All Things Thyroid + Low Iodine Diet

21 March 2013

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.

35 comments:

  1. there is a more natural alternative to synthroid it's called armour my friend takes--it just a thought

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  2. Medical junkie here - and love that you're so willing to share!!

    I hate diets or any restrictions on food...ever. I've really been struggling with all the sweets in the office because I am a weak little mess of sugar cravings, despite my whole 30 success.

    Praying for good results on the scan!

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  3. Doesn't kosher salt not have iodine? It's pretty much all I use but I feel like I read some warning that was like, "Hey, kosher salt doesn't have iodine you need to use table salt!"

    But you probablt know all the non iodine things. Anyway, I found this interesting - thanks for sharing!

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  4. gah taht diet sounds pretty horrible. No dairy? What a B. Praying everything goes good pretty mamma!

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  5. I love that you posted this! I'm a new follower and just got diagnosed hypothyroid last week. Sort of glad there's a real reason I'm exhausted, emotional etc. Thanks for sharing!

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    1. I am just amazed that there is another new reader named/nicknamed "Shan" out there in the world! I'm Shannon or Shan and I've never seen that name on any blog comment but my own, ever! :)

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    2. Too funny! Growing up it was Shabby, but that's horrible and I can't stand it.

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  6. Thanks for laying that all out! My sister was diagnosed with Graves' disease when she was 17 and had her thyroid removed also. She has a big scar, too, so she's in your camp on that one! Synthroid there also, but only every other day. Good luck with the scan - I'll say prayers on Wednesday!!

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  7. I'm really feeling for you. I suppose it's appropriately Lenten but SO not fun. You're in our prayers!

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  8. Thank you for sharing your story ~ will be praying for a clear scan.
    How long will you be on 'radioactive restriction' after the scan?

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  9. I have a friend who went trough the same thing...perfectly fine now. I can't have dairy all the time and it sucks, so can't imagine restricting even more. Glad it's temporary and wish you luck!

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  10. I'm glad to have this background. I started reading your life somewhere around Sebastian's infancy so now I'm all caught up. Keep us posted!

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  11. Warning: this will be a LONG comment so I hope it's worth it.

    To preface this, my mother has hypothyroidism and had her thyroid removed when I was little. She was afraid I'd be scared of her scar but I wasn't and I asked if, once it was healed, I could put lipstick on it to make it look like a mouth. Maybe Julia would enjoy that too.

    So, now that you know that I can sympathize with you I wanted to hopefully provide maybe just a little bit of help in the diet situation because... that's rough.

    1. A good seasoning is Costco's No-Salt Organic Seasoning. You know, in case you want to spice up your plain chicken.

    2. Since I know you are busy and don't have a lot of time cook food I wanted to suggest that you cook up some rice to have on hand and then saute some veggies (maybe throw on some unsalted chicken) for a meal. You can top it with a mixture of unsalted tahini, lemon juice, and Bragg's Liquid Aminos. It's real good, real easy, real quick, and thyroid friendly.

    3. And most importantly, here is a tip that will save your life without dairy: eat Daiya cheese. Seriously. It's super good. It's non-dairy and not exactly like cheese but it will certainly satisfy your needs during this difficult time. I e-mailed the company (because I care about you maybe a little too much) and they said that they use non-iodized salt, so go out and get some.

    The Brayn of Chalayn

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  12. Holy crap, my tsh was at 5 and I was sorta zombie-ish. I can't imagine 30! Armour thyroid has brought my life back. I bet you cannot WAIT for Easter deliciousness! I'm excited FOR you!

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  13. The scar gives you character, dahhhling. It's very Tina Fey of you.

    Also, I'm going to have to ask my mom what she eats when not having iodine and such. Don't hold your breath too much. She's a terrible cook. Shh.

    Prayers for you that everything comes out ok (which it will, obvs.) and that you turn into a superhero this time.

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  14. Thyroid stuff seems complicated. I'm in medicine for thyroid stuff (nothing like yours) and I still don't really get it! Prayers that it comes back clean!

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  15. Praying for everything to come back clean! I have hypothyroidism so I understand the medicine struggle.

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  16. So glad you posted about this! I've actually been kind of curious about your thyroid stuff but felt like maybe it was too prying to ask lots of med questions. You know, politeness and all.

    Hope your scan goes swimmingly and you can reacquaint yourself with cheese sooooon!

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  17. Prayers for you, Grace! That sounds like it would be hard enough for anyone, but add three little ones into the mix? That sounds downright exhausting!! Feel free to complain to us all you need to ;-)

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  18. Team trev will be keeping you on our prayers next week!

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  19. Praying for you! And seconding the salt comment - almost posi that kosher salt has no iodine? But maybe it's no iodine added? Maybe it's sea salt? Maybe I'll stop. Bless you and your salt-free fun-fre diet. xox

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  20. Oh my gosh- kosher salt. Not iodized! You MUST get some. No more of this salt-free bizniss. You're going to pass out from boredom and junk!

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  21. Praying for you!! You talk about it so casually, but you are amazing and inspiring. Can't wait to hear the good news and hoping you survive until then!! XO

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  22. That's awful, grace! I'm such a baby about food abstaining. you are in our prayers.And that pic, yep that about sums up a day in the life!!'

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  23. Yes, I just agree with Bridget. You are awesome and brave and positive and just thank you for sharing. Will be praying. ♥

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  24. My MIL had the same thing and got her thyroid removed, too. It took us FOREVER to convince her that nobody was staring at her scar, and that she didn't have to wear turtle necks all the time...in Laredo, TX, no less!!

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  25. *patting my head* (do I get extra point for rubbing my stomach?-because apparently points matter ;) Thank You for sharing this! We will be praying. And can I just say you look gorgeous in that pic! 3 kids? Really? If I didn't read it I might just think you borrowed one of them from a neighbor ;) (Ummm and how awesome does your house look..yes nevermind the crying children..they are always with us, right?) Thanks again for sharing what you are and have been going through.

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  26. I also find myself patting my head (I'm so obedient). You can make even medical issues entertaining! :) Praying for great results and lots of kosher salt!

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  27. I'll have a bucket of cheese fries waiting for you. You might have to come to New York to get them, but minor details. And if you can't hold your kids anyway...

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  28. I nearly peed my pants over the 4th grade lent comment. I'm happy for you that Good Friday is only a week away, where all the dairy and deliciousness is waiting! :)

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  29. I too can pat myself on the head (so proud). Good luck!

    PS - scar? what scar?

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  30. I have a scar on my neck from my Hodgkin's Disease almost 10 years ago that has still never faded. It's a long mark along my collarbone, so it makes wearing jewelry a problem, too -- especially since I still have scar tissue there that's very sensitive. Think of it as a conversation starter, though! I've had many people ask about my scar (and then they end up with way more information than they wanted). :)

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