Yay! I got my results back and I seem to be fine for now. There still is weird growth or whatever in a left gland. I wish that they would just take it out. I have made this request before. With all the other surgeries that I’ve had, I’m getting covered in scars…so what’s one more?
Anyway, I’m just going to copy & paste my results here –
INDICATION: Thyroid carcinoma post thyroidectomy
TECHNIQUE: 2.4 mCi I-123 was ingested by the patient, and 24-hour neck uptake
and whole body planar imaging performed.
FINDINGS: 24-hour uptake is 0.7% in the region of the neck, equivalent to
background levels and decreased from 1.3% previously. No evidence of recurr entor metastatic thyroid cancer. Activity in the nasopharynx, salivary glands,stomach, colon, and urinary bladder from normal routes of iodine excretion.
Activity in the left parotid gland remains somewhat asymmetrically prominent.Faint radio tracer uptake about the knees consistent with synovitis.
If you’re a woman like me, and if you’re going through this health issue, you’ll want to know this stuff. If you’re a guy, you’re either curious or grossed out. If you’re the latter, you can stop reading now. I’ll get into the spoiler in the next paragraph.
One thing that your doctor may not tell you is that when your Levothyroxine (or whatever your thyroid medication is called) is changed, this can affect your menstruation cycle for a month or two. Usually, you’ll be a few days late. This is normal.
Now if you lucky (ha!) enough to go through a I-123 whole body scan, you may spot between a period because you’ll have two things against you – the two thyrogen injections and an iron deficiency. The iron deficiency would be the main reason for the spotting though, because when you’re on an low-iodine diet, the diet is restrictive so you aren’t getting all the iron you need. And you might not be able to take vitamins during this low-iodine diet either. (I didn’t take any iron pills or vitamins during my bland, boring diet since I can’t be sure that their ingredients weren’t tainted by soy, iodine, etc).
The good news is that once you start taking iron pills and/or your vitamins again, the spotting will stop. (Of course, since I have no idea what all your health conditions are, you’ll need to speak with your doctor about iron pills and vitamins).
From the last post, I mentioned that my doctor was concerned with some blood draw results, since I have an odd unknown thing on the left side of my neck. She said that the next step was for me to have the I-123 whole body scan to make sure no thyroid cancer cells started growing anywhere.
Starting on a Monday, I began the low-iodine diet consisting mostly of fruits, vegetables, homemade bread, pasta, gluten-free dark chocolate, no sodium ground turkey, and no sodium chicken. I marked my weight being 123.4 lbs. For the first week, I felt fine. But that Sunday, I felt incredibly hungry. I found that a local grocery store carried gluten-free and other special diet foods so that helped. Unlike last time where I lost a lot of weight, the most that I lost this time was 3.6 lbs.
The food was a bit bland at times, as dairy, stuff with sea salt, lots of meat, certain beans, and etc was prohibited. You’d be surprised at how much food has milk, soy, and is probably made with iodine salt. All were big no-no’s on this diet. The lack of a variety of tasty food made me tired for the nearly two weeks that I was on this diet. Besides work, nothing else really got done.
That following Monday, there were medical appointments each day, at approximately at the same time as the previous one. The first two days consisted of one Thyrogen 0.9 mg IM injection. These shots are to make me hypothyroid – so, tired and slow.
Oh, you get these shots in your ass. Just so you know. Just in case you usually go commando most days. But the nurses probably don’t care
The third day was going to the labs for blood and then taking ten sodium iodide I-123 capsules. I was surprised that it was only ten this time. Wasn’t it twenty last time? Also different was how they were packaged. Instead of metal canisters, these pills were in a single thick plastic canister. Inside this canister was a funnel looking thing that held the pills. I could pick out a few easily, but when I tried to bang the rest out, several fell on the floor. I apologized and the medical attendant picked them off the floor and handed them to me, asking if I needed more water. Since I was given a single 8 oz bottle of water, I said yes. And I asked if taking the pills off the floor was okay. The medical attendant said, “five second rule,” and then left to give me another small bottle of water.
You probably don’t know this about me, but I’m a bit of a germaphobe. It drives my husband crazy at times. So, I’m staring at these pills, wondering if I really need to take them. What could a few missing ones hurt? Since the attendant left, I could toss them and he wouldn’t know. But I figured that since I received half the amount than last time, I probably should take these. But it was a struggle. I tried to wipe this pills off the best I could without accidentally opening them. And then I swallowed them, finishing off the first water bottle. Ugh. So gross.
The fourth day was the whole body scan. I had to stay still for about an hour while the machine scanned me. It was nice to have the heated blanket covering me. I should have asked for the plastic splints or whatever they are called to help keep my arms at my side. After awhile of trying to stay completely still, my arms felt weird and week. Oh, and if I have to do this again, I’ll ask to have my phone play music somewhere above my head. It gets a bit boring when you’re the only one in the room and you aren’t allowed to move for an hour.
But once the scan is over, it’s time to eat normally again! It was the highlight of the two weeks. I’m sure that I annoyed many people with my wish list of all the food that I was going to eat once I could eat whatever I wanted again. I think I gained back that 3.6 lbs that same day. So proud. And I’m not even kidding.
