# Hi ho, Hi ho, off to RAI I go....



## minli (Aug 2, 2011)

~waves~ It has been quite a while since I last posted here. I got trapped in the depression I suppose a lot of us go through while trying to determine the right way to attack this illness.

A bit of a refresher, I started my formal Graves journey November 29th of 2011, but had been feeling sick for a lot longer than that indicates. My former GP almost killed me when he ignored the ultrasound and RAI U/S results and told me nothing was wrong, fast forward 8 months and I was in full blown storm with FT4 sitting at 6.22 (normal range high level for lab was 1.77). That got me in with my first Endo who spent the last almost 11 months shoving Methimazole, PTU, Methylprednisolone, and Prednisone at me while all along promising me he could get me to normal range.....he did....for a week.

For the record, I fired him!! In the past ten plus months I have been accused of not taking my meds, having a mental illness (that was fun), and generally have been treated as though I was a basket case simply for asking questions. And being as fragile as almost a year of Graves being out of control even while medicated will make anyone, I lost my way for a bit and believed everything he told me. And then I realized he was full of it and something had to give 

I went to three surgeons who all agreed that it would be a big risk to my heart (I now have sinus tachycardia....yay again) and it would be very risky to remove my thyroid given its size and how cystic it is among other complications due to other health issues. So I dealt with that and started on the hunt for a new Endo. Whom I love!

My new Endo did levels and announced on my first visit that with a FT4 sitting at 2.08 I was in acceptable range for RAI therapy. And get this, she left it up to me! I am off of Methimazole completely now, still dealing with withdrawal a bit, and am on 50mg Prednisone for the next 7 days to prepare for an updated RAI U/S next Thursday/Friday....the following Tuesday after the results are in and they know how much to hit me with, I'll go in to take the big pill 

I know it is not going to be super fun times, but I am so happy for some forward progress. I have been tying so hard to fight this with meds for the better part of a year and feel worse than when I started this journey.

Anyone who has been through RAI therapy want to give me a rundown on what to expect?


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## Octavia (Aug 1, 2011)

Wow - that's quite a story! I have not been through RAI therapy for Graves, but I truly wish you the best. Forward progress is good!

:hugs:


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## Andros (Aug 26, 2009)

minli said:


> ~waves~ It has been quite a while since I last posted here. I got trapped in the depression I suppose a lot of us go through while trying to determine the right way to attack this illness.
> 
> A bit of a refresher, I started my formal Graves journey November 29th of 2011, but had been feeling sick for a lot longer than that indicates. My former GP almost killed me when he ignored the ultrasound and RAI U/S results and told me nothing was wrong, fast forward 8 months and I was in full blown storm with FT4 sitting at 6.22 (normal range high level for lab was 1.77). That got me in with my first Endo who spent the last almost 11 months shoving Methimazole, PTU, Methylprednisolone, and Prednisone at me while all along promising me he could get me to normal range.....he did....for a week.
> 
> ...


When are you going for the RAI?? It's a piece of cake. You may have a thyroxine dump and that could be uncomfortable but actually the pred should help ease most of the discomfort.

You will have to be restricted to a certain degree. No hugging babies, pets, pregnant women. Stuff like that. They will tell you what you have to do.

I am soooooooooooooooooo glad to hear from you; long time no see!! And very glad you have made this decision.

I had RAI. And I am good to go.










Let us know when the big day is!


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## minli (Aug 2, 2011)

Yeah my new Endo warned me that I should have a bag packed for the hospital just in case things get nasty around the 1-2 month mark.

I go in for updated RAI U/S next Thursday/Friday, the hospital will have the results by Monday, so the Tuesday after next is when they are saying I should be ready to go with the big pill 

I am so excited to finally be doing this. The steroids are kicking my you know what a bit right now, but it will be so worth it in the end!


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## Andros (Aug 26, 2009)

minli said:


> Yeah my new Endo warned me that I should have a bag packed for the hospital just in case things get nasty around the 1-2 month mark.
> 
> I go in for updated RAI U/S next Thursday/Friday, the hospital will have the results by Monday, so the Tuesday after next is when they are saying I should be ready to go with the big pill
> 
> I am so excited to finally be doing this. The steroids are kicking my you know what a bit right now, but it will be so worth it in the end!


Yes it will, dear one! It won't be long but what life will be good again. Not right away, but soon. Your body will have a lot of healing to do.


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## minli (Aug 2, 2011)

Endo said I was the first person she ever saw that cried happy tears when RAI was mentioned.

I am so excited to finally be on the way to getting off this roller coaster. It has been far too long a ride


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## Octavia (Aug 1, 2011)

I'm curious...when they do RAI for Graves, do they try to kill the whole gland, or just enough to make it "normal-ish"? Did they say?


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## minli (Aug 2, 2011)

from what I understand they look at the uptake and scan to determine how much needs to be ablated and how strong of a dose of I-131 needs to be given.

I know for as stubborn as my thyroid is I have been warned that my dose will more than likely be in the I-131 range for cancer patients, it's the same drug/isotope just more of it. The goal for me is to become hypo and start treatment for that so I have a lesser chance of rebounding 

But that is just me, I am not sure if it works that way for everyone.


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## Octavia (Aug 1, 2011)

I see. Thanks for the clarification.


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## midgetmaid (Jul 22, 2010)

I had Grave's and a hyper-functioning nodule, so I was given 26.9. I was told hot nodules can be stubborn. The dose totally killed my thyroid and I'm on Armour. I didn't have any problem with the RAI.

I only wish my TSH had been tested more frequently afterward. It climbed to 42 and I was miserable.

Renee


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## minli (Aug 2, 2011)

I have several nodules as well on both sides, no fun


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## minli (Aug 2, 2011)

I had my updated RAIU/S done October 11-12. When I went in for the dreaded scan (I really hate that thing), the radiologist called for the RAI treatment pill before I even got off the table.

After only being off meds for 8 days my 4hr uptake was 48% and 24hr was 67%, the doc also noted the size of my thyroid was too big to ignore, and though they prefer 3wks off meds, he could see why my Endo was not willing to follow their rules.

At 2:37pm on 10/12/2012 I was given 22 mCi of I-131 and sent home.

I handled it well for the first few days but I am completely miserable now. Did blood today and have an apt Friday.

My goiter is huge, swallowing is no fun, my eyes are killing me, I'm having to take the beta blocker round the clock, sweats are back, low grade fever (it gets to 101 I go to the ER screaming storm, its been sitting 99.4-99.9 range), I am exhausted, and my body hurts.....everywhere.

My endo said it sounds like I am dumping, which is good, but dangerous since my body doesn't like to play nice with the meds. We've already started me back on 30mg of methimazole and I am waiting for my script for prednisone to get filled......yup, I am having no fun


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## Andros (Aug 26, 2009)

minli said:


> I had my updated RAIU/S done October 11-12. When I went in for the dreaded scan (I really hate that thing), the radiologist called for the RAI treatment pill before I even got off the table.
> 
> After only being off meds for 8 days my 4hr uptake was 48% and 24hr was 67%, the doc also noted the size of my thyroid was too big to ignore, and though they prefer 3wks off meds, he could see why my Endo was not willing to follow their rules.
> 
> ...


Yes; you are dumping. Are you itching too? Glad you are on the methimazole for now and the pred will help your eyes. Put cooling ice packs (or frozen pea bags) on a towel over your eyes for relief.

This is NOT fun from me to you! This is a horrible disease this Graves' stuff!


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