I got RAI (radioactive Iodine) to kill off my thyroid due to Graves’ disease in 2001, I think February of that year if I remember correctly. I went from hyper thyroid to hypo in less than 3 weeks. They did an ultrasound after six weeks and there was no living tissue. So, for the last several years my only source of thyroid hormone has been a thyroid supplement medicine. I’ve been having fun playing tag with my thyroid levels. They put me on one dose, six months later they test me and I’ve gone into hypo ranges, so they bump me up. Six months later I’m normal. YAY! Then six months after that I go hyper, so they bump my dose down. Sometimes I have felt like a human yoyo. I have no thyroid so why would my levels go up and down so much?
What they didn’t tell me, but what I’ve figured out, is when you have a working thyroid, your body usually does a great job of figuring out how much thyroid hormone you need. Extra amounts of stress currently? Then it pumps out a little more to help you cope? Been sick? Then it pumps out a little more to help you heal. Things going fairly smooth and calm? Then it sends out a little less.
So what happens if you have no thyroid at all to regulate things? Then you enter the Guessing Game. Your doctor guesses how much average thyroid hormone you are going to need, sometimes based on labs and usually also based on your weight. Sometimes the guess is good and you don’t need your labs adjusted. Some people never vary much so they stay on one medicine and do really well. Others (like me) the Guessing Game fails. Say for instance your doctor puts you on 137mcg of thyroid hormone daily. Now say that over the month you average one week needing about 140mcg a day, next week you need 125mcg daily, the next week is stressful and you really need 150mcg daily and the fourth week is also bad and you need 140mcg. This whole time though you are going along taking your 137mcg. You add what you actually needed during that month divide by four weeks and you get an average of 138.75mcg is what you needed for the month. Not a huge difference from 137mcg, right? Well thyroid is a very sensitive thing and it doesn’t take much to throw you off. Now you average needing more than you’re getting for five, six months and your thyroid levels aren’t enough to keep you going. Then you start going into hypo thyroid ranges. All the sudden you are tired, muscle fatigued, brain fog where it’s hard to concentrate, your skin and hair start suffering and so do other parts of your body. Go on too long and it gets worse and can affect everything. Just the same if you start averaging needing a lot less than what you are on, then you can gradually start going hyperthyroid and your entire body gradually speeds up until it’s going 100mph.
Not a good scenario, either one. This is the world I’ve been living in since 2001. If I’m really lucky they guess right and no major body changes to need more or less for several months. I’ve gone as long as 12 months without needing a dose change in the last several years.
So that’s the pattern I’ve had forever. Thyroid goes into hyper, lower the dose, a few months later back to normal, and on and on.
This year was a little different. I kept going more and more towards hyper. So doctor did what she always does and lowered my thyroid medicine. Went back four months later for a checkup. My thyroid levels went UP. How is this possible when my thyroid is supposed to be dead and as of 5 years ago when they did the last ultrasound it was all still dead. So we do another ultrasound, I have now some regrowth of thyroid tissue. You know doctors almost never tell you this can happen? Right now I’m waiting to figure out how much of this regrowth is affecting my current thyroid levels. Is it pumping out a lot of hormone? A small amount? Will I need to reduce my dose again? The Zombie thyroid has struck and I am no longer safe in the knowledge that it can’t torment me. Stay tuned as I find out in the next month what this all means.
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