease need to take our treatment into our own hands. I would no longer call what I experience "suffering." I barely notice the condition anymore!

  2. Pingback: Opening Up the Dialogue About Processed vs. Real Food - Truly Alive

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