Grief Upon Diagnosis: Uncovering Hashimoto’s Thyroiditis

Wednesday, I was diagnosed with a new autoimmune disease.  I have Hashimoto’s thyroiditis.

There is such a tremendous feeling of grief associated with a diagnosis like this.  Even though it means that I finally have answers, even though it explains everything I’ve gone through since puberty, even though it means that there’s a medication that I can take that will make me feel better, even though I am completely armed with all of the information I need to manage it and make the best health decisions, there’s a part of this that makes me feel angry and bitter, like it’s my fault, like my world will never be the same again…. I’m grieving.

 

I wrote about the emotional struggles of autoimmune disease on page 283 in The Paleo Approach.  This isn’t my first rodeo, so to speak.  It’s certainly not the first time I’ve felt the complex combination of emotions that comes with diagnosis.  But, this time, it seems bigger.  I think because I have finally identified my first autoimmune disease.

While this may be a new diagnosis, I’m certain that it’s not a new illness.  In fact, I believe that I have suffered from Hashimoto’s thyroiditis since I hit puberty at 10 years old.  In fact, I believe that Hasthimoto’s thyroiditis may be the reason why I hit puberty at 10 years old.

The autoimmune diseases that I’ve been diagnosed with before now (lichen planus, scalp psoriasis, and arthritis) are all typical secondary autoimmune diseases, meaning they usually accompany celiac disease or ulcerative colitis or Hashimoto’s thyroiditis, etc.  I’ve wondered for the last couple of years (since I started researching autoimmune disease in depth to write The Paleo Approach) if I do have an undiagnosed primary autoimmune condition.  Now I know that I do.  And it makes my last 30 years of life make a lot more sense.

I will never know for sure, but I believe being ill with mono for 6 months when I was 7 years old was the beginning.  It makes some sense since Epstein Barr infection is known to dramatically increase the risk of several autoimmune diseases, including Hashimoto’s thyroiditis.

I was teased for being chubby in elementary school, although I was just a sturdily built, tall child.  It wasn’t until early middle school that I really started gaining weight.  I always thought it was my fault.  But, when I look back at the type of kid I was, I was highly active, walking a mile and a half to and from the bus stop each day, riding my bike around the neighborhood in the evenings and for hours on the weekends, going for frequent family walks and hikes, and taking swimming lessons.  My diet growing up may not have been gluten-free or Paleo, but my mom believed in butter, our dairy was grass-fed, our eggs came from a local farm, and we ate almost entirely whole unprocessed foods, including fish we caught ourselves fresh from the ocean and vegetables we grew in our garden.  I thought that the reason why I was gaining weight, when the other kids around me weren’t, was because of the occasional ice cream sandwich purchased from the school canteen.  I thought it was because if I found a quarter on the ground, I’d use it to buy gummy bears from the 5-cent bin at the corner store on my way home.  I thought it was because I wasn’t perfect.  I never realized just how much it didn’t add up.

I didn’t know that having bowel movements 2 or 3 times per week wasn’t normal.  I didn’t know that having a heavy period that lasted 7 days wasn’t normal. My skin was always dry, so I used heavy duty moisturizers.  My scalp flaked so badly I always wore my hair up.  I didn’t know that the amount of hair in my brush and clogging the drain wasn’t normal. My nails were thin and brittle, but I bit them.  I didn’t know that how tired I felt wasn’t normal.   I was a teenager who willingly went to bed at 8pm, who slept on the school bus both to and from school, who would rather sleep than do all the bad but fun-looking stuff my friends were doing… and I had no idea that that was a symptom. I didn’t know that my moodiness and tendency toward mild depression wasn’t normal.  And heck, I was a moody, tired teenager–no one around me knew that wasn’t normal either.  I stopped growing at 10-years old, but I was 5’6″ having until then always been the tallest girl in my class, so this was never flagged as something abnormal.   It got increasingly difficult for me to participate in PE or be active as I got into my later teens.  I thought it was my weight–by that time I was certainly overweight but only borderline obese–not realizing that the muscle fatigue and joint aches could be due to something else.  I had nearly every symptom of early hypothyroidism, and I didn’t even know that I should complain about these things. Seriously, what teenager wants to tell their doctor or even their friends about galactorrhea!?!  I just assumed that’s what every girl went through…

