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RAI on the 25th and nerves galore

Seri
Posts: 14
Joined: Aug 2010

Hi all!
I have been reading the posts here for a bit, and decided to finally sign up and ask some questions and get some support from people who know what I am going through. Just reading your posts have helped a lot.
A little of my story: I was scheduled to have a partial thyroidectomy July 14th, due to a multinodular goiter that had been bothering me for 2+ years. During the surgery, they found it to be cancerous (papillary carcinoma) along with several other nodules on both lobes of my thyroid, so it turned into a total thyroidectomy. I got to find out it was cancer when I was in the fog of waking up from surgery and heard the nurses asking who I was and what surgery I had done, and heard them reply that she had just had her entire thyroid removed for cancer. It was a kind of an unsettling way to find out. It has been quite the roller coaster and a lot harder to deal with (especially emotionally) than I thought. (As many of you probably agree, years of being told that thyroid cancer is not a big deal can make finding out you have it even harder to deal with emotionally since then you feel like everyone thinks you're making a big deal out of nothing.) I am a mom of 4 kids under 10 and my hubby is in dental school and my parents live 2 days away. I asked my mom to come out and help, which at first she said she would do, then it was excuse after excuse which made me feel really unloved and unsupported, and she has caused me more stress than anyone else. She's still coming to take care of the kids when I go through the RAI (mostly because I have no other options), but she's told me that she's leaving as soon as possible after the scan is over the next week and I can safely be home. Right now, I am just dealing with everything pretty much on my own. My hubby and I had a few rough spots, and I know he's having a hard time with it too, so we are just make sure to talk out our issues and he's been good when he can be here, but life doesn't stop even when you don't feel good, so he can't be here all of the time. Thanks to the thyca website (not my docs, go figure) I found out about the thyrogen shots, so I brought them up at my doc appts and my insurance approved them, so I don't have to be completely hypo right now, but my endo wouldn't put me on a very high dose (or it just hasn't really kicked in yet, I don't know), so I'm still tired and emotional a lot, but at least somewhat functional thank goodness. The LID is going ok, other than my body feeling really weird and I figured out my calcium levels were getting low and I had to find a supplement that was allowed (again, something my docs didn't clue me into). My treatment is Aug 25, with the shots on Aug 23 and 24. We live in a tiny 3 bed 1 bath house, so there's no way to stay at home (I think it's insane that they send you home, by the way) so I am staying in the Hospitality House for a week (better safe than sorry). My question is for all of you that has been through this. How long after the RAI were you able to get back on your meds and start to feel normal? Did it take a few weeks (like it says on the meds) to feel "normal" again, or was it faster? I am just trying to figure out how much help I am going to have to try to find. I would appreciate any feedback anyone might have, and I apologize for being so long winded! I guess I had more to vent than I thought. Thanks in advance!

veronica57
Posts: 98
Joined: May 2010

The first time, I had the RAI treatment, I was off of the levothoroxine for a month in order to prepare for the treatment. I was tired all the time and I stayed in bed a lot. It made my taste buds wack and everything tasted awful. The second time, I had the thyrogen injections also. I was tired some but not as bad as the first time.

My cancer mestastisized into my lungs and my doctors didn't really keep me informed of everything. I had to keep calling to find out the results of the rai treatment. They would tell me that all the cancer was gone, when they knew it was still growing in my lungs. So keep after them. I wish you the best. Good luck.

1nathaliakarina
Posts: 13
Joined: Nov 2009

I also had my Thyroid removed for Papillary Carcinoma with 1 lymph node. Only the did not take out the Lymph node, they just gave me a real high dose of RAI. When I had my first RAI treatment I was off my meds for 2 weeks and I experinced what is called a muscle breakdown. I practically was in bed all day long for 2 weeks. I returned taking my meds. the next day after RAI. It took me about one week to feel better. I was away for 3 days, just to be on the safe side, since I have 2 little ones. In December I had my follow up scan and I had the Thyrogen shot. I wish I knew about it the first time. I had no side effects and it did not interrupt any of my plans and I functioned just fine. Always think positive and you will be just fine. Always remember each one is different and we might react different than others. But, have faith and you will be fine.

