[JaneG]

#1058791

I am new to this site and would dearly love some input! I am scheduled for RAI this Wed (Oct 26) As my endo is less than forthcoming with info I’ve been searching the internet. My first time with Grave’s was 8yrs ago and my thyroid rebooted with medication. It returned this summer so I chose RAI. I have no eye issues at the moment. I would greatly appreciate ANY and ALL thoughts/tips/info from others who have had RAI. Many thanks!

[Bobbi]

#1169998

Hi, JaneG, and welcome.

Any RAI that does not make it into your thyroid in the first 24 hours or so, is dissolved in body fluids, and excreted from the body. If you had an uptake and scan, you received a percentage uptake number. So, say it was 56%, what that would mean is that you could expect that your thyroid will take up 56% of the dose you are given. RAI is very soluble in water, so we eliminate excess amounts of it from the body rather quickly. But when you receive your dose, your doctor (or nurse/tech) will give you recommendations for how best to handle things so that those around you are not exposed to UNNECESSARY radiation. Typically we are told to use plastic eating utensils, paper plates, flush the toilet twice, double wash sheets, etc. I emphasized the word "unnecessary" above, because the amount of radiation others get exposed to is not harmful, all by itself. But radiation exposure has a cumulative effect over our life times, so minimizing unnecessary exposures is good practice.

There is, typically, soreness in the throat for a week or so after the RAI starts to work. It is, after all, damaging tissue in the body, and there is inflammation associated with it. I was not particularly bothered by the soreness — it was minimal for me. But others have reported more intense soreness than I experienced, so there is obviously a range involved.

Also, approximately one week after RAI, as thyroid cells have been damaged beyond repair, you will experience more hyperness than usual. This is because the damaged cells release their stored supplies of hormone into the body — we call this episode "dumping" here on the board. The cells are not making new hormone, so this isn’t like thyroid storm (where the cells continue to produce hormone while they dump it), but it can make you more uncomfortable than you would like for a few days. Your doctor may prescribe something to keep you more comfortable during this time.

Then, you simply have to put on your cloak of patience and wait for the process to fully work. Your doctor will recommend a time for you to come back to check your thyroid levels (typically around 5 weeks or so). We typically suggest that if you start to experience bothersome symptoms of hypothyroidism, that you call and see if you can move that appointment up. It is best not to go too hypo, if you can help it. That said, I have experienced minor levels of hypo (up to a TSH of about 13) and felt fine — but I think on the gazelle to lounge lizard scale of life, I tend to land on the lizard end, so I don’t mind minor levels of hypo. ; )

Wishing you good luck and good health soon,

[JaneG]

#1169999

Bobbi – thank you for your quick reply! Between you and other posts on this forum, I have more info than any doctor is giving me.

[gatorgirly]

#1170000

Jane,

I was in the same boat as you. I love my endo but he didn’t explain the RAI process and after-effects very much. However, both the radiology tech and the radiologist at the hospital where I received my dose of RAI were so helpful and friendly. The radiologist refused to give me the pill until he had time to review my charts and speak to my physician, since my physician is not affiliated with the hospital. I felt good knowing that he really took the time to review everything before handing me a pill that would change my life and my body. So hopefully you can ask some questions of the staff/physicians wherever you are taking the RAI pill. Good luck!

[bwoods23]

#1170001

Hi Everyone,
I had RAI done about two months ago. The first blood test I took about 5 weeks after found I was still quite hyper. I felt great. Now it’s the exact opposite. I’m very down, I’ve put on about 10 pounds and I have a sensation in my hands that I can only describe as "sausage hands". It’s not comfortable wearing my wedding rings. Is this somewhat normal? I have an appointment with my Endo in less than a week but when I call her, she doesnt seem terribly concerned with my symptoms. Am I being dramatic? I’m typically and upbeat and happy person, I hate how I’m feeling.

[Kimberly]

#1170002

Hello – I don’t know if your doc’s office schedules your labs *before* your appointment…but if not, it would be worth calling them to see if they can get you in for a quicker set of labs just to make sure you aren’t headed hypO.

Hopefully, others who have been through RAI will chime in with their experiences, but remember that YOU are the customer here. ” title=”Very Happy” /> If you aren’t feeling well, you deserve to have your symptoms taken seriously!