I blamed everything on my weight, and blamed myself for my weight. I developed coping strategies to deal with the other symptoms.  I learned to push through fatigue, and work hard despite it.  I started drinking coffee daily at 14 years old.  And once I had income from babysitting and eventually a part-time job, I started keeping myself awake in the evenings to get my homework done with popcorn and m&m’s.  I went on many diets throughout my teen years and they never worked, which left me feeling defeated, feeling that it didn’t matter what I ate, which eventually evolved into binge eating disorder.

In my late teens and early twenties, birth control exaggerated all of my symptoms.  My chronic constipation was so bad that I underwent a series of uncomfortable diagnostic tests that eventually led to the label of Irritable Bowel Syndrome. In grad school, my doctor told me I probably had hypothyroidism when I complained about weight gain, fatigue and depression after a major health crisis.  I remember sitting in my landlady’s office and telling her about how every symptom of the disease matched what I was experiencing. But the tests (TSH and T4) came back normal (albeit just barely) and my doctor never pursued it further.  This was also the time that I developed my secondary autoimmune disease, lichen planus (read more about this part of my journey here and here), severe acid reflux, asthma, and allergies.

As a postdoctoral research fellow, I again went to the doctor complaining of weight gain and fatigue.  My T4 was just bellow the normal range and my TSH was normal, so my doctor told me “we’ll watch it”, which we didn’t. This is when I was diagnosed with early arthritis and scalp psoriasis.  This is when I started having tendonitis, and numbness in my fingers diagnosed as probable carpal tunnel.   I had much more severe depression, and anxiety attacks.  I had frequent migraines.  I was clumsy.  I did nothing but work and sleep and eat. This was when I was my heaviest, close to 300 pounds.

What brought me to Paleo was the fact that even though I was successfully losing weight on a low-carb diet, I was getting sicker and sicker.  When I first went Paleo, my energy sky rocketed, my digestion normalized, my asthma and allergies diminished, my acid reflux went away, my aches and pains went away, and things started coming together for the first time in a long time.  When I went AIP, my skin cleared and I reached my lowest weight ever as an adult.

Even while Paleo, I had coping strategies.  I discovered that using Morrocco Methods International haircare products help my scalp not to flake and my hair to be thick and healthy.  I started using Primal Life Organics and Tallow Balm for my skin.  I continued to rely on caffeine, and even when I gave up coffee for 15 months, I continued to drink 2 or 3 pots of black tea a day.  Yes, pots.  And I slept 9-10 hours per day.  I used a Squatty Potty and took Magnesium Glycinate which was sufficient to deal with the chronic constipation.  I found solutions for what seemed like isolated issues, nothing worth mentioning to a doctor, nothing worth complaining about.

And then I agreed to write a book, which became two books.  If I ever needed reinforcement of the importance of lifestyle in managing autoimmune disease, the health crash I suffered a year ago was it (you would think that the act of researching and writing Chapters 3 and 6 would have been enough, smh).   I had thought that I would bounce back once The Paleo Approach went to the printers, but I didn’t.  So, I sought the amazing expertise of a local functional medicine doctor (Dr. Flowers), the first doctor to ever run a complete thyroid panel on me.  At that time, I once again suspected it was my thyroid, but, my thyroid panel came back normal (albeit just barely).

