Ack! I’m so nervous about my upcoming appointment with an endocrinologist to test for autoimmune thyroid disease that I’ve decided to exercise my anxiety on my keyboard. To be clear, I’m not afraid that I will be told that I have thyroid disease. I’m afraid I’ll be told I don’t.
Before going on about me, it is worth noting that autoimmune diseases are on the rise internationally. From type 1 diabetes to lupus to multiple sclerosis (and 97 other ways the body has developed to attack itself), the number of people affected is doubling, tripling and even quadrupling in industrialized nations around the world. In the United States, an estimated 23.5 million people suffer from some form of autoimmune disease and, interestingly, women account for almost 80% of cases. Along that line, we of the fairer sex are twice as likely to develop multiple sclerosis, four times as likely to develop scleroderma and seven times as likely to develop Graves’ Disease – what I ‘hope’ I have.
I think anyone dealing with a suspected autoimmune disease can identify with feeling desperate to be told they are truly sick. Symptoms are so diverse and affect so many different parts of the body that it is easy to feel like you are going crazy – or dying. Beyond that, some symptoms (particularly those related to concentration, mood and energy) are invisible and difficult to convince others – particularly some more chauvinistic doctors – to take seriously or look at holistically. I found it such a challenge, in fact, that I ultimately turned to Dr. Internet as my primary diagnostician. Indeed, if I had continued to listen to my GP instead of digging for information myself, I would be going to see a psychiatrist tomorrow instead of an endocrinologist.
Since this is the first and probably the last time I will ever write about this, I’ll go ahead and talk about my symptoms. And just in case anyone else struggling with the same things ever actually reads this diary, I’ll go into a little bit of detail.
THINGS GOING ON INSIDE: I DON’T FEEL ‘RIGHT’
• I’m tired. All the time. It doesn’t matter if I sleep a lot or a little. I rarely feel anything but tired. In meetings, even those I am leading, my main focus is on staying awake.
• My ability to concentrate (particularly on work) has dwindled alarmingly. I’ve gone from decades of highly focused productivity to staring mindlessly at a blank page for hours and even days. It doesn't help that my eyes often decide that they can't be bothered to focus.
• I often feel spacey and light headed and my IQ seems to have dropped dramatically. Sure, I still know that 2+2=4 but figuring out which direction I’m headed when looking at a map? Lolz! Not lately.
• Noise – I can’t stand it. The dog barking, happy 12 year old boys talking too loud, the buzz of a faulty television cable… all have become like electric shocks. The nerves all over my body feel raw and I get jumpy, confused and explosively angry.
• I’ve lost interest in the things that used to bring me joy. Microwave dinners have replaced home cooked meals and I haven’t read a book in almost eight months.
• My emotions swing from happy to sad to nothing at all. Even when dealing with apathy, however, I have anxiety attacks (although I prefer to think of them as ‘adrenalin surges’). I stopped worrying about whether they could be heart issues or strokes ages ago. I simply accept they’re happening and do my best to ride them out.
• Despite having no energy, I often feel restless. I’ll jump up from my comfy chair and go stand in another room. Because I have no reason to be in the other room, I then return to my comfy chair.
• Raging irritability, thy name is me.
• Vertigo, I’ve started getting it all the time. Normally mundane tasks like walking the dog or picking up groceries become Fear Factor adventures when coupled with sudden whooshing disorientation and rubber legs.
• I can’t bear heat. My internal thermostat spikes 10 to 20 times a day. When outside, I feel like my clothes are melting onto my skin because a fire is burning under my epidermis. When others are talking about that ‘delightful cool breeze’ and how they think they need a jacket, I’m mopping sweat from my brow. Expose me to hot outside temperatures for long enough and my speech will start slurring. By the time I get home, all I can do is pass out for hours.
PHYSICAL: IT’S DEFINITELY NOT ALL IN MY HEAD
Polyuria: I have to pee, a LOT. Between 20 and 35 times a day. It has been going on for years and has become so routine that I barely notice anymore. I’ve been to GPs and urologists. I’ve been tested repeatedly for the usual suspects - infections (nope) and diabetes (nope). I’ve had ultrasounds and even a bladder biopsy. I’ve been condescended to, smirked at and even told that the problem is bottled water (huh???).
Early menopause: In my late 30s/very early 40s, my periods suddenly started to get very light and short. Then they virtually stopped. I’m now 44 and have had fewer than 12 periods in the last three years. Four of those happened in a six week span of time. After the bladder biopsy during my inaugural episode of polyuria, I started spotting and went to see an ob-gyn (something I don’t do often enough). He didn’t know what the problem was but causally commented that my uterine walls were “paper thin”. He clearly wasn’t concerned and I really had to wee so the conversation ended there. Writing everything off to early menopause, I never followed up.
Vitiligo: Michael Jackson suffered from vitiligo. My friends (and complete strangers) have often commented that through his various cosmetic surgeries, Michael Jackson seemed to be trying to look like me. Now I have developed vitiligo and my friends are joking that I am trying to look like him. Ha ha. So funny!
Vitiligo, an autoimmune disease in its own right, kills off the skin’s melanin cells, creating rather sizable pigment-free splotches around the body. It started slow, a few splotches on my torso that I forgot about as soon as I put my shirt on. Now it has spread to my hands and face. You might think this would bother me but it doesn’t. Being fair skinned to begin with, the de-pigmented zones aren’t as starkly noticeable on me as they are on darker skinned suffers. Beyond that, watching the condition spread across my face prompted me to consult Dr. Internet where I learned that every single thing I’ve described in this diary (and a number of things I haven’t) can be tied to hyperactive thyroid disease.
Imagine that! Bottled water might not be the reason I run to the loo five times more often than the average healthy person. And, instead of mumbling about psychiatrists and sending me off with a short scripts for Xanax, antibiotics and antihistamines, maybe my GP and other physicians should have paid a little more attention to the bigger picture during my various symptom-specific visits over the last year.
Tomorrow, based on Dr. Internet’s suggestion, I’m off to an endocrinologist to see if my thyroid is an overachiever. As far as autoimmune diseases go, it is a pretty good one to get because, while serious, it is easy to diagnose and very, very treatable. In fact, with proper medication, I have a 30% to 40% chance of sending it completely into remission. If that doesn’t work, I can swallow pills to radiate the hell out of the gland and kill parts of it off. And if THAT doesn’t work, a surgeon can just remove the sucker altogether.
And this brings me back to the start of this diary. In many ways, I am viewing my appointment with the endocrinologist like a child views Santa’s impending visit. I’m praying I get what I want and will be crushed if I don’t. Please, dear endocrinologist, I’ve been a very good girl and I really want an autoimmune disease diagnosis this year!