Once your thyroid has been removed, you’ll be seeing an endocrinologist for the rest of your life, starting at three times to twice a year. Before you go, you’ll visit a lab* a week or two before and have your blood drawn to make sure that you’re at the correct dose for your thyroid medicine. I believe that for the first two-five years, the dose will be high to help suppress any thyroid cells growing back into your thyroid (or cancerous thyroid).
The high dose can make you anxious, cause you to sleep less (as if you can get a full-night’s sleep when you have work and/or have a family), and make your period a bit abnormal. All of these side effects do wear off after awhile.
I’ve had my own dose change twice now. If you get your dose changes, don’t throw the previous bottle away. The doctor might have you switch back at some point. I’d suggest tucking it into your overnight bag so that if you go on a spontaneous trip, you’ll have your medicine with you. Don’t worry though, if you miss a day, you probably won’t notice it much, since your body has that large dose already.
Also, you’ll be having ultra sounds done at least twice a year too, to make sure that nothing bad is growing. Here is the result of my first ultra sound after surgery to remove not only my thyroid, but also a egg-sized tumor
There is a small nodule in the left thyroid bed, which may be residual thyroid tissue or less likely, thyroid cancer. The radioactive iodine should treat this area in the neck.
We will follow-up with the whole body scan as planned and thyroglobulin levels with this test. Also plan to repeat neck ultrasound in 3-4 months for follow-up.
Since I’ve been told that my thyroid seemed normal before (and it wasn’t), this note does not assure me.
So, having good health care is key, because this get expensive. 🙁 But even then, there is still a co-pay, out-of-pocket stuff, and etc. Crowd-funding sites, such as gofundme will probably be helpful here.
Anyway, after your first appointment with your doctor after your cancerous thyroid was removed, the doctor will tell you if she/he wants you to do a radiation iodine treatment. This treatment consists of eating non-iodine food for two weeks and then taking a radiation active iodine pill, that will hopefully kill any remaining thyroid cells left. Then, for three days, no one should be around you, including your pets. There are some jerks who don’t care about anyone else and who go shopping after they have taken the pill, possibly infecting others with radiation. (Don’t be an asshole like them). But the good news is that you can eat normally again! Bad news is that you probably won’t taste anything for about a month. Yep, I wasn’t told the last part.
Yes, this is going to suck. I’m not telling you this to scare you, but so that you are prepared and aren’t scared if this happens to you. I highly suggest making the iodine-free food a few days before you go in for your treatment. Because if your partner is a horrible cook, you won’t fully starve. I highly recommend that you download this free low-iodine cookbook at http://thyca.org/pap-fol/lowiodinediet/ and read it a couple of weeks before your big adventure. It’s helpful. And then you can shop for the low iodine food too. I found several things at a couple of large, chain grocery stores. Don’t buy in bulk though as once your three days are up, you’ll probably toss all of it because of your radiation hand prints. Better safe than sorry.
I think that I lost 10-15 lbs during the two-weeks that I was on this special diet. I believe that I mostly survived on sunflower butter and bread that I made a couple of days before. I don’t dare eating my husband’s cooking, and I didn’t think of making the food ahead of time. Learn from my mistake.
Now, let me tell you about the day that I went into the hospital to take the radiation iodine pill. The health care professional wore a lead apron and gloves. She brought a metal locked box into the room. She opened it to reveal two metal pill containers. Both had the unnerving Caution Radioactive Material sticker on them. She carefully opened them and gave me ten pills. I was surprised and told her that I thought that it would be one pill. She replied, yes, that is what they tell everyone, but you get all these. When she gave me a tiny bottle of water, I laughed and told her that I was going to need more. All these pills and only one tiny bottle? That ain’t going to happen.
After I swallowed down the big pills, I was told not to eat for an hour afterwards. It’s best to rest, so that the pills have time to do their job and not be thrown up. I didn’t have any issues with nausea or anything. Yay.
Be sure to have some hard candy on hand, as you’ll need to start sucking on these after you take the radiation iodine pill. One side effect from this treatment is that your saliva glands can clog up. I don’t think that I noticed this until the next day. It was painful to eat fruit, the lemon candy, or pretty much anything. You’ll start feeling it in your lower jaw. It’ll feel like fifty needles jabbing into your jaw there. You’ll just have to power through it. (Hopefully, you don’t experience this, but I did). This pain lasted for a few days to a week or so. I didn’t realize that I lost my sense of taste until a few days after. Drink lots of water too.
I used disposable everything, and after the three days were up, tossed it all in the trash. The bedding I washed and didn’t allow anyone near the bed for a week. I’m sure that my husband enjoyed having our bed to himself during that time.
I would suggest having friends or family watch the kids for a week, so your radiation doesn’t harm the kiddos. If the pets can room the house except for your area, that’s great. Otherwise, pet hotels are great, but can get costly.
Once you get past this, the worse is over. Well, unless you’re like me, and the doctor found a growing lymph node. Yep, I’ll be going back for a biopsy soon. I’ll keep you updated.
But I’d say that most of the time, you’ll be fine. You probably don’t have my luck.
A quick thing about the doctor’s note above. You’ll see that I had to do a whole body scan. I had forgotten about that until I went through all my test results. I don’t remember much about it as there wasn’t much to it. From the doctor’s note, I ingested 2.4 mCi I-123; I don’t remember if that was liquid or a pill, but I’m going to guess liquid. I did that the day before coming in for the body scan the next day. The results were good, “FINDINGS: 24-hour uptake is 1.1% in the region of the neck, equivalent to background levels.” You’ll want something like this too.
So, yay, great news, right? I think that for most people who will be going on their thyroid cancer journey, their adventure, besides the multiple ultrasounds and dose changes, ends right there. But we’ll continue on for a bit with me.
*The best time to go to the lab is right when they open, so that you can be in and out. Great for those who live very busy lives.