All Things Thyroid + Low Iodine Diet

Like most posts around here ... this will be interesting to approximately no one but in the spirit of recording the vast majority of the trivials that go down at the Camp ... I'll pound out a medium post all about my thyroidless self. Me me me me me, as usual. I promise I won't make this into a medical saga drama as those can be ....... not my thing. (Regular drama? I'm all about it.)

I won't assume you have but if you haven't ... feel free to read all about the thyroid cancer diagnosis and thyroidectomy here. Pretty standard as thyroid cancer and removals go. I was ~17 weeks pregnant with Julia when we found out the little tiny nodule was cancerous and was able to have surgery like a regular not-preg but the treatment had to wait until after she was born. The radioactive iodine treatment is years and years better than chemo so I really shouldn't say anything negative about it but it's a little bit of a logistical headache because:

1. Before you take the iodine you have to be on a low iodine diet so that (to quote my favorite blogger, "I don't know science" so this will be rough) the iodine will cling to any remaining thyroid tissue (thyroids love iodine - I think) and light up nice and bright on the follow-up scan.

2. You have to be very hypothyroid before you can take the radioactive iodine (no matter the size of the dose). Hypothyroidism comes with being VERY tired and sluggish and (for me!) an emotional wreck. Your TSH needs to be at least 30 (regular TSH is 1-4ish) before you can take the iodine.

3. I'm lucky enough to be able to NOT have to stop taking my synthetic thyroid (synthroid - creative name!) for 5-6 weeks prior to the treatment/scans because a fancy little drug by the name of Thyrogen exists. It's spendy but we've been lucky in that our insurance has covered the cost of the injections (mostly covered, at least).

4. When I needed the treatment 2.5 years ago there was a Thyrogen shortage (of course there was) so we had to wait until some vials became available and they eventually did.

5. Doctors claim that there are no side effects to the Thyrogen injections but I can assure you (along with my poor sister who was visiting to help with Julia at the time) that I either turned into a temporary hypochondriac or they were lying because after the second dose I went outside to the parking lot at the hospital and couldn't find my car and crumpled into a huge pile of tears. Wreck.

6. I probably shouldn't blog next week, come to think of it.

7. So the real issue comes post-treatment when you can't be around people for a few days after. It was not fun not being in the same room as Julia when she was just Theo's age but Simon was the best mom--dad combo there ever was and I don't think Julia missed me for a second.

8. Are you asleep yet? I see a glimmer of drool on your chin and I don't blame you.

9. I'm not taking a hefty dose this time because I'm merely going for a scan (a scan that is long overdue because of Sebastian and Theo's pregnancies) but I still shouldn't hold the kids close to my neck after next Wednesday afternoon (so I'll probably just hold them by their feet far away from my body) because I'll be "radioactive" (I mean ... you know what I mean) and I don't want to zap THEIR thyroids. Luckily (!) my brother Paul will be visiting for Easter and will be employed to do all the heavy lifting around here until Simon gets home from work.

10. Um ... questions?

So ... the diet is terrible. My endocrinologist said, "it's not that bad! you just eat unseasoned chicken and ..... some salad" ...... well, it is that bad but thank you for that little ray of optimism. I probably rely on dairy in my daily diet too much but it's really hard to avoid dairy, salt (unless it's non-iodized which it NEVER is), seafood (easy), potato skins, red dye #2 (or something like that), meat that isn't fresh (no deli meat) and I guess that's it. So basically that leaves us with fruit and vegetables and unseasoned chicken and hummus. A super nice friend brought over unsalted tortilla chips and unsalted salsa so I've been living on that as well. Oh, there are recipes to make your own bread using potatoes and meals that require more thought and time than I like to devote to meal prep so I shouldn't complain but it's not the most fun. Luckily, alcohol is on the list of allowed foods.

What else? Nothing. Maybe you've noticed the scar on my neck ... but probably not. I scar easily and it seems that everyone elses thyroidectomy scars are pretty much invisible. Here's a pic from the other night ...

I guess it isn't that noticeable but it makes necklaces look silly and out of place and really cramps my vapid style.

I'll let you know when the scan comes back nice and clean (on Good Friday .... the day I can finally eat all the cheese and chocolate in the world. Why??? A little punishment for doing a 4th grade lenten sacrifice and only giving up french fries? probably.) Last time on the day I was given the go ahead to eat iodine ... Simon took me to Five Guys where I may have gotten sick from eating SO much ... but I kept on eating. I'm not proud of that fact but I can't promise it won't happen again. Gross? Absolutely.

If you made it through .... pat yourself on the head. Good job.