[azroses2322]

#1070957

I did not have any pain with the Thryoid scan or RAI. In both cases you are given a pill. For the scan they take readings at 3 intervals over the next 24 hours. From this they can calibrate the RAI dose. For the RAI they give you the pill and send you home. In the time of confinement after RAI, I was told to drink lots of water and flush twice with each trip to the bathroom. So the ice water was pretty much all I got down. I was tired and wanted to sleep. I had no dietary restrictions but since I had been so sick from being hyper, I was not interested in eating — I don’t know if that is normal. If she can and wants to eat you may want to be prepared with what she likes. She will need something to entertain her while not sleeping. You will need to use disposable plates and cups and plastic utensils for her to eat with. You will be given all of the guidelines when she gets the treatment, You can also ask the questions in advance so you know what to expect and how to plan for it.

[lupecardena]

#1070958

there is no soreness or swelling of the neck? will she be moving around a lot? i’m learning as we go but there is a lot i still don’t know..any tip no matter how small is helpful.

[lupecardena]

#1019338

my daughter is thirteen and on call to get a thyroid scan and radioactive treatment. We just found out that she had graves disease two weeks ago. since then she was put on PTU and then her endo specialist took her off because it causes liver disease in children now we are sited as urgent and waiting for the soonest available appointment for RAI..will she be in pain after treatment? what is easiest to eat? what will she need while she is confined to her room?

[ewmb]

#1070959

Hi,
I am two and half weeks out from my RAI. I did have a sore throat and a swollen neck. It wasn’t so bad that I couldn’t eat or swallow. Dr. had warned me to get something to suck on, candy etc. and gum and to keep drinking a lot during those first few days so the radioactivity wouldn’t settle in my salivary glands. I didn’t have too bad of a time the first few days but had a bad patch during the middles of the next two weeks. Seemed like all the symptoms that I have had during the past two years flared up as the radioactivity was working. Be prepared for that if she has been sick for a while. Lots of attention and plumping of pillows etc. will be much appreciated if that is what your daughter likes when she isn’t feeling well. Hopefully it will go very well and she won’t have any trouble. I do feel a lot better in the past few days than I did in the past two weeks. Glad that I had the RAI.

EWMB

[catsmum]

#1070960

I too have a teenage daughter with GD, it can be tough on you both. We too are waiting for ‘the call’ to go into hospital, although Cat is going in for a thyroid biopsy, not RIA at the minute, so I know how you must feel.
Your little girl is really lucky to have such a thoughtful, caring & loving Mom.
You are both in my thoughts & prayers.
((((((((((BIG HUGS))))))))))
Love Wx

[Hopeful23]

#1070961

This can be a scary process i know. I was terrified. However the treatment itself really is not that bad. Im in week two. I didnt have the soar throat or the salivary gland swelling. I WAS LUCKY. i wasnt confined in my room. my uptke scan was almost 100%. i couldnt eat or drink off anyone. couldnt make food for anyone or plate it. I have been really tired esp the first week. My fatigue has improved i do still have my days. i just pray u have the same exp. good luck. ur in my prayers.

[DebbieLBurton]

#1070962

I had the Rai also and it was a interesting journey. The worst part for me was not being able to do things for my family and I missed my friends! My journey back to "normal" took many months I also hit a record high for levels with my doctor but it didn’t become a storm so I was fortunate. It takes lots of time and there is no quick fix for your daughter. Remember to give her lots of understanding because she will feel like she is losing her mind at times!

[Kimberly]

#1070963

Just a thought, but if the PTU was working, have you spoken to her doctor about Methimazole, which is another anti-thyroid drug? While you still have to carefully monitor liver function with Methimazole, I believe it was only PTU that is no longer being recommended for treatment in children.

The important thing is for your daughter and you to be comfortable with your choice. All of the treatment options (antithyroid drugs, thyroidectomy, RAI) have their pros and cons.

Best of luck!

[lupecardena]

#1070964

thank you all for your help. i did ask and they wont give her the prescription because she has to be off the medication in order to do the RAI and it would be hard for her to go on the other drug then quickly get off..this way she will be ready when they call to go get the scan. However, we are now waiting for the insurance and they are dragging there feet. So she is bouncing of the walls and back to having serious mood swings. lol and the late nights are back lol (ughh).

[mamabear]

#1070965

Please don’t be pressured into doing the RAI. I know someone here will comment about how long you have to be off the Methimazole before doing RAI. I know it’s not long at all.

Dr’s tend to go the RAI route because it’s easier than trying to tweek Tapazole(methimazole) or PTU. You have the right to say no about the RAI treatment after she has the scan.
ONce the scan is done she can go on Methimazole as well and try to feel better with that first. If it doesn’t work than she can always do the RAI. Again don’t let them make you think you don’t have a choice.

The ptu was working so the methimazole could very well do the same as the ptu. Please do more research before choosing any route. Just because they say she must do it this way or she must have this doesn’t nessesarily mean she must. Don’t let them give up on the Methimazole.

They should have tried her on the methimazole after she got off the ptu. It also has it’s pro’s and con’s but you need to have ALL of the info presented to you and to her. RAI or Tapazole should both be considered, keep calling them and asking them questions.

She feels like crap because she is off all meds right now, so that might make your heart want her to have the RAI asap so she feels better faster. I can certainly understand that being a mother myself. But being a graves’ patient I also understand that the least invasive stuff I would prefer first.

