Living with an (almost) Invisible Disease
By: Damsel In De-Stress
Tags: Thyroid Problems, Hormonal Imbalance, Womens Health, Autoimmune Disease, Medical Diagnosis

Photo by Edgar Hernández on Unsplash

Part one of an on-going struggle

It’s been almost three years since I was diagnosed with Graves disease. You’d think I’d be used to it by now. You’d think I would have read every internet article or academic study and be armed with enough knowledge to go forth and live my life effectively however cautiously. Truth is, I read a lot in the beginning, but not deeply enough to really understand what was going on inside my body.

I am NOT an armchair physician or a Web MD addict. Having said that, I’ll admit to joining a Facebook group or three when I initially learned of my diagnosis. I think we all want to somehow connect with someone hundreds of miles away- if only to say (in your head of course)”Oh my God! Me too!” Seriously though- I just wanted to

confirm that people living with this disease were normal, functioning humans that were thriving in their day to day lives despite the inconvenience of this illness confirm that I was having a lot of the same symptoms as others with this diagnosis and I was actually a sane person relate to someone-anyone

In the year that I was diagnosed, I blew up my life. I destroyed a relationship that I thought was pretty close to perfect by cheating with an ex and then deciding that I actually did want to run away from aforementioned established life and pursue a relationship with this person. I hurt my family, created enormous upheaval and distrust with my children and put my whole being in jeopardy. I quit my job, I tried halfheartedly to kill myself and I lost nearly everyone and everything that mattered to me. Long story short.

Don’t misunderstand me. This disease did not give me a license to fuck up. I don’t deserve any sympathy you might have for me. I do mean to say that I believe it was a contributing factor to behavior that was extremely out of character. In fact, according to my endocrinologist, it is possible that I was heading toward a “thyroid storm”.

I know. The first time I heard that phrase I thought it was a layman term for some medical jargon or long ass word that was impossible to pronounce. But no- that is just the proper term used to describe an emergency case of hyperthyroidism that has gone untreated and can sometimes even be fatal. Without going into too many medical facts and figures, (unless T3 and T4 levels turn you on) it means that my thyroid is overproducing these two hormones which regulate a whole bunch of other shit in my body that now doesn’t function properly.

So here is where things get tricky and where this story actually sort of began. I went to the gynecologist for my annual. I mentioned that I had been having all sorts of problems with my period- both missed periods and extra long cycles. I was tired a lot. I was having some heart racing and some headaches, depression, and all of this I had attributed to my being an overweight smoker with a stressful job. She decided to do some blood work as I was convinced that I was pre-menopausal at only 38. She said- “Did you know you have a thyroid problem?”- as if it was something that I just failed to mention or would have certainly known was causing all of my health issues.

She referred me to my first endocrinologist who diagnosed me with Graves. It’s important to note a few things here: Graves is actually an autoimmune disease that causes hyperthyroidism- along with a slew of other goodies which we will get to in a minute. Not everyone with hyperthyroidism has Graves. I could go into the hallmarks of the disease and the guy it’s named after- but really this story is about me and my experience.

Imagine my surprise after receiving the results of my blood tests and learning that I had HYPERthyroidism. Didn’t people with overactive thyroid lose weight? Remember I was an overweight smoker. While weight loss does happen frequently, this is a pretty common misconception about hyperthyroidism. Couple that with the fact that Graves disease is a whole separate issue (that was most likely genetic) and it’s no surprise that I was a little confused.

I began a daily dose of meds that included a beta blocker to help regulate my heart. I was being treated with the understanding that a few things would probably happen in the next year-

I would go into “remission” and possibly even swing the other way into HYPOthyroidism because your thyroid is a really difficult thing to fucking control. If/when that happened, I would need to begin taking different meds to try and get my thyroid functioning again. It was really a see saw that my doc would try to balance for me. If my numbers didn’t stabilize in the next year, then I should decide whether or not to undergo an invasive and risky surgery to remove my thyroid altogether- followed by synthetic hormones I’ll have to take forever to simulate my actual thyroid. OR I can drink a radioactive iodine solution, which is potent enough that I shouldn’t be around my dogs or kids for a couple days, in hopes that it just destroys my thyroid function within. Sometimes it takes more than one time for this to work.

If these sound a little scary to you- understand that two days before this diagnosis, I was told I have several tumors in each of my breasts that the doctors were 80% sure were benign. Did you know that Fibroadenoma tumors are more likely to appear in women with thyroid disease? Thyroid disorders can cause milk production, cyst development and they disrupt ovulation.

Here’s a little aside for any men that may be reading this. First let me say thanks, even though I suspect you are still reading because you have a wife and you are desperate to find the source of her crazy- but let me not be judgy. Graves disease is more common in women, but not unheard of in men. Maybe you are looking for answers as well. Nevertheless, if it is the former, please don’t discount your SO’s hormones. Don’t make fun of her “time of the month” or her hot flashes or her sudden weight gain(or loss). Hormones regulate almost every single system in the body and problems with these levels are not imaginary or something to be ignored.

*******************************************************************

So, I am adjusting to taking the meds and trying to deal with the real life consequences of my crazy. I’m trying not to freak out thinking I might lose my tits. I’m trying to eat better and educate myself and stop smoking and exercise more and all of the good girl things you do when you’re not even 40 yet and you realize that your life is finite after all. Then my endocrinologist moves to New York.

Part two of this story is upcoming.