[JaneG]

#1170003

It’s been 24hrs after RAI and so far so good. I had 12 mci which I understand isn’t a large dose. The radiologist said that the digestive tract and salivary glands absorb some of the RAI. So, I’m drinking lots of ginger tea to ward of possible nausea and sucking on sour candy to flush out the saliva glands. I feel a bit tired and my vocal cords are a bit hoarse. I worked myself up into a worried mess prior……now I feel more matter-of-fact about it all. Thanks for the support!

[Bobbi]

#1170004

Your reaction is completely normal. We are so stressed while we are trying to make up our minds which treatment option to do, that we often find the results somewhat anticlimactic: especially with respect to RAI.

Keep in mind that in a week or so, you will be more hyper than ever when the thyroid cells start dumping hormone. It is only at its worst for two or three days, typically. But it can throw some folks off when they aren’t expecting it.

I hope you feel much better, and soon.

[bwoods23]

#1170005

@Kimberly, thank you. I did have my labs done but had to postpone my doc appointment because of a death in my family. I begged to be seen as soon as possible as these symptoms are really bothering me, but the soonest they could see me was 2 weeks. I can’t wait to find out the results of my tests.

[JaneG]

#1170006

It’s been 1 week today and I’m feeling fine with limited effects. The first couple of days I was tired. Day 3 my throat and salivary glands were a bit sore. My stomach was a bit off. Morning of day 6, I woke up in the middle of the night with a pulse of 120 so took one of my beta blockers and all was fine. Was that hormone "dumping"? Not sure but not a big issue. That’s about it. I did drink a LOT to flush out the radiation- ginger-lemon tea when my stomach was off – and sucked on sour licorace to keep the salivary glands going to flush those as well. So, now I sit and wait for my levels to fall. I’ve read other postings about weight gain as one works through the process of going hypo and adjusting the meds. So, I joined Weight Watchers as I DO NOT want to gain weight – seems a good, sensible program. So, I’m keeping fingers crossed!
Thanks for all the info – it was a BIG help last week!! ” title=”Wink” />

[luwa1]

#1170007

HI JaneG I enjoy reading your posts because our situations are similar . I had RAI Oct 25 and also received 12 mCi. Felt very tired for a few days but I feel pretty good right now. But I know I’m still hyper – very jittery, not gaining weight (and I should be with the way I’m eating). Scheduled to have labs done in 6 wks. Wishing you a smooth road!

[LanZamora]

#1170008

Hi Everyone

I just wanted to share tips
After the Treatment

Symptoms of the disease will improve slowly, beginning about two weeks after the treatment. Muscle strength improves, tremors and irritability lessen, heat intolerance improves, and sleep is more sound.

To prevent recurrence of the disease, enough radioiodine is commonly given to cause an underactive thyroid within six to 12 weeks following treatment. Once the thyroid becomes underactive, a single daily pill of thyroid hormone, T4, must be taken for life. Although most patients are completely cured, a few people will need a second treatment. Even if thyroid function returns to normal after radioactive iodine, there is a high likelihood that the thyroid will eventually become underactive.

Therefore, people treated with radioactive iodine must remain under the care of their doctor indefinitely.

I hope this helps you and hope for your health to get better

[JaneG]

#1170009

It’s been 2 weeks and 2 days since RAI and I have virtually NO tremors!! Now, I can actually take a pen in hand and write legibly, drink without my teeth rattling against the glass and put on mascara without fear of blinding myself. I still need the beta blocker for my high pulse and probably will for a while as that is my first symptom. I didn’t lose weight like I did 8yrs ago but over the past few years have gained a bit. Since joining Weight Watchers 10 days ago, I’ve dropped a couple pounds in preperation for the probable gain when I go hypo. Onward…..

[Bobbi]

#1170010

Wishing you well, JaneG.

[JaneG]

#1170011

Here I am 2 months post RAI and am I TIRED or what!! Other symptoms: so very cold, dry skin with some breakouts, dry hair, some hair loss and virtually no appetite. My endo didn’t want to see me until Jan but I requested labs done 10 days ago and TSH, T3 and T4 are all at rock bottom. I’m now waiting to get replacement meds. Weight Watchers is a great help to me as I do not want to gain weight (I didn’t lose any while hyper) so, when I do feel like eating, it is lots of vegies sans fat, lean protein, fruit and limited bread/starch. (no, I certainly didn’t eat like this over Christmas! I enjoyed every fattening bite!!)
I hope my posts help others as they navigate their own path with Graves’. ” title=”Smile” />

[Author]

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