RAI on the 25th and nerves galore

Seri said:

Thank you!
Thanks so much for responding! I feel so ignored so often it's very comforting to see the responses and advice. I have had to figure out most things on my own. All of my docs are closed books and the only time they share is when I drag it out of them. I have some other health issues going on right now too, and I am worried about how this is going to affect them. My throat swells pretty easy due to allergies and I have a hiatal hernia that causes the sphincter in my stomach to not work and acid causes scar tissue to build up and make it hard to swallow (luckily, I had my esophagus stretched in May, so hopefully that part won't be a problem). I am a bit nervous that the RAI will make my throat swell even more and I will be completely by myself, not at home or in the hospital, so what on earth am I supposed to do if that happens? Hopefully I won't get any side effects, but I should probably know how to handle that. I have been having a lot of pain near my hip too, and my GYN found a large cyst on my ovary, but isn't sure that's the cause. The docs said we won't even look at it until we are done with this, which I understand. It's just really painful and hard to sleep, so it doesn't help anything. I think my radiation dose is closer to 100 mci, so hopefully it will be a piece of cake and I'll just be bored and lonely for a week (or I'll enjoy the quiet too much and not want to go home ).

I am always most worried about my kids, and trying to be a good mom and deal with all of this on top of it. They are still young enought that they don't understand why mom can't stop crying (or suddenly is mad at them), or why she needs everyone to help out more while she sits down for a bit, or why she can't eat a certain thing. They have been so good though, and I just want to feel like I can handle them again.

Your issues don't sound fun, Nasher. I too wear glasses and I need a new prescription, but from past experience, it seems like my eyes change over the littlest thing, so I am waiting until after this is over to go. It's funny you mention hearing. I could swear mine has been worse since the surgery, but maybe it's just part of the brain fog that has been really bad.

Do you have any favorites for sour candies? I stood in front of the candy section and basically just blankly stared. Does it need to be hard candy, or would something like starburst and sour skittles help too? Does everything you eat just taste awful now? I already hate eating due to the swallowing problems, now it could taste bad too? That is my luck lately. When did they let you eat normal foods and get back on your meds?

Thank you for a listening ear. I really am a positive person most of the time (even though I feel I whine a lot lately). I am grateful this will be over soon, I just have to take one day at a time.

Seri said:

Surviving
Well, I'm finally out of isolation. I did have a few side effects and despite being told that it usually does nothing, I can feel the trauma my body is attempting to recover from. I definitely feel like I'm in "heal mode". My body just wants me to sleep and sleep some more. I felt sick to my stomach pretty quick after I took the pill, and still feel that off and on. My salivary glands were extremely swollen when I woke up the next day. I felt like I had just gotten my wisdom teeth out again. I drank as much water as I could, even though I felt sick, but I couldn't eat candy without feeling extremely ill. I finally remembered my 5th grade teacher who had a salivary gland problem who chewed gum constantly to keep the saliva flowing. I asked my hubby bring me gum to chew and that helped a lot (especially once the sugar dissolved and I didn't feel super sick anymore). I never actually threw up, but I Sort of wished I would have since it might have helped me feel better. Now I feel like a car hit me (every bone and muscle in my body just aches, especially my neck and my hip), and my glands are still sore, but not quite as swollen. I have the iodine taste in my mouth that won't go away. I'm really tired.

LizP- I did get a little bit more fatigued as time got closer, but not too bad since I chose to have the thyrogen shots so I did get to stay on my meds (they just won't give me a very high dose for some reason). The LID caused a bunch of calcium problems that caused a lot of muscle problems and I couldn't sleep. My emotional state was the hardest to survive during the month of waiting for the RAI.

Question for anyone- is it normal for your endo to make you wait another 8 weeks after the RAI before they check your blood and give you a decent dose of levothyroxine? Can anyone tell me the reason? I'm just really confused at why the long wait and my doc won't explain. She told me as soon as we found out it was cancerous that I would get to start a nice high dose as soon as the RAI was over since it was cancerous and they want to keep you slightly hyper. I called to get the new prescription and now her nurse says that I have to wait the eight weeks. I told her what the doc said and she said she would call me back, and when she called back she said they would let me go up to 75 mcg, but have to wait eight weeks for blood tests and another change. No explanation. Anyone no the reason so I can feel better about the fact that I still have to feel blah for another 2 months?thanks for the support and answers!

Seri said:

Doing ok
I like that everyone is willing to talk on this board too. I'm doing alright. Sunday was the first day that I woke up without a ton of pain. Since then I have done pretty well, just very fatigued and sore by the late afternoon. I don't feel well today, but I think I have caught a bad cold or allergies with a really bad sore throat (that the dr said could be RAI caused) on top of everything.

I got the scan done a week ago. Got the results yesterday. Neck lit up and chest, but they aren't too worried that it metastasized since it was symmetrically on both sides. Everyone is just kind of scratching their heads, and I am curious more than worried.

I did the thyrogen shots and was so grateful to have that option. I've been pretty hypo before and was miserable and I didn't want to go through it again. I have 4 kids under 10 yo and a husband in dental school, so I have to maintain some kind of energy or everything falls apart. My meds are still too low, so it was still really hard, but it would have been impossible if I had nothing. I'm sure in a lot of situations, going off meds would be fine, and maybe even better.

I haven't experienced RAI without thyrogen, so I guess I can't compare the recovery, but I never went off my meds. I went in for a shot Monday and tuesday then had the rai Wednesday and off the lid thursday. The shots made me a little woozy, and slightly tired, but not much of an effect. My appetite finally came back at the end of last week, but my taste buds must be fried cause I always feel like I have a burnt tongue and nothing tastes good or normal. Anyway, not sure I helped at all. Good luck and if you have any other questions feel free to ask.

Finnegan1 said:

LizP
I start the fresh foods only diet tomorrow, and go off of my med. so the RAI will be in a month or so? Do you have any advice on this, the diet, tips for taking care of myself . . .
Also, thank you for posting how you are feeling this evening. It's a comfort to read that you are doing well. Also lets me know what to expect.
Did I mention that for some reason I am so nervous about this? I can't understand why, and I have trouble talking to my husband about it.
Ok, I think I'll quit while I'm ahead here. Thanks for sharing.

LizP said:

Finnegan1 RAI & LID diet
Hi,
Sorry I didn't respond sooner, I just saw your post. Here's a few tips that helped me on the Low Iodine diet. I'm not much of a cook, I normally work long hours, so the simpler the better for me. There's a low iodine cookbook on the Thyca website that has lots of recipes. If you're into cooking, you may want to prepare some of the dishes now and freeze them before you're off the meds long. For me, the staples were things I could grab and go, or make quickly. Also, the diet is pretty limiting, most processed foods aren't allowed because you can't tell if they contain iodized salt.
•Breakfast:
baked potatoes or baked sweet potatoes that I could pop in the microwave and cook in 5 minutes (just don't eat the skins).
Egg whites scrambled or in omelets. (you can get the egg whites in the milk type containers) I would add sauteed chopped onions, peppers and tomatoes.
• Snacks:
Fresh fruits. Whole and the cut up fresh fruit salads in the produce section. (not jarred)
Motzo crackers
fresh air popped popcorn
unsalted almonds
• Lunch, I purchased fresh dried cranberries and non salted sliced almonds to add flavor to the veggie salads. (no spinach). I also used the bagged salad greens to save time. (You'll be tired, so anything to make things easier is good)
• Dinner: I was only allowed 3 oz of meat per day, so I usually had this for dinner. My husband cooked a chicken and made chicken salad with balsamic vinegar, oil celery spices and cranberry. This was great when I was too tired to cook. I also got the uncooked Purdue thin sliced chicken breast cutlets. 4 of the cutlets were less than 16 oz, so each was approx. the right size serving when cooked.
• Mrs. Dash comes in several flavors, helped spice up/change up the taste of chicken and egg whites

I had my RAI 4 weeks after the Thyroidectomy. My TSH were high enough to have it 3 weeks afterwards, but the Dr felt 4-6 weeks was optimal. This is my 6th day in isolation, 1 more to go. Can't wait for this stage to be over.

LizP said:

good news! a clean scan!
After 2 months of thyroid cancer ups and downs, it's great to get good news. I went for my body scan on Wed. and nothing abnormal showed up. My Dr. was great. He got back to me with results just a few hours after the scan. Now it's just a matter of getting my hormone levels normal and having blood tests quarterly to check the tg levels. Hoping and praying that this chapter is closed... This board has been a great resource. Thank you all for sharing your stories and experiences.