[gayle]

#1017874

I was diagnosed a week ago and received my RAI dose today. So far no side effects. Wondering how long it will be before I notice any difference in my symptoms. Am on beta blocker to slow heart – which made a huge difference. I happened upon this website today and found so much information. THANK YOU!!!! I had felt all alone. Any advice for a newbie? I have no idea what to expect in the coming months. Forewarned is forarmed.
Thanks so much for being there.
Gayle

[Bobbi]

#1061403

Hi, and welcome to our board.

Don’t be surprised if, about a week from now, you feel much more hyper than normal. The beta blocker you are on will probably act to mask some of the symptoms, but as thyroid cells die off, they released stored supplies of hormone all at once. They are not making "new" hormone, so this period of enhanced hyperness is limited typically to a few days, but ifyou haven’t been warned about it, it can be worrisome.

You will likely also experience a soreness in the throat area. Some folks (like me) don’t notice it much, but for others it can be quite sore.

Gradually, you will start to feel a bit better. It takes some time for RAI to do all of its "work" — a few weeks typically. Your doctor will call you in for more blood tests after a certain amount of time, to double check the progress, and hopefully to get you started on replacement hormone as you go hypothyroid.

Then, there will be a slow-ish (to us, anyway) process of trying to find the best dose of replacement hormone for you. Replacement hormone IS thyroid hormone: it is chemically identical to T4. So too much will make you hyper again, and the doctors try to avoid that by double checking things frequently at first (every six weeks to three months, ususally).

I do hope you are feeling better soon.

[Victor]

#1061404

Hi Bobbi,
I just had RAI this morning as well…
It would be interesting to compare our experiences over the next few weeks, don’t you think?
So far all I have felt is the following:
My pulse started getting faster for a little while around 4:30, then slowed back down as the bp medication kicked in I think. I am on Propranolol 40 mg 3xday.
Also, I felt a warrmth in my stomach, and my breath was warm and moist, like you feel when you’re getting sick, but temperature normal.
My endo is going to have me start on Tapazole a week from now, which she says will help to keep me from going into thyroid storm. I have not heard of this being done in any of my online research, so you might want to ask your doctor about this if you’re worried about symptoms worsening before they get better.
Victor

[gayle]

#1061405

Thanks so much for your response. The unknown is the worst part of this. It is now 48 hrs post RAI and so far I have only experienced some body itching and small bumps on my hands. I have allergies so that might just be from the stress. No throat issues but my face puffed up some around my eyes. The last 2 nights I actually slept thru the entire night. ” title=”Very Happy” /> YEAH!!! The hardest part has been not being able to care for my sick kitty. My husband has been doing a great job!
My pulse has remained the same. I am taking controlled release beta blocker. My endo wants me to take the anti thyroid (meth…) starting tomorrow, TID. Said that would be for the next few months. This surprised the oncologist but said it would be OK. I really don’t have too many symptoms. Racing heart, can’t sleep thru the night, and personality chg. Not as patient as I used to be. I sure hope that changes. I want my old self back. I don’t like being snippy.
Thanks again for your response. For a long time I just thought my symptoms were nothing. I never thought it would be so serious. It really helps to know that I am not alone.
Gayle

[snelsen]

#1061406

Hi Gayle, welcome to the site! You can begin by reading the thread under the one you answered. Lots of good information there. LOTs! Also, use the search engine, type in RAI,and you will get tons more. I think superdaves’s last post will be very helpful to you about the future, from his recent experience. There are some really great posts from the facilitators on this subject. Welcome to this site.
Shirley

[gayle]

#1061407

Thank you Shirley for your support. I am unclear on one point. My endo told me the goal of the RAI was to kill of a portion of the thyroid – hoping to get me back to a normal state and my radiologyOncologist said that I got a childs dose. Is this possible? Everything I’ve read says that the entire gland is killed off and that I would go hypo. In a perfect world…….. I hope this is true as I don’t look forward to a lifetime on meds………… but whatever it takes to get back to a more normal state of living.
Gayle

[Victor]

#1061408

Hi Gayle,
I just had RAI yesterday, and so far just some cold/allergy symptoms. My palpitations have gone away though, and I’m breathing easier. I have been on propranolol 40 mg 3xday, which was really helped in keeping my heartrate down but I was still dealing with the palpitations. That was my main reason for choosing RAI over meds. My endo is starting me on tapazole next week, so I’ll see how that goes. Keep us posted on your progress and hope you conitnue to feel better. I hope you are seeing the light at the end of the tunnel!