I wish you the best of luck and yes always ask questions. Make sure you are on top of all your lab work and results. What seems normal to doctors might not be normal to you.

nasher
Posts: 507
Joined: Apr 2010

I honestly can say since my RAI treatment i havent really figured what normal is (may 5 2010) they gave me 175 mCi of radiation.. dont know how much they plan to give you

I do have a few other medical issues in my life and I am wondering how many of them were agravated by the RAI treatment.

being said I would go through it again if needed.

no matter what you do you will be nervious

if they havent told you bring LOTS of sour candy that you like (multiple types) it really helps protect your salavary glands from the excess radiation.

issues i have that i think may have been agravated/caused are
1) dry mouth.. probably caused by some salavary gland damage
2) metalic taste in mouth ... they say it will go away in a year or less...
3) eyes... i were glasses and normaly every 3-4 years i need a new perscription.. i got a perscription prior to my RAI treatmennt and i think i already may be needed to get my vision checked.
4) this one is VERY HARD to say.. slight loss in hearing i can not say for a fact how much i lost or if i actualy lost any.. also had hearing surgery around that time (stapadectomy) but i believe that i have lost SOME not alot of hearing.

there are lots of little things that some people say may be or may not be cause of RAI.

I wish you luck and remember you WILL beat this thing.

as for normal... well its one day at a time... they wont tell me till december if they think i have gotten it all knocked out or if they may have to do more at a later time.. till i know i am CLEAR of thyroid cancer i dont think i will be normal

Seri
Posts: 14
Joined: Aug 2010

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.

MLG
Posts: 52
Joined: Mar 2010

Like others have said...everyone experiences going hypo and radiation differently. Here is my version, which I hope you won't have to experience.

I tried to go back to work as a CNA in a hospital 2 weeks after surgery. (I actually felt great physically.)My doctor warned me that that is the time people start to notice the effects of not having their medicine. Well, he was right.

Maybe if I had a sit down job I would have been fine, but I worked 4 hrs, two days a week for 2 weeks and couldn't even handle that...I paid for it the next day.
My arms were so sore I couldn't hardly raise them up. I then got a drs note not to go into work until after my radiation.

I had to be off meds a total of 6 weeks before radiation and as the weeks went on it got worse, and worse and worse. (I had a dose of 150 because it was in my lymph nodes also.)
It wasn't that I slept all the time, but I was extremely, extremely fatigued. My muscles ached all over. It took everything I had just to wash dishes and then I was down on the couch again.

I gained 10-15 lbs by the time it was all done (and I wasn't hardly eating).

During the week of radiation I was home. My husband took off work to be here when my daughter came home from school. She is developmentally delayed but knew that she couldn't go past a TV tray we put up in the doorway to the living room.
That week of radiation, I was nauseated and had to switch antinausea meds to find any relief, which made me extremely tired.
My face puffed out the last couple of days and it looked like my eyes were swollen.

The dry mouth was excessive and took over a month to get better. Hard candies will be your friend.
I had metallic taste w/a couple of foods.
And I cried on and off because the fatigue was overwhelming.

I went on meds after my radiation and within a couple of days I could tell I was feeling better.
My voice is still hoarse at times and I will get sore throats more than usual.

Hopefully, you won't experience it as badly as I did.

nasher
Posts: 507
Joined: Apr 2010

as for sour candies.. whatever.. get a selection. I did some atomic fireballs and such and sour gummy fishes as well as sour patch kids and some other things.. just look for sour.

food tastes ok just like its heavly salty but i have mostly gotten used to it.. its just an aftertaste that lasts for me

LizP
Posts: 17
Joined: Aug 2010

Hi Seri, I hope the RAI was ok for you. Did you get more and more fatigued as the days went on waiting for the treatment? Did you experience any negative side effects?

I am scheduled for RAI on Sept 8th. I had a large nodule removed on July 27th, which was cancerous. I had The thyroidectomy was on August 10th.
I've been on the LI diet for a couple weeks now and am more fatigued. (But I've also been working long hours at work). I'm a little anxious and concerned about when I will "hit the wall".

