Sunday, February 12, 2012

React and Overreact

Treating Hashimoto's disease is very difficult because it's like a dog chasing his tail. It's a never-ending chase. TSH goes down, doctor lowers the dose of thyroid medication (aka T4/Synthroid/Levothyroxine), TSH goes up, doctor raises the meds. It seems like the doctors are always reacting to what's already done. I'll put a timeline down based on what I go through.
Day 1 - I go in at 7:30am for them to take a sample of my blood.
Day 7 - I go in to see the doctor and the doctor decides my fate.
Day 49 - The new dose is in full effect.

Here is what doesn't make sense to me. There's 7 days between taking my blood and the day the doctor reads my results. I have Hashimoto's disease, which by definition means my labs will change as often as they like. Sometimes my thyroid works, sometimes it doesn't. It all depends on what it feels like that day. So maybe the day I had blood drawn, my thyroid felt like getting out of bed. Then the very next day it decided it was going back into hibernation. So the day I see the doctor for my result, my thyroid is still in hibernation, has been all week, but the doctor looks at my test results and says "I'm going to lower your T4 dose."
Now, if I'm having a bad day, I don't get my blood tested. I can't. A bad day usually means I can't even find the energy to get dressed or I'm in so much pain that getting dressed is just not an option. I always get my blood tested on the days that I feel better, which means they are the days my thyroid has decided to perk up and do something. Hmm... That kind of bites because my tests will always show I'm doing better than I really am. So the doctor will lower my T4's. It takes the new dose 6 weeks to be in full effect. 6 weeks. No testing during that time. The doctor doesn't even want to hear from me those weeks. Since the new dose is less than the previous dose, it makes my bad days worse and more frequent. And it all started because I felt well enough to get my blood taken for testing.
Is there a solution?
How about I drag my butt in there when I don't feel well? Drive when I can't wake up and take the chance I won't get in a car accident? Take the chance my confusion won't end up causing me to drive into the side of a building or a tree? Because bad days include confusion so bad that I can't even answer my phone, pain so extreme walking makes me cry, exhaustion so overpowering that I fall asleep when I don't want to.
What if the doctors tested more often? Perhaps labs are that busy? Perhaps doctors aren't all that busy and they can read my results the same day the lab completes it? Sure. Because I'm the only patient they have.
So what's the solution then?

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