A spring and summer of going to bed early, working out, and keeping my diet clean healed my adrenals.  But as my adrenal glands started producing cortisol again, other symptoms started to manifest.  My hair started falling out in the summer.  My weight started creeping up again in the fall.  And after The Paleo View Book Tour in November, everything seemed to fall apart.  I had no energy and went from infection to infection to infection.  When I wrote my New Year’s Resolution post, I assumed that I had thrown myself back into adrenal fatigue.  But the opposite was true: the stress and lack of sleep of travel combined with now functional adrenal glands sent my cortisol skyrocketing.  The high cortisol suppressed my thyroid and finally unmasked what has probably been there all along:  Hashimoto’s thyroiditis.

I do appreciate the irony, that writing an encyclopedic tome to empower the autoimmune disease patient to recover their health, caused my own health to deteriorate to the point of adrenal burnout and autoimmune flare, which enabled me to (finally) be diagnosed with Hashimoto’s thyroiditis.   I don’t take it back though. And I don’t regret for one second writing those books or taking on any of the projects that I am now working on.

A common conversation I have at book signings is with people frustrated that they don’t yet have a diagnosis.  They know that something is wrong, they’ve undergone many tests, they feel terrible, but they don’t have a name for their disease.  A devastating statistic that I shared on page 13 in The Paleo Approach:  45% of people later diagnosed with serious autoimmune diseases are labeled as hypochondriacs in the early stages of their autoimmune diseases.  Many autoimmune diseases are impossible to diagnose until they’ve progressed to a point of severity that it’s obvious. I was not labeled as a hypochondriac, instead I was labeled as a fat person clearly doing something wrong to have gotten there.   I tell people that changing diet and lifestyle to regulate the immune system and stop the progression of their disease means they don’t let it progress to that point of severity where diagnosis is possible–and that’s a good thing.  I tell people that there’s victory in not knowing.  I don’t even know if I thought this applied to me before, but it certainly doesn’t now.  I know.  And it simultaneously feels like a failure and a huge relief.

In many ways, I feel absolved from guilt.  Being an overweight teenager was not my fault.  It was the disease.  That size 26 wedding dress wasn’t my fault.  It was the disease.   And look how strong I am.  I lost 120 pounds with undiagnosed Hashimoto’s thyroiditis!  I graduated with a PhD in medical biophysics and have become a New York Times bestselling author with Hashimoto’s thyroiditis.  I have become an inspiration and roll model for hundreds of thousands of people because I conquered a disease I didn’t even know I had.

And, in many ways, Hashimoto’s made me who I am.  Being bullied as a kid and teenager, my struggles with weight and health, the coping strategies that allow me to persevere and work my tail off despite exhaustion and pain, my desperate need for answers and my inherent nerdiness when it comes to the level of detail I want to understand everything in…. all of these things together have allowed me to become the Go To Resource for millions of people struggling with autoimmune disease and other chronic health problems (as my husband jokes “I know this great book about autoimmune disease called The Paleo Approach“, lol).  Hashi’s is in many ways the root of who I am.  I have known life with it for almost as long as I have known life, even if I didn’t know its name until Wednesday.

I am sharing all this to validate your grief.  Grief is normal.  The mixed emotions that comes with diagnosis is normal.  It’s allowed to feel big, even with all the silver linings.  And remember that there are many silver linings.

I have been grieving this diagnosis, while also realizing the strength and optimism that comes with this knowledge.  There are few people in the world who understand the intricate details of what’s happening in my body better than I do.  There are few people with more knowledge about diet and lifestyle for regulating the immune system, healing the body, and supporting thyroid function.  (And for those of you going through this too, I’ve shared all of this knowledge in The Paleo Approach.)  I know which medications to take, which supplements, which healing foods.  I know what to watch for.  The symptoms I have been suffering, even including very poor sleep quality, are already starting to subside with my new regimen.

Even though I grieve, I rejoice in finding the missing piece to my puzzle.

---

List of Hashimoto’s thyroiditis symptoms from http://www.nytimes.com/health/guides/disease/chronic-thyroiditis-hashimotos-disease/symptoms.html

I loved this letter from Thyroid Sexy  https://www.facebook.com/notes/thyroid-sexy/i-am-hashimotos-disease-a-letter-for-patients-family-and-friends/353693224649639