That Friday saw me back at the labs for more blood work so that they can check my thyroglobulin levels.
I’ll write about the results of all these fun tests in the next posting.
Before my upcoming appointment with my endocrinologist, I had to have my blood drawn for thyroid testing – TSH and Free T4. A few days later, my results came back good. My TSH was 0.01 ulU/ml with the Standard Range being 0.30-4.5 0.01 ulU/ml and Free my T4 being 1.3 ng/dl out of a Standard Range of 0.7-1.5 ng/dl.
As in the last post, the weird growth was stable. But something spooked my doctor and she urged that I prepare myself for another whole body scan…and that dreaded low iodine diet. Well, seeing that I should be at 115 for my size, but I’m at 125 now, I guess it’s probably a good thing. Grrr…
Good news – Ghirardelli now makes dark chocolate chips that are processed on a non-diary, non-nut, and a non-soy facility. Yay! No iodine worries there. I wonder if I could survive on a diet of this and red wine for those 7-10 diet days.
One of the questions people ask before and after having their cancerous thyroids removed is when will that thick red ugly scar go away. I guess it depends on how healthy you are, if you cover the area with fabric and/or sun screen, and how healthy you eat. Well, I kinda fail at all of that.
I had surgery to remove my thyroid cancer back in March 2016. Someone told me to pinch and rub the scar between my thumb and finger to loosen the fibers to prevent scarring. I think that I tried that, but it felt very weird and painful. I didn’t really worry too much about covering it, and I might have put sun screen on a handful of times. My scar is still present today, although it had faded much. (See photo). This scar fading took nearly two years. I’ll guess that by the end of 2018, the scar should be even lighter in color or perhaps faded into a white line. (I have other surgery scars that are several years old that are a fine white line).
After doing the whole body scan, I went out and had a cheese burger and fries. Over the next three days, I gained back all the weight that I had lost. (It was worth it).
The day after the body scan, my blood was drawn for testing. I had forgotten to come in for the blood work on Monday, the day before first injection, as the doctor wanted to see the thyroid levels in my body before going through the procedure. Oops.
After a week or so, I got a phone call telling me that I needed to schedule an ultrasound as the doctor saw that a node/lump/thing (I don’t have my medical record for the actual term) was getting bigger, indicating possible cancer…again. If the ultrasound showed that the area could be cancer, the next step was another biopsy and then surgery, if the result tested positive for cancer.
Naturally, I wasn’t happy about this and later called my insurance to see if I would have another choice of surgeon if I had thyroid cancer had returned.
I scheduled the ultrasound appointment and when the time came, went in for it. The jelly they coated my throat was warm. I used lots of tissues to remove it when the technician was done. I always miss a spot, usually below an ear. The jelly doesn’t feel as nice when the jelly is cold.
A week or two later, I got another call from my doctor. I was told that the lump/tissue thing was stable, so no biopsy was needed right now. I was told to book another ultrasound appointment in 6-7 months to check on it again.
At this point, I’d rather have them take it out now, so it doesn’t have a chance to grow bigger or into cancer. Also, I’d rather a surgeon cut a different opening to remove that tissue than the same spot in front of my throat. The scar in the front of my throat is slowly disappearing. I don’t want to make the tissue weaker or cause a permanent scar.
I guess if you needed a mandatory way to lose weight, the low-iodine diet is the answer. No diary, no salt, no milk chocolate. Sure, you can have non-iodine salt, but how can you be sure that other companies sure that instead of iodine salt. I didn’t take any chances. I lost 6-7 pounds within two weeks. My stomach was flat again. (Okay, I enjoyed that while it lasted (2-3 days) afterI got back on my regular diet of nearly everything).
You can have alcohol on the low-iodine diet, but it’s not recommended, as your body is essentially detoxing. I tried drinking a beer. I had a few sips and dumped the rest. It tasted so gross. (It probably doesn’t help that I really don’t drink anyway).
A day or two after the whole body scan, I got a call from my doctor telling me that I may have thyroid cancer again. (Grrr….) There is an uptick in thyroid something. I’d have to look up the test results they sent me. The plan is to continue with the thyroid ultrasound and then another biopsy. If that comes back positive, then I’m back under the knife. I’ve already decided that I want a different surgeon, and that I’m not doing that radiation treatment again. If it didn’t work the first time, fuck this.
On morning Friday, I got a phone call from my doctor. She told me that the biopsy concluded that it wasn’t cancer. Instead, what I had was a reactive lymph node. When I asked her what that meant, she said that my body was fighting off an infection. Sure, I thought, but I’ve heard similar remarks before.
The pain from the biopsy should go away soon, and can take up to a week.
After the call ended, I texted my husband and called my mother with the news. Both were happy. Later that night, we bought a frozen cake and had a beer to celebrate.
But still, I’m leery. I will hope for the best though.
I would like to thank several kind folks who told me about their thyroid cancer experience on Facebook last year or so. Knowing what was going to/could happen made this experience a lot less scary. Thank you.