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#1 July 20, 2020 16:03:49

CeeVee05
Registered: 2020-07-20
Posts: 1
Profile  

RAI scheduled - having second thoughts!

Hi everyone,

I was diagnosed with Graves (December ‘19), 9 months pp. I was on MMI for 6 months, but ended up going Hypo with my liver enzymes more than doubling. My endo had put in a requisition for the RAI treatment to be scheduled, and suggested it due to my inability to process MMI and the fact that my husband and I want to try and expand our family. Unfortunately, due to the pandemic, surgery is not on the table, and would take too long to schedule which would mean being on MMI for a prolonged period of time, which my dr does not want me to do.

I have been reading posts on this site and I have a few questions:

1. RAI isn’t recommended for people who have TED. How does one know they have TED?

2. Has anyone had a successful pregnancy after RAI?

3. I haven’t been told to follow a low-iodine diet (just to avoid salt and seafood). Is following a LID important for a successful ablation?

4. This might be a silly question, but does RAI increase your chances of getting certain cancers?

Unfortunately, my dr is on vacation until August 8, and my RAI is scheduled for next week (received the call last week, when my dr was on vacation). I haven’t been able to get in touch with the hospital, but am going in for a scan (pill tomorrow, scan the day after) and am hoping to talk to someone who could answer my questions.

Thank you!

Cat

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#2 July 23, 2020 10:53:47

Kimberly
Online Facilitator
Registered: 2008-10-14
Posts: 4182
Profile  

RAI scheduled - having second thoughts!

Hello - We're fellow patients here, and this is a decision that you definitely want your doctor to weigh in on. Is there any chance that there's an on call doctor while your own provider is on vacation? A few general comments…

1. An experienced opthalmologist can help you determine if you have TED, and if the TED is severe enough to either avoid RAI or do do a course of steroid therapy in conjunction with the RAI.

2. We've heard from many patients who have had successful pregnancies after RAI, but it *is* recommended that you postpone trying to conceive for up to a year after treatment. (Some docs say 6 months).

3. Most docs don't recommend the LID for RAI treatment for hyperthyroidism - it's primarily used for those undergoing treatment for thyroid cancer. A few docs do recommend this, though.

4. Research on thyroid cancer and RAI has been very mixed