[amy3820]

#1060374

Hello All!

I am having RAI on Thursday and I am a bit scared . I tried methimazole for 6 months, but it did not do well for me. I have tried to control my Graves’ Disease since 2012, but it doesn’t like to be controlled. I have a few questions for those who have done RAI.

How long did it take for your heart rate to return to a semi-normal state? Mine is really fast, even when I was on the methimazole.

Did anyone have a large goiter? Did it shrink at all after the RAI?

Any tips for after the RAI?

Thanks in advance,
Amy

[barbra]

#1182270

Hi Amy,

I was diagnosed in April 2013 and had RAI in July 2013. I had been taking beta blockers along with the Methimazole since the diagnoses so my heart rate was pretty much controlled. Does your doctor know about your heart rate?
I was treated with 24.2 millicuries of I-131 in the form of 2 Sodium Iodide capsules. The RAI itself was easy to do, just swallowed capsules and off I went. But I had to eat a special diet for 5 days before and stay away from everyone for 5 days afterwards. Since your procedure is tomorrow you’re probably very familiar with the rituals.
Once you’re able to go out again and see people, just do as you’ve always done, the best you can. Sometimes it’ll feel like you’ll never be right again, and we’ve all been there, but it’ll get better.
See your doctor, don’t be afraid to let him/her know if you think the treatment isn’t working for you. And keep up with your blood work.
I had a small goiter and it’s still there. Sometimes it seems that it shrinks and sometimes I can not only feel it but I can see it. So I don’t know if it will ever disappear, but I don’t think so. I am now taking Synthroid and for the first time I feel good again.

It’s OK to be scared. We’re all here to answer your questions and lend you some support along the way. We’ve all bitched and cried and muddled our way through.

Keep in touch and let us know how you’re doing.

Hugs.
Barbra.

[Kimberly]

#1182271

Hello – This board also has a search function (in the top right-hand corner of the screen), so you can run a search for “RAI”, “radioiodine”, etc. to read stories from other patients. (You do have to be logged in to use the search function.)

Were you every on beta blockers for your heart issues? These drugs are sometimes prescribed to give patients temporary relief from symptoms such as rapid heart rate. Beta Blockers can potentially worsen asthma and certain blood vessel conditions, so they aren’t prescribed for all patients…but this is at least worth a discussion with your doctor. Some patients experience a temporary worsening of hyper symptoms post-RAI, so just something to be aware of.

Take care!

[gatorgirly]

#1182272

I didn’t have a goiter by my thyroid uptake levels were off the charts, so I welcomed RAI with open arms. It took six months to finally work, but that’s pretty uncommon. Almost everyone feels hyper initially, mostly because you’ve been off the drugs, but extra beta blockers and a low dose of PTU helped me feel OK.

Your thyroid tissue will eventually shrivel up and be absorbed, essentially, and the goiter should go with it.

Are you not on a beta blocker? ATDs like methimazole can control hyperthyroidism but the heart rate issues usually require a beta blocker. My did, and I actually needed them for 18 months after I became euthyroid. I saw a cardiologist who said my heart was healthy, but something was telling my heart to keep beating fast even though my thyroid levels were normal. Eventually, it got the message

As for RAI tips – go grocery shopping in advance or plan to order a lot of delivery since you can’t go out for 72 hours. Drink lots and lots of water to flush the radiation, and plan to have some hard candies like lemon drops readily accessible for a possibly sore throat. Mine felt like strep. Have a project – like binge-watching an entire TV series or something more productive like a home improvement project. I also sat on my front porch and got plenty of fresh air.

Don’t be scared! They make you wait around for a little while after swallowing the pill to ensure you don’t have an adverse reaction and from there, you don’t even realize something is going on inside except maybe a sore throat.

[amy3820]

#1182273

Thanks guys! I am on 50mg of metoprolol 2x a day. It somewhat keeps my heart rate controlled.

Now my RAI has been cancelled. My blood work today is completely normal. My doctor thinks I maybe in remission, but my thyroid gland is still swelling. She is going to redo my blood work next week and then refer me to a surgeon if it is still normal.

Is it normal for the thyroid to continue to enlarge when the levels are normal. I am so confused about what is going on. She thinks that the normalization of my levels may have caused the side effects of the methimazole.

I am so frustrated. I finally felt like I was getting answers and now there are just more questions.

[Kimberly]

#1182274

@amy3820 – Wow, that had to come as a huge shock! We are fellow patients here, not docs, but you will *usually* see a goiter shrink as levels move into the “normal” range.

One thing to consider is whether your doctor is testing Free T4 and T3 in addition to TSH, as goiter can come with either hyperthyroidism or hypothyroidism. A TSH-only test might not give you all the information you need to figure out what is going on.

