Thursday, September 11, 2014

When autoimmune disease runs rampant

Three times now my blood work has come back and I've been told to stay on the same dose.

Three times I've gone in and been told my TSH was "elevated."

I'm exhausted. I'm cranky. I'm yawning halfway through my first cup of coffee and I know it isn't just because the caffeine hasn't kicked in yet, or rather *now* I know.

The problem with autoimmune disease and being blessed with two of them is, for me, sometimes not knowing if it's just a case of poor sleep that leaves me fighting to stay awake at 10 a.m. or if it's too much coffee at night (which I rarely drink at night) that keeps me from actually falling asleep.

Is it lack of sleep because I stayed up too late writing that causes me to go from 0 to RAGE in a matter of seconds over something as inane as my child asking me to turn the water on in the bathroom for her to wash her hands or should I really be that miserable and pissed off because she won't just do it herself? Am I just a shitty parent? Why isn't there a fluffy pillow and a box of tissues here right this second so I can have my miserable cry fest while questioning everything I know to be true about me?

This is the face of hypothyroidism. It's also the face of hyperthyroidism.

I'm a thyro-mom (because it's easier than saying "I'm a woman who happens to be a mom and have thyroid disease") and it fucking sucks when things aren't controlled properly. It's a depression roller-coaster.

My "elevated" TSH was only a little elevated back in January when I'd had the 12-day headache from hell that finally went away after a week of 800mg daily doses (or more) of ibuprofen ... because the physician assistant at my endocrinologist's office said my labs were fairly normal and they saw nothing that could be causing a headache. This is after she told me on the phone, "We don't deal with headaches. Call your primary care doctor" and I argued with her while in tears (from the headache) to have my labs done one week early. One week early and she wanted to fight with me.

That next appointment is when I found out my levels were slightly above where they like to keep them for Graves Disease patients.

Four months later. Next round of routine labs and appointment. "Everything is looking good. Your TSH is elevated, but on the high end of normal." I didn't question it because I'd been told that before and everything was fine.

We decided to start trying for a baby finally after months of waiting because we wanted to make sure my body/thyroid didn't go crazy once I was off birth control. We've played that game and it was a horrific experience that threw my endocrine system into a virtual state of shock and shutdown.

First month trying and things went great. We had a positive pregnancy test last Friday after a week of testing with early response tests that should have picked up *something* before my missed period. Friday's test was faint but there, so I didn't share the news with anyone but my husband and my BFF. I got up Saturday and took another test. The line was lighter ... and the cramping and bleeding started shortly after that. Blood work taken Monday showed I was possibly pregnant, but for clinical purposes the test returned a negative result - a 2, whereas a 5 would have been considered pregnant.

Thanks, body.

It's easier to blame that on my thyroid than on my uterus, because my uterus and I have been through a lot together. My thyroid and I are still on rocky ground.

The new physician assistant I saw Tuesday at the endocrinologist's office (because I rarely see the same one twice, it's such a revolving door) started our appointment asking if we were still considering pregnancy. I explained how my weekend went.

"So, yeah, I'd say we're still considering it provided I get the all clear from my OB's office."

And the conversation progressed to how was I feeling, how's my vision (you know, minus the blindness), any swelling, any trouble swallowing, any ... headaches?

What? I thought this office didn't "deal" with headaches? I wanted to ask so badly, but since I try not to be a miserable bitch all the time I gave the honest answer - yup, headaches are happening fairly frequently. But her concern over my getting them made me finally ask:

"What did my TSH look like?"

"It's elevated."

"HOW elevated?"

"Five-point-three."

"What the fuck."

Yes, I dropped the F-bomb at my doctor's office.

And I let that sink in.

"That's high." She nods at me. "What was it last time?"

"It was *flips through labs results* ... 2.8."

"Seriously, what the hell!"

"We want you to hold the PTU and come back in six weeks."

They're going to keep me on the same dose that's now/has been suppressing my thyroid too much ... why? I want to punch walls and bunnies and flip tables and kick puppies on a daily basis over little things, I'm an emotional wreck, I sleep but I don't sleep, I've had trouble with my creativity lately, I couldn't care less if my husband comes to bed at night and I have some serious road rage (for fuck's sake people it is illegal to talk on your cell phone while driving!).

By all means, keep me on this dose.

I'm so totally OK with being a lab experiment. Please continue toying with my life since, you know, no one ever depends on me to function like a normal person.

... said no thyro-mom ever. (I should totally put that on a T-shirt. Quick, someone start me a Tee Spring campaign!)

I'm a thyro-mom and it sucks.

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