[susan]

#1061409

Hi Gayle,
I was where you are now just a few short months ago. I felt a little soreness after RAI and the first day or so, alittle nauseous but within a week,the heart slowed down(I was on the contrtolled release betablocker-2 perday and sometimes 3!) and I have finally weaned myself off of them. I feel a weird feeling at the base of my throat when I yawn but I can live with it. My first set of labs one month post RAI were so good I was not considered hyper and NOT given synthroid. Took my next set of labs a few days ago and feel fine. The weight I lost when I was hyper came back(UGH-back to the dieting) and I am finally back at the gym after 3 months away.
This website saved my sanity. Knowing that people here "got" me, made an amazing difference in my outlook. Keep reading and be patient(I could use some of my own advice sometimes). I had a place that answered ALL my questions better than any doctor has and I am forever grateful. I am glad that you are so proactive and supported in your GD journey. Welcome!
~Susan

[gayle]

#1061410

Good morning Susan & Victor
Thanks for much for your notes. It is wonderful to have you all for support and information.
Took my first meth…. this morning and am starting to feel a little woozie. Very mild though. Not sure what to expect. Have gotten through the first days after RAI with no problems whatsoever. The 80 mg CR propanalol has my heartbeat back to normal and my BP is low – but right where I like it. So far so good. My appt is for 6 wks unless I have problems and I don’t expect any. I am a very positive thinker so that helps alot. I agree with you………. this website has answered so many questions that I had and several that I hadn’t thought of. My endo hasn’t been very helpful regarding what to expect. Actually my cardiologist helped the most.
One questions………. I want to plan a road trip in the next few weeks and wonder if that is wise. I’m in Fl and want to drive to Mich to visit family. I won’t be alone but will do most of the driving. Any thoughts?

Thanks again for all of the responses. You guys are fabulous!!! I know that I am not alone.
Gayle

[PattiMeg]

#1061411

Hi there! Just wanted to drop a quick note with my thoughts on the RAI process. On 2/21 I had RAI. By the middle of May I was officially hypo and started on 75 mcg of Synthroid. The endo’s plan for me is to have blood work every 8 weeks and tweak the Synthroid until I find the sweet spot. My first blood work post Synthroid will be middle of July.
All in all, I am feeling great! Compared to the hyper madness of Graves, I am exponentially better. I am back to work full time, riding my bike to work, going to the gym every day. I am definitely tired at the end of the day, but I will trade a little fatigue any day for the awful anxiety, tremors, muscle weakness, emotional misery of Graves.
I’ve had some eye puffiness but my eye doctor tells me the eyes are fine, the swelling is part of the thryoid stabilization and should settle down.
Back in January I thought my life was over. Well I was wrong!! I am taking it one day at a time, and I learned some great lessons thru all of this – that I have friends and family that love and care for me, that if I say No to things it isn’t the end of the world, and that I needed to slow down the pace a bit. I am convinced that my stressful lifestyle was the trigger for the Grave’s.

Comment about your road trip – after the RAI I actually felt worse instead of better for a few weeks. So you may want to be aware of the possibility that your symptoms could worsen while you are visiting Michigan. I would check with your doctor to see what he/she thinks. I know that I was pretty sick and couldn’t have done any long distance driving .

I hope your recovery goes smoothly…this website has been such a blessing! I have learned so much from everyone and it feels comforting to know that I am not alone in this.

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