Wednesday, October 15, 2014

My Thyroid Journey

I've mentioned some health issues recently.  Here's what's going on. 

There is very little online about what I went through - firsthand accounts anyway - and so I decided to tell my story so that others will know they are not alone.

My mother had thyroid issues. 

She had half of her thyroid taken out at age 22 when the doctor felt nodules on it.  The other half was taken out 14 years late, at age 36.  My mom was also diagnosed with Type 1 Diabetes in her late 30s.  This is very unusual and, apparently, genetic.  When I went for my annual physical, I was always on the lookout for blood sugar numbers when my labs came back.  I never, ever thought about my thyroid.

My labwork indicated a low (which means high) TSH number. 

Okaayyy....  TSH = .02.  Unofficially, I had hyperthyroidism.  I knew about hypo but I had to read up on hyper.  I requested a referral to an endocriniologist and off I went - for a $60 specialist fee.  The endocrinologist did a sonogram on the first visit and, thankfully, I had no nodules.  The surface of my thyroid was bumpy, however, so the doctor termed it pseudo-nodule.  She also ordered more complete bloodworm - more thyroid numbers - and an iodine uptake scan.

My T3 and T4 levels indicated hyperthyroidism and my TSH number was even lower (.01) than before.

At this point, I'm stressing out.  The doctor makes me an appointment at the hospital for my iodine uptake scan.  On a Wednesday, I show up at the hospital, am given a pregnancy test and, once that is clear (negative), I'm given a slightly radioactive dose of iodine.  No, I don't feel any different.  The next day, I go back to the same hospital for the scan.  It's super easy, except that there's a big block of x-ray equipment hovering above my nose for 20 minutes.  I close my eyes and take deep breaths. 

After the uptake, it's back to the endocrinologist.... talk treatment (for another $60 specialist fee).   
There are only three treatments: surgery, radioactive iodine, and a daily pill that has a set of possibly alarming side effects.  After debating taking the one and only pill option - every day, possibly multiple times per day - I was back to thinking radioactive iodine was the best option.  But I wanted it done quickly; we have a cruise in mid-November and then it's a non-stop flurry of activity through January.  We all agreed the radioactive pill was the best option.  We scheduled it for the next week.

Radioactive Iodine means you are radioactive.

On a dosage scale of 0 to 200, my doctor said I would get a radioactive iodine dose of 15.  That doesn't sound so bad, eh?  Well, there are still tons of precautions to take - you have to be in isolation for 7 days.  For the first 72 hours, you have to maintain a 6-foot distance from everyone, including pets.  Kids and pregnant women are a no-no until 10 days after treatment.  You cannot sleep with anyone for 7 days - and obviously cannot kiss (or anything else) for 7 days.  You must wash your clothes and dishes separately and use a separate bathroom.  And you cannot sweat, as that's another way the excess radiation leaves your body but in a very un-contained way.

So…how big is the radioactive pill?

When the doctor  said the pill is "about the size of a multi-vitamin," I tried hard not to panic.  I'm not a great swallower of pills, though I take a multi-vitamin.  What if it's bigger than my multi-vitamin?!  OMG!  I'll choke!  Finally, the day came to take the pill.  I drove myself because you can't be in a car with anyone for 7 days.  After saying some states allow patients to return to work after 72 hours and being completely flippant about some of the measures I'm required the take (sure, go out in public after three days, but stay away from people!), the doctor then led me into a room, handed me a bottle with tongs, and told me to empty the pill from the bottle directly into my mouth, swallow, and leave from the clinic out the back door.  Oy.  With shaking hands, I opened the bottle….and the pill was the size of a Tylenol.  Sigh.  I swallowed it, drinking all of the 2 dixie cups of water she provided (really?  nothing more?) and left, partially ecstatic that it was no big deal, and partially terrified that I was radioactive.

The next seven days….

Passed quietly.  I had no pain and my body didn't give me any clues as to being radioactive.  I did not glow.  I took the pill on a Wednesday.  On Sunday, I went through a drive-thru for different food.  On Tuesday, I walked into a Walgreens at an odd hour to pick up photos.  I returned to work on Thursday.  I enjoyed my time at home, even if it meant being physically separated from my husband and cats.  After the 72 hour mark, we both exhaled a bit.

After radiation?

The doctor monitors you to see when your thyroid, essentially, dies.  It doesn't happen immediately and that's why the treatment is painless.  It takes 3-6 months for the thyroid to "die."  And so, you need monthly blood tests to see when, exactly this happens and when you need to start meds for being hypo.  That's right, 80% of all hyperthyroid patients who receive the radioactive iodine treatment are then diagnosed with hypothyroidism, needing a thyroid hormone for the rest of their lives.  But that hormone is cheap and easy compared to the daily pill needed to suppress the thyroid if you have hyper.  And there are no side effects.

So that's my journey from diagnosis to treatment.  I go back to the doctor at the end of the month for my first blood test to see how less active my thyroid currently is.  I'll go back every month for quite a while.  All of these tests and radiation are not cheap.  

I'm sharing this so that anyone who is diagnosed with this, completely unexpectedly, like me, will know what the heck is going on.  This was my first big health issues ever….and I'm still not happy it happened.  These things are never easy.

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