Hope that you can get some answers soon!

[ChristinaDe]

#1182275

Hi Amy ~ Interestingly, I also had symptoms that lingered on Tapazole even after my labs normalized & I was pretty confused and frustrated by the whole thing too (as was my dr, I think). It wasn’t until after I had my thyroid removed (for Graves’ & nodules) & then biopsied that I found out that I had de Querlain’s (sp) thyroiditis on top of the Graves’! So now I kind of believe that the reason I didn’t feel normal back then despite my labs saying I should was because of all the inflammation going on in my thyroid. I’ve been told this is unusual (to present w/ both thyroiditis & Graves’) tho. Anyway, the thyroiditis component made me feel terrible at the time but thankfully it’s not something like Graves’…it usually resolves on its own eventually & is limited to just the thyroid. Since I had TT because I wasn’t feeling better on Tapazole (and had multiple benign nodules), my thyroiditis ended that day & so now it’s more of an interesting story than anything else.

So I’m thinking that your dr may be a really smart one. You said that she wants to retest and if your labs are normal but you’re not that she wants to send you for an outside consult w/ a surgeon – I assume to help figure out why. I think that sounds like a reasonable & thoughtful plan. That said, I agree, it’s all pretty frustrating (I remember those days well)…and this stuff can get pretty complex w/ all our individual differences & presentations. I hope your symptoms aren’t too severe in the meantime & I hope they figure out why your thyroid is continuing to enlarge soon!

[amy3820]

#1182276

I think it just took a couple days to get used to the idea. I was scared, but geared up for the RAI. Now I am coming around to new opinions and possible surgery. I am thankful for an endocrinologist that is honest and is working with me. She seems stumped with the symptoms, but doesn’t write them off. She is awesome.

Kimberly, she does test FT3 and FT4. She says the TSH is not really reliable in someone with Graves. ChristinaDe, it is nice to know that someone else had weird symptoms. Sometimes I think I am going crazy or just a hypochondriac.

Thanks for the support guys! You have all made me a bit calmer. I will update after my blood work next week.

[amy3820]

#1182277

I am hyper again. I get the RAI done tomorrow morning. I am a little nervous, but glad that I am doing something. I will update tomorrow. I should have plenty of time since I am on quarantine .

[msgraves]

#1182278

Hi Amy,

I just got my RAI done this morning and I can tell you there’s nothing to be nervous about. Sitting there before the treatment, when you are talking to the doctor and signing the paperwork, can be a bit nerve-wracking. However, when you actually go in to take your dosage, it’s all a bit anti-climactic.

Best of luck to you!

Ms. Graves

[amy3820]

#1182279

I just took it this morning! I feel pretty silly that I was so nervous, it was anti-climactic, Ms. Graves. I feel a bit relieved now that I am done. Are you stuck in your room today? That is the worst part, I can hear everyone downstairs, but I can’t be around them. How are you feeling?

[msgraves]

#1182280

Hi Amy,

I’m glad to hear that your RAI went well and that you are all done!

I’ve holed up in the spare room and I’m watching Netflix and reading books and magazines to pass the time while my family stays downstairs. It’s only been a little over one day and I’m already feeling pretty lonely, though. My family and I will talk every once in a while from a safe distance or they will call my cell phone haha. I had a little throat soreness yesterday, but not much today. How are you feeling? Are you watching/reading anything good?

[amy3820]

#1182281

I am holed up in the master bedroom. I have been scrapbooking, reading, and catching up on homework. My throat was sore yesterday, it is just a little sore today. They told me it would be because I have such a large goiter. I have been switching between reading romance novels and murder mysteries. How long are you stuck on quarantine? They told me 2 days, but we are doing 3 just in case.

Amy

[msgraves]

#1182282

I was told that the first 2 days are the most critical and that after 2 days I can start spending more time near people, but still at a safe distance of 6 ft. away. After a week I’ll be able to go about things normally. I work from home for the most part, so I’m planning to spend the majority of the week in quarantine. I’ve heard so many different things from different sources, although I’m of course following the directions from my doctor. It seems like some people have been given more lax instructions while the instructions I was given are more conservative. It must depend on the dose and the physician.

[amy3820]

#1182283

I was told 3 feet away for 2 days and no one to sleep in my room for 2 nights. I quarantined myself for 3, because I have 3 children. They told me that once the radiation had passed through my body it would only be in my thyroid. So no thyroid to thyroid contact. I have just played it safe, but I do have to go to class on Tuesday.
I am feeling very hyper right now, hopefully this won’t last too long. I have my first blood work 3 weeks out. I hope you are still doing well.

[Author]

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