On Wednesday I got a message from my doc that said I should start on a low-iodine diet now (which she had never mentioned to me before, though in doing research I had already found out about what it was and kind of expected that so I wasn't thrown completely for a loop), and that she wasn't sure if I had an appointment to come in soon, but I should make one if I didn't. (I had an appt scheduled for today, based on the schedule she had given me but apparently not written down.) Confidence low.
Thankfully my endo's nurse had straightened out the lab paperwork snafu from last week so yesterday I was able to get in and out in 20 minutes for my blood draw, which raised my confidence in the office again.
Today I arrive for my appointment, and they have my TSH number** from last week but not yesterday. The nurse calls over for the latest number, and brings me to an exam room. Dr T comes in and my numbers are in fact going up fast. On 7/2 my TSH was 10, yesterday it was 47. (Normal is between .5-4.0). This is a much faster increase than we were expecting. The earliest I can do the treatment is 7/17 or six weeks after the surgery. It would be better to push it later to allow the low iodine diet more time, but every day we wait is another day I don't feel well since my TSH will just keep climbing until it's done. I have a target date in mind now that I know I'm already in the zone. She gives me a number to call the hospital to schedule my radioactive iodine treatment (really? the patient does that?) and defers most of the questions I have to them. She gives me prescriptions for meds I can start taking the day after the treatment, and combines a T3 and T4 drug so that I'll fell better asap. She also gives me lab paperwork for before and after treatment and seemingly doesn't want to spend much time chatting. Confidence middling.
I had other errands to run so I just got around to calling the hospital. The nurse on the other end informs me that I do not schedule the treatment, the radiologist does. She explains to me that Dr. T has faxed over my paperwork, and that it will be assigned to a radiologist there who will look over everything and then call me for a consult and to set up the appointment. A) this makes so much more sense B) I hate looking like an idiot when I was following the instructions I was given. I had also been hopeful that I could have a date set so I could plan around it but now I'm back to waiting for a phone call. Confidence in Dr. T extremely low. I'm debating calling her and leaving a message so she knows, but during office hours I speak to her nurse who I like and I'm not overly calm about this right now. Gah!
So in any case, I'm still not thrilled with Dr. T's inexperience and her unwillingness to look into things (like will the hospital she is setting me up at take my insurance) that aren't specifically her responsibility. I'm also frustrated that I don't have a date for this set yet, since I won't feel better until it happens. But at least I know with a TSH that high that I'm not insane.
***rl friends have been asking so here is my version of what TSH is. Those of you know feel free to skip or critique.
TSH is not a thyroid hormone. It is produced by the pituitary gland to tell your body to make thyroid hormone. Think of it like a work order where 1TSH = 1 stamped request. The pituitary foreperson looks around and thinks, 'we need some more thyroid hormone' so it stamps a work order and puts it in the blood stream where the thyroid gets it and makes more hormone. The average person has a TSH of between 1-4, so that is how many times a day, say, that the pit foreperson stamps a request to keep everything running smoothly. So my TSH of 47 means that twice an hour the pit foreperson is going 'Where is that hormone? I know I've already asked for this, are you deaf??' Which of course my thyroid essentially is because, it's gone.
The reason for this insanity is that any thryoid cells I have left (including cancerous ones) are pumping their little hearts out trying to make hormone and failing because there aren't enough of them. Add to that the low-iodine diet, which is what the thyroid uses to make hormone, and my poor remaining cells probably sound like Scotty: "I can't do it captain. We haven't got the tools!" So when we put radiated iodine in any thyroid cells I have left will gratefully suck it up and then die. Which is a good thing. Even if with TSH levels like these I have a daily nap time, have put on five pounds in two weeks, and now can't eat dairy, seafood, eggs, soy, or a host of other things. My new mantra: it's better than cancer.