[lupecardena]

#1070966

i have been researching as much as i can..i just feel like i’m not getting the time. i in less than a week she was diagnosed and scheduled for the scan and the RAI at the same time. they keep telling me she needs urgent care. she has a goiter that is very swollen…maybe that’s why . the thing is i don’t know and i ask as much as i can but she got sick going on PTU and got sick coming off the med. now she has a beta blocker to help blood pressure..when i talked to her doctor about going on the other med. she said that it also caused liver damage and she would not take the risk..then take her off quickly.

[Ski]

#1070967

They do both have the potential to cause liver damage. The most recent studies about kids and PTU were pretty scary, so I think there’s a big rush to take younger patients off and pursue other treatments. Still, the choice SHOULD be yours. You can test liver enzymes while taking methimazole to know whether liver damage is occurring.

That said, if you are interested in pursuing RAI, your daughter should not have a lot of concerns in the first few days after taking it. Most of us don’t have pain, or even feel very differently, right away. There is a phenomenon we call "dumping" that can come up a couple of weeks after RAI, due to the dying thyroid cells releasing the thyroid hormone they’ve been storing. It is typically a transient effect and over within a few days. Some doctors authorize the patient to take more of the beta blocker if they notice certain symptoms. That’s something to quantify and discuss with the doctor specifically, prior to the treatment, just in case. I never had any major effect from "dumping" after my RAI, so I know (at least for myself) that not everyone experiences it.

Disposable plates/utensils are usually recommended ~ and remember BOWLS! I nearly forgot, and I love soup. I would’ve been SO mad. ” title=”Very Happy” />

Here are the basic mechanics of what’s going on just after RAI ~ the thyroid takes up a certain percentage of the RAI (typically it should be the same percentage of uptake you get from the scan). The body excretes the rest, through the body’s fluid waste channels (urine, saliva, sweat). That lasts about 48 hours. During those 48 hours, you just want to make sure she doesn’t expose anyone else to the RAI that’s being excreted. It’s a matter of protecting those who do not NEED treatment. So, no sharing plates/cups/bowls, no kissing, limit touching. There’s only a TINY amount in the saliva and sweat, but overcautious is best. In addition, you want to minimize the amount time the excess RAI is stored in the bladder before being excreted. For that, the patient should drink lots of water and urinate often.

My doctor suggested getting gardening gloves (the kind with "knobby" things on the fingertips) so I wouldn’t freak out over every single thing I touched. That really did help. I had a new pair for each day, for three days, just to be sure.

One thing I would suggest you do right now is to touch base with the doctor who will provide the RAI dose (if you choose to pursue RAI as treatment). My doctor was literally going to give me the instructions moments before the dose. I had sent my family away and was about to be "sequestered" for several days, yet that was the moment he felt appropriate to tell me I should have all kinds of special things on hand. So I should shop within the first hour or two? I didn’t think so. Luckily, I already had a lot of the instructions before I went, from this very board. I would’ve liked to have the doctor’s list MUCH earlier, and it was rather astonishing to me that they had not thought to provide it ahead of time, so I always suggest that people ask for that as soon as they know this is the treatment they will pursue.

"Coming down" from hyperthyroidism can be VERY weird, but it typically happens pretty slowly, even after RAI. It can take six weeks just for the body to flush out the excess thyroid hormone that was in the bloodstream before RAI, so you may not see any appreciable changes in her behavior right away. There may be some hair loss, which is due to the fluctuating thyroid hormone, NOT the radiation. Our body protects itself from radical shifts in thyroid hormone by removing resources from hair and nails, and other non-essential parts of our body. Until her thyroid hormone levels are normal, AND STABLE, hair loss may occur. Typically it is not radical (not like chemo), but it can be startling. If you can, talk to your daughter about getting her hair cut short, in a style that doesn’t require much "fuss." That can limit the amount of hair she loses.

As her thyroid hormone levels drop, she will naturally travel through the normal ranges, and ultimately go hypothyroid, so you may see a period of time when all seems pretty well, but the goal of RAI is to destroy the thyroid, so keep careful track of her symptoms and make sure you get her blood tested as soon as you think she may have gone hypo. The sooner she starts on thyroid hormone replacement, the easier the transition will be. Look for four or five of the traditional hypo symptoms, happening frequently. Make sure you have access to a lab, whenever you feel it’s necessary to get her tested. Blood tests are really the ONLY way to know where she stands ~ many symptoms are the same, between hyper and hypo, so we can’t really trust our feelings when things are in such dramatic fluctuation.

I know this is a hard time for both of you ~ gathering information is the best thing you can do right now. Talk frankly with your daughter about what you’re learning. This is going to be a lifelong issue for her no matter what course you take right now. She will always need to be aware of her thyroid hormone levels and what she can do to keep them stable.

Let us know how it’s going!

[lupecardena]

#1070968

thanks! that helps i think I’m ready for this. i was even thinking of getting her walkie talkies lol.
i will keep u posted!

[catsmum]

#1070969

Hi,

Isn’t SKi just a Godsend when you need info? ” title=”Very Happy” /> I don’t know what I would have done without this board over the last couple of months.
Hope your daughter is doing ok, let us know what happens as regards her treatment.
Take care of each other,
Wx

[mamabear]

#1070970

lupecardena wrote:thanks! that helps i think I’m ready for this. i was even thinking of getting her walkie talkies lol.
i will keep u posted!

Is your dd ready? Does she understand or is she scared?
Have you spoken to her teacher about this and the school about days she would need to take off?
I am not sure of the rules of the forum about with someone under the age of 18 being on here but as long as you were on here I’m sure that we could support her as well if she wanted to talk here about how she feels. <—if that made any sense..i’m chasing kids right now so forgive me if I dont make any sense lol.

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