Seri
Posts: 14
Joined: Aug 2010

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!

lilmonkeyshine
Posts: 10
Joined: Oct 2006

my endo started me at 125 after my treatment after 6 weeks tested and raised it so on and so forth I am now taking 250mci everyday they have to find what is right for you and it takes time took me a long while before i started feeling normal as they say again just takes a bit of time to find your right dosage

Finnegan1
Posts: 21
Joined: Sep 2010

How are you after treatment today? I apologize if it's too soon for this. I am starting the diet tomorrow and will schedule my RAI for early next month. I am a bit anxious, but love that everyone on this board is willing to discuss and respond. I am so sorry for any of you going through this alone. But always remember God's with you even when "friends" forget to call.
Liz, I hope you recover well. I do have a question.
Does anyone have any thoughts on whether the healing process/after RAI is easier with the Thyrogen injections or with the diet and going Hypo? Thanks for taking time here guys.

Seri
Posts: 14
Joined: Aug 2010

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
Posts: 21
Joined: Sep 2010

So glad to hear. What an amazing woman you must be to keep your attitude up and keep up with your family! My husband and I haven't had children- Yet. I was diagnosed in late April, and had my TT July 14th
There were a few doctors who said wait for at least 1 year after scanning before even trying for children, and that puts me at 32 yrs. old. Not too bad I guess.
I went through OU medical center in Oklahoma City, a teaching hospital. Everyone is wonderful there, and there was never a shortage of fellows/Dr.s asking how I felt during recovery and the weeks following.
Right now, I am waiting to find out if I go Hypo, or if the injections will be covered. Thank you for replying. Makes a girl feel not so alone!

LizP
Posts: 17
Joined: Aug 2010

Seri,
Glad you are doing better. I had my RAI yesterday and am also experiencing weird metallic tastes and a burnt tongue feeling. I understand your being curious over the the body scan. Now that the operations are over, I want this whole ordeal to be finished. Wish and hope it will be that easy. Best of wishes to you for a speedy and total recovery.

Finnegan1
Posts: 21
Joined: Sep 2010

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
Posts: 17
Joined: Aug 2010

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.

Finnegan1
Posts: 21
Joined: Sep 2010

Good luck to you and congratulations! You are out of isolation today then? I looked on the THYCA site and found the cookbook. Thank you thank you thank you for telling me about that. You wouldn't believe how much better I felt after seeing so many simple recipes!. And I am tired alot, you're right about that, so freezing things was a helpful tip.I have a grocery trip tomorrow, so thank you for your tips there as well. I will be getting the small chicken cutlets, cranberries, almonds, etc . . .
I really hope your isolation is well and truly behind you now, and wish you all the best. Keep us updated on the outcome of follow ups? Thanks again. So nice to feel not alone in all this. Much love and prayers.

LizP
Posts: 17
Joined: Aug 2010

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.

Finnegan1
Posts: 21
Joined: Sep 2010

Yay for clean scans! I have a scan coming up, just don't know when yet. Been on the LID for almost two weeks, and they still have not scheduled me. I don't want to go through it again, but it will be worth it if my scan comes back clean too. Congratulations girl, and keep us all posted with updates!

Seri
Posts: 14
Joined: Aug 2010

Yay! I'm so happy your scan was clean LizP!
Hopefully they'll do your Scan soon Finnegan. Are you hanging in there alright?

My scan was odd. The dr took a week to call, told me my neck lit up, which is normal and that my chest lit up. He said it lit up symmetrically on both sides and he isn't worried about it, then a week later my endo called and said I needed to come right in for some blood work to see if my prolactin is high since my chest lit up and they want to know why. That was a week ago and I haven't heard anything. I'm not as worried as I am curious. Anyone heard of anything like this? Should I be more concerned? Thanks for any responses :)

Finnegan1
Posts: 21
Joined: Sep 2010

I haven't heard of anything like that either, and am curious to know what you find, if you feel like sharing.
Hanging in there, I seem to be, my husband certainly spends Alot of his time out in the shop. Guess I'm a bit hard to get along with these days. I even had to quit the low-dose anti-depressant because of the red food coloring, but I had already begun weaning myself off of that. it's just different with no thyroid replacement And no anti-depressant! I feel 13 years old again with all the hormone surges and emotional junk that went with it. just not the energy!
Let us know what you find about the scan, and thank you for keeping up with me!

nasher
Posts: 507
Joined: Apr 2010

yes I still have the metalic taste in my mouth.

from what my DR said it can last for up to 1 year (or longer) but most people forget about it.

I have noticed though that it has one little benifit. I dont want to put salt on ANYTHING cause of the taste

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