Yeah, So This Happened…

I have Hashimoto’s Disease.

In the simplest of explanations, your immune system attacks and damages your thyroid, which leads to really wack hypothyroidism, which basically turns you into a more tired, more achy, more chubby mess than plain ole hypothyroidism.

There, it’s out. Now I know why I’ve felt like ASS for the past 6 years, no matter how much synthetic thyroid hormone I ingested. Well, now we all know, and here’s my advice: If your doctor doesn’t listen to you, really, really listen to you, find one who will. I wish I had much sooner than I did.

Six years ago, I found myself completely exhausted. I chalked it up to the hours I was working at the time. I tried a million things, but never had the same amount of energy that I used to have. I finally went to my GP and ran through my symptoms and described the crippling fatigue I was dealing with. I had been spending time with Dr. Google, so I asked him if it could be my thyroid. He said probably not, that I was working too much and not taking care of myself, but he’d send me for the basic thyroid bloodwork anyway. His demeanor was a tad exasperated and annoyed. I should have severed that relationship right there and then.

My bloodwork came back that I was hypothyroid; I was relieved that now we knew what was wrong with me. I didn’t know that I should have had more thorough testing done, to look for antibodies. I took my doctor at face value. He did, after all, go to medical school. I started taking Levoxyl and started to feel a bit better. My next bloodwork revealed that my levels were in the acceptable range, so I stayed at that medication level for a while. When I started feeling really tired again and was putting on weight despite a really disciplined diet and exercise routine, I went back to him and asked that my levels be checked again. He asked me if I had been a fat child, since that would explain why I was getting chubby. When I replied no (with a really peeved look on my face), he seemed at a loss. He wrote me a script for a higher dose of Levoxyl and said to come back if I didn’t improve. I did improve, for a while, then the cycle just repeated itself. Go to the doctor, get humiliated, get new script.

When we moved to DC, my new doctor was one of the most well-respected internists in the area. I thought myself lucky to have such as wise man as a doctor, and relayed to him my thyroid woes. He ran the standard thyroid panel, said my levels were in the acceptable range, sighed, wrote me a new script for yet more Levoxyl and handed me some diet pamphlets, saying that if I followed the same diet as his diabetic patients, that the weight would fall off. It didn’t, and after repeating the same song and dance routine that I had experienced in Chicago, I gave up for a while.

And then I got really tired of being tired.

At the recommendation of a woman I met at an event, I booked an appointment with an integrative doctor who specializes in thyroid/endocrine problems. She and her medical group don’t take insurance, which allows them to spend as much time with patients and do as much testing as they want, without interference or directives from insurance companies. My first appointment this past Monday lasted almost three hours. It was the most thorough exam I’ve ever had, and she asked me (what felt like) a zillion questions to round out the eight pages of medical history that I had filled out.

She asked me if I had ever been tested for Hashimoto’s Disease and I said no, that both of my doctors had been dismissive when I asked them if I should be tested. The look on her face when I told her this was priceless, like she wanted to beat on someone priceless. She promised me that we’d get to the bottom of this and get me back on track. She then ran though the diet and lifestyle changes I’d have to make if I did end up having an autoimmune disease, of which the biggest change was going gluten-free (GF). Not to be trendy, but to help my body behave better and quit attacking itself.

One of the perk$ of going to a doctor who operate$ out$side of in$surance re$striction$ is some really great communication. Dr. S said to look for an email from her later in the week with my test results and marching orders. True to her word, an email showed up this past Friday afternoon directing me to log in to the patient portal to view my lab results and a note from my doctor.

I put off reading the email until almost bedtime. I was convinced that I did not have Hashimoto’s, absolutely convinced. I had it in my head that all we needed to do was get me more Levoxyl and I’d feel great. This was not to be. In no uncertain terms, my blood work revealed that I did indeed have Hashimoto’s. To add insult to injury, the way that I had been medicated was wrong and actually doing me harm. I needed my medication totally changed up, and, yes, no more gluten, ever. SHIT.

I told John…and then I got mad. John, being Mr. Positive, was all like now we know what’s wrong, that’s awesome. I was like, no it’s not awesome, someone should have tested me for this before now. I went to bed angry at my old doctors and angry at myself for not being a better advocate for myself. If I had treated my own health and questioned the doctors like I treat Lou Lou’s health, this probably would have been discovered before now. Dr. Google and I stayed up until the wee hours of the night. I went to sleep envisioning bunches of little Pac-men eating my thyroid gland. Nom, nom, nom.

On Saturday, I got myself into the acceptance mode. Told family, bought some books on being gluten-free, and cleaned the gluten out of the kitchen. I did make a gluten section in one cabinet for John, who said that he would try to give up a lot of gluten in a show of solidarity. Maybe he will let me smell his Triscuits if I play my cards right. Today (Sunday), I am in in the thank goodness it’s not worse, I can handle this, I can still drink red wine frame of mind. Hashimoto’s is totally deal-able; I got this.

I do have some things to get off my chest:

1. A big fuck you to the doctors who told me to diet more, exercise more, get more rest, and no you don’t need anything other than a standard thyroid panel. Let’s call it what it was: white-coat fat-shaming. Good thing I’m not the litigious sort.

2. I’d like to commend my former personal trainer (who, despite the fact that I saw him 3x a week and ran at least three miles each other day of the week we weren’t together) for not judging me, but praising my hard work in the gym and making me into a real fit bitch, even if I didn’t look like it.

3. Thanks go out to my friends and family, for being patient and kind, no matter how I acted because I felt like shit.

and 4. I am blessed with a supportive, encouraging husband who puts me and my well being ahead of everything else.

So, the lesson learned here?  Don’t repeat my mistakes. Never let a doctor dismiss your concerns. Either your doctor listens and helps you find the answers to your questions, or you walk and find one who will. If you have been diagnosed with hypothyroidism, insist on the full blown panel plus the tests that look for antibodies. Hashi’s (what a cute nickname!) is more common than you think. The longer Hashi’s isn’t treated right, the more damage it does, plus it can lead to other autoimmune disorders. Great.

Now, someone go drink a nice, big craft beer for me and tell me how good it tastes.

Ciao, gluten!