Tuesday, August 5, 2008


Sorry for the delay in this update, but it’s actually good that I waited to write this update. It seems like every time I talk to my dr. the plans change. It’s actually getting really frustrating, because I prepare myself for ‘x’ and then ‘y’ takes place with the new plan.

I have a ton of social stuff planned for the next month and a half and these appointments could really affect them. Seriously! Talk about cramping my style. For example, I first thought I'd have to go off my thyroid medication for the first test, which is a neck scan. That would have caused some major planning and rescheduling of certain events. However when I talked to my dr. yesterday it seemed like the best plan would be for me not to go off my meds for the first scan.

Let me back up a bit. For all of the tests/scans I need, I either need to get 2 thyroid-stimulating hormone (TSH) shots, or go off my meds. The more thyroid hormone in my body, the easier it will be to detect the tissue/cells. With the shots, I get a huge dose of TSH instantly. However the shots are $2000 a pop, and most insurances don’t cover that cost because patients don’t really have to have them. They know that the patients have the option of going off their meds, and that people don’t want to feel like crap so they will fork over the cash for the shots. Real nice eh? Last year when I needed the shots before my radiation treatment John's insurance did cover the cost. Now we are on my insurance and they don't want to pay for them as well.

Going off your meds takes a lot longer and the result is that is slows your body way down. By going off the meds, my hormone levels would decrease, causing the pituitary gland in my brain try to work really hard in contacting any thyroid cells in my body to start producing the missing hormone.

I first thought I would be able to go off my meds, (save the cash), and be able to have both of my tests/scans back to back. I later found out that that won’t work because the radiologist my dr. needs to work with is out of town for a month. My doctor was afraid it might take an extra week to schedule both appointments and he didn’t want me off my meds for that long.

Before I knew that I was trying to figure out when would be a good time to go off my meds. Ummm maybe like in November? I’m going to be traveling most of the weekends in August and it was going to be really tricky to try to figure it out without being a total downer. Results of not having enough THS in my system are as follows:

· Feeling tired, weak, or depressed. - Like I need another thing to make me more depressed?
· Dry skin and brittle nails. - My nails are weak as is! How could they get any weaker?
· Not being able to stand the cold. - This shouldn't be that bad since I'm used to being cold.
· Constipation. - Why do my thyroid issues have to do with my bum? They should in no way be related!
· Memory problems or having trouble thinking clearly. - Eh...this wouldn't phase me.

After I started to adjust my plans around being off my meds, I then found out that the best move would be to get the shots for the first scan. For the first scan (radioactive iodine uptake test), I will take a small dosage of radiation, 5 millicuries, (I had 75 millicuries for my radiation last year), and then they will scan my neck to see if the area looks ‘hot’ or ‘cold.’ I had this same test last year when they were trying to figure out if it was cancer.

If the test comes back positive then I will have a 150 millicury dosage of radiation.

If the test comes back negative then I will have a Positron Emission Tomography scan (PET). I will need this scan to help locate where the thyroid tissue is. If it doesn’t show up in the neck scan, then it must be somewhere else in my body. For this test I will again need to either get more shots or go off my meds. I hope I will be able to go off my meds for this scan.

I will also be getting my blood work done again after the neck scan. My test first blood test result should have been around a 0.1, but it was 36. 32 is the normal result for someone who has a thyroid, so I can see my doctors concern. I’m hoping that the neck scan and the new blood work will show up negative.

It also looks like I will probably have the PET scan or radiation after our trip in October. That is bummer because I’d really like to be done with all of these tests before we leave, but my doctor doesn’t seem to be in that big of a hurry. He says as long as we get all the tests done within 3-4 months it will be fine.

I guess it’s ok because the only social event I have on the calendar after our trip is our Halloween party. Granted it would stink if I felt like crap for it, but oh well. Maybe the timing will work out. Could that be? Could something actually work out in my favor?


Trina said...

Thanks for the update. I'm praying for you, girl.
We recently moved back to Humboldt and we are loving it. Call me when you come up this way.
I would love to have coffee.

Lori said...

Thanks for the update Amber. Cancer kind of sucks, doesn't it?