Tuesday, January 18, 2011

Spiraling

Today, I am tired.  Barely get out of bed, hand-shaking, dizzy tired.  It's Tuesday, but it feels like Monday because of MLK day.  And I felt the same way last Monday.  I wonder if there is a connection.

Last Monday, I was so dizzy I could barely walk.  My wonderful husband was so worried about me last week that he decided to take me to his own doctor.  Forget these alternative integrative holistic professionals that I've been seeing, he wanted me to see a plain old traditional MD.  Sweet thing.  I figured it can't hurt to get a second (or third or fourth) opinion.  So I took all the labs and records to him and he looked at them, listened to my story, and said the story I was telling sounded like this crazy rare disease called "sprue."  Wow, he must be brilliant!  With all the people I've seen, not one has mentioned sprue.  Never heard of it.

He ordered a lab test and I went home and looked it up on the internet.  At first glance, it looked like sprue is just another name for celiac disease.  I still didn't know why he called it sprue--maybe it's more exotic sounding and doesn't have "disease" at the end.  But the more I looked, I realized that sprue is derived from an old dutch word meaning "mouth blisters" which was the symptom that started it all for me.  So maybe he is a little brilliant.  Unfortunately, I cannot afford the lab test, being "between insurances" right now, so that has to wait a bit.  I believe the treatment is the same, though, so I've started trying to eat Gluten-Free as much as possible.  It makes sense.

In the meantime, I went back to MY doctor, who listened to my more immediate story, since she has heard all the rest.  She was especially concerned about the dizziness, and told me to stop taking the thyroid meds she had put me on in December.

Short history of my thyroid issues, which may be the key to it all:

1997--diagnosed with hypothyroidism, started taking levoxyl (T4)

2006ish--met someone who had intense thyroid issues who told me that she notices a difference every time she didn't take her medicine.  Realized that I often went without mine and never noticed a difference.  wondered why I was taking it.

2009--energy levels so low, doc ordered a test for adrenal gland output which was in "burnout" mode.  Then I went to 2 endocrinologists who both looked at my labwork and said, adrenal and thyroid levels on low side of normal, you don't need to take the T4 if you don't notice a difference.  Everything is fine.

2010--New labs, whole panel, look at everything!  My doc noticed something in the results no one else had seen:  While I had enough T4 stored, my body was not able to use it for some reason.  She prescribed T4 AND T3, another hormone that helps release it into the bloodstream.

I eased into it, taking half a T3 twice a day and 1 T4.  After a week, 2 T3s a day and 1 T4.  Let's see, I started taking it around Dec. 10.  By Christmas, I felt so much better I couldn't believe it.  I actually wanted to get out of bed.  I had energy to do the things I needed to do, plus more.  I hadn't felt this good in years.  I remembered what enjoying life felt like.  Wow.  UP SPIRAL!

2011--(and a little bit of 2010)--downward spiral.  Shortly after Christmas I started feeling poorly again.  First of all, I had a period every 2 and a half weeks for the last 6 weeks or so.  That's no fun.  Then I started having lower GI issues, cramping, bloating, gas, loosey gooseys.  And of course, energy levels WAY down again.  Then the dizziness/weakness started.

So I stopped taking all thyroid meds, which kind of pissed me off, because I knew I would have another up and down spiral.  A couple of days after getting off of them, I felt pretty good again as the levels of medicine were getting lower.  But now I'm back where I started and very ready to get the levels balanced out.  It was such a tease, actually feeling good again!

Acceptance--that's the word of the year.  This is where I'm at today.  Today, I will get rest and food.  I will not cry and whine (anymore) about the present.  It is what it is.  Spiraling has its ups and downs, right?  (Sorry)  Today I accept my reality.

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