Putting the Pieces Together: A Tale of Autoimmunity

The horrible thing about shows like House and ER is that they give the impression that doctors care about "solving" your case and will put in the effort to diagnose and treat the underlying problem.  My experience is that doctors treat patients based on symptoms, medical history,and lab results. That sounds reasonable at first but often those things are a snapshot of the problem.  They don't dig deeper because if they treat the symptoms and the patient stops complaining, job done right?

Currently my doctors think I don't feel well because I don't sleep well enough and I'm depressed, despite the fact that I've assured them I sleep as well as I ever have and I don't feel depressed, just annoyed at them.  I've cried 3 times in the year since my diagnosis.  Every one of those times was in frustration over not being physically capable of living a normal life.  I refuse to be emotionally castrated by anti-depressants because some doctors think I shouldn't have any negative emotions about my chronic illness.  Besides that, depression is a symptom of hypothyroidism so even if I felt depressed I wouldn't be convinced that it's the cause and not another symptom.

When I was diagnosed with Papillary Carcinoma of the Thyroid (PCT), I had virtually none of the "established" risk factors for having it.  No one in my family had a history of thyroid cancer or thyroid disorders, and I'd never had any significant exposure to radiation.  Aside from being female and roughly in the right age range, the doctors didn't know why I would have it.

After my surgery they did a full biopsy and one of the things they found was that I was in the early stages of chronic thyroiditis.  In poor countries, chronic thyroiditis is usually caused by a lack of iodine, but because of iodized table salt, most people in affluent countries have thyroiditis due to autoimmune disorders.  My doctor never mentioned this during my post-op appointment, though I had read it in the pathology report.

It wasn't until I asked to be referred to another endocrinologist that I was told there was indeed thyroid autoimmune anti-bodies in my blood, so much so that they couldn't tell if I still had cancer.  When I tried to ask her more questions about it, she refused to answer, telling me that she didn't feel it was relevant. My experience is that the first step toward getting the worst care possible is letting doctors decide for you what is relevant.  I started doing my own research.

Hashimoto's and Papillary Carcinoma of the Thyroid 

It literally took me less than 30 seconds to find a 2012 study that showed that patients with Hashimoto's Thyroiditis (HT) are 16% more likely to have PCT, and 53.6% more likely to have Stage 4 disease (distant metastases).  Finally, there was at least the beginnings of an explanation of how I ended up with cancer and suddenly I feel so much more lucky to have had my cancer caught so early, a stage 1 tumor with minimal lymphatic invasion.

According to the study, the link between the two was first theorized in 1955, so even though this is a recent study, the link has been recognized for decades.  This was one of a number of studies I printed out for my doctor for our follow up appointment.  When I started talking to her about Hashimoto's she brought up it up to me as though it would surprise me at how much better informed she is than I am, and maybe I'd realize I was a dumb patient that should just go away and do as I'm told.  I handed her my printed copy of the study.  She looked crestfallen.

In this very limited respect, she is correct that the fact that I had Hashimoto's and then got PTC is not relevant because it already happened.  If I had been diagnosed with Hashimoto's at a younger age, a lot of problems, possibly even the cancer itself, could have been prevented, but hindsight doesn't cure cancer.

That doesn't make the disease irrelevant, though, for two very big reasons.  First, I still have Hashimoto's Thyroiditis even though I don't have a thyroid. My blood stream is still teaming with auto-immune antibodies and will be for years.  This means that the consequences of having treated a person with Hashimoto's with a thyroidectomy are still relevant.  Secondly, the Hashimoto's Thyroiditis is just another stepping stone. It explains the cancer.  What explains the Hashimoto's?

Hashimoto's Thyroiditis After a Thyroidectomy

It was not surprising to me in the least to know that very little (published) research has been done about the effects of thyroid autoimmune antibodies after a thyroidectomy.  Eventually as the cause for concern (thyroglobulin protein produced by thyroid cells) is no longer present, the antibodies will decrease in numbers, though as I understand it they'll never fully disappear.  I'm sure from the doctor's perspective, it's "job done" once the thyroid is gone.

Antibodies are what your immune system makes in response to perceived microbial invader.  Anytime your body gets sick, it tries to manufacture as many of the antibodies as it can.  The antibodies are specially designed to attack and destroy a particular invader.  In autoimmune disorders, the body thinks that normal, healthy tissue is an infection and tries to attack it.  This means that my body has been pumping out large doses of thyroid antibodies for years, perhaps my whole life.  Imagine your body thinking you were sick for 33 years.

What I did find was an interesting study that showed that patients with high levels of certain thyroid autoimmune antibodies (anti-TPO) had much worse symptoms even when their thyroid hormones tested as normal (euthyroid).  The link above is just to the abstract but I was able to read the whole study using my local libary's health database. This excerpt from the study essentially describes my symptoms:

In our female study collective, we could demonstrate that the following general symptoms were associated with higher anti-TPO levels: chronic fatigue, dry hair, whether patients became easily fatigued, dysphagia, chronic irritability, and chronic nervousness.

It goes on to conclude that the symptoms could be related to high levels of anti-TPO antibodies, not just hypothyroidism, and that patients with Hashimoto's Thyroiditis have worse symptoms.  I also found a paper that concluded that patients with HT have more complications after a thyroidectomy.

I tried to discuss with my doctor whether the symptoms I'm having now might be caused by the antibodies and whether that meant they would resolve themselves as the level of antibodies decreased. Rather than having what I hoped would be a productive dialog about thyroid autoimmune disorders, she shrugged, said "Maybe," and decline to look at the study I'd printed out.

I still feel that Hashimoto's may be relevant to the question of why I still feel unwell a year after I started treatment.  Unfortunately, my doctor didn't want to talk about it at all.  I don't get the antibody levels in my lab reports but I do know they are dropping so there's a chance that in a year or two they may dip low enough and these symptoms might "magically" resolve themselves.  If that is the case, the good news is that I need to do nothing but wait.  The bad news is that I might have another year or two of feeling unwell with no symptom relief.

It's ALL Related

Even if the thyroid antibodies aren't the cause of my current misery, it's important for another reason.  In 2005, after battling with doctors for several months, I was diagnosed with endometriosis after having symptoms for 9 years.  Endometriosis is a disease where tissue similar to the lining of the uterus grows outside the uterus, causing blood filled cysts that burst and cause massive scarring, pain, and infertility.

Although endometriosis is not considered an autoimmune disorder, it is strongly associated with several other autoimmune disorders, including autoimmune thyroiditis.  In an article published in May 2013, the authors wrote that the underlying causes for both diseases might be the same. This means that the endometriosis, thyroiditis, and cancer could all be the result of a single, underlying autoimmune disorder.  When I mentioned this to my doctor her response was, "So what?"

"So what", indeed.  I'd really hoped, again, that I'd be able to talk to her about autoimmunity and what research there was about treating the root cause of both diseases, as the authors of the 2013 article suggest.  In addition to being related to each other, both endometriosis and autoimmune thyroiditis are strongly correlated to a host of other autoimmune diseases which means that I am at greater risk for many other autoimmune disorders.  If they could treat the underlying cause it might reduce or eliminate the risk of my developing other disorders like Type 1 diabetes, rheumatoid arthritis, or fibromyalgia.

The authors of both the 2002 survey and the 2013 article suggest that autoimmune disorder screening should be performed for all women with endometriosis.  If my doctors had screened me in 2005, could they have found the thyroiditis and prevented the cancer?

What Does it Mean?

To be honest, I'm not entirely sure what all of this means.  I'm incredibly disappointed by my doctor's refusal to discuss the topic of thyroid autoimmune disease.  I'm worried that without treating the underlying disease, I'll continue to have problems for the rest of my life with these various, related diseases cropping up.  I'm hoping talking to my primary doctor and perhaps getting referred to an immunologist might provide more information and testing that might ease my mind.

What I do understand, and have read in other articles, is that if you have Hashimoto's Thyroiditis and pelvic pain, you should get screened for endometriosis.  If you have Hashimoto's, regardless you should get checked regularly for Papillary Thyroid Carcinoma.  If you have endometriosis, you should get checked for both.  Hindsight won't cure me, but maybe having written this it will save someone else the same trouble.

Recovery: 8 Months in 2 Words

It's been a little more than 8 months since I lasted wrote here. The one year anniversary of my surgery came and went and I am still sick, still not "cured". With the surgery and radiation behind me it seemed that all that was left was the work of getting well again. I can sum up the last 8 months of recovery in two words: It's hard. Though I was terrified of spending the night in a hospital and prepping for radiation was exhausting, I never expected these parts of my treatment to be the hard parts about having cancer.

Procedures are scary, but they happen to you, sometimes while you're not even conscious. Recovery is scary, too, but in a soul-grinding way where you have to experience every excruciating moment of your inability to function like a normal person: Cleaning the drain every time I shower because so much hair falls out, days where I can't keep food down, days where I can't stand up or walk so I crawl on the floor instead, taking pills that make me feel weak and ill because without them I'd die, going to sleep exhausted and waking up tired.

When I started this blog, shortly after my diagnosis, there were several reasons for writing. First, for myself to have a place to put down and process everything that was happening to me. When I can write it out as story, I can see it more objectively and less painfully. Second, was to have a way to keep those who cared but were too far away informed about my treatment. The last reason is that I wanted a record of my experience for anyone else who might be about to start the same journey. This last reason is the reason that I've decided to start writing again.

After my last blog post, my recovery seemed to be going well aside from repeated infections of my salivary glands which were damaged during the radiation treatment. In February, after having spent nine months doing treatments and trying to recover from them, I finally returned to work. Every day since then has been a struggle. I feel like I do nothing but work and sleep. The weekends are spent recovering from the weekdays. I no longer go grocery shopping with any regularity. My apartment is constantly dirty. If it weren't for my boyfriend I think things would be completely unmanageable. He gives me the motivation to do as much as I can and picks up the slack when I cannot do any more.

It scares me to say, but I'm running out of energy to do the work of getting well. Spurred by that fear, I've decided to step up my involvement in my recovery. I've started putting all those anatomy and pathology college courses to work, doing my own research into my condition and the treatments. I've begun the long and difficult task of fighting with my doctors to get the individualized care I need to complete my recovery.

I learned from the period of my life where I struggled with endometriosis that doctors don't want complex patients. They want easy solutions that they can cure with lifestyle changes or pills that will just make you go away. Most doctors only see the symptoms and therefore only want to treat the symptoms. They don't want to try another surgery, an experimental treatment plan, or anything that requires them to stretch themselves. In my experience, they will treat you as poorly as you let them.

I am exhausted now and I'm scared I've put this off too long, but I am also angry at the way my life is and the attitudes of my doctors so I'm hoping that will give me the energy to complete this fight. Upcoming posts will be about my research, the treatments I'm trying, and the struggles with my doctors to get the care I need to get well. I'm hoping by sharing this here, it will benefit others who are now on the recovery side of thyroid cancer treatment. Maybe it will also help those close to me to understand. Chronic illness is hard for everyone and I often feel like they think I should be better by now. They deserve an explanation of why I am not cured, and to see how I am trying to be. The road to recovery is not a six lane, smoothly paved highway. It's a dirt track through the wilderness with few signposts. This is the hard work of recovery, and this is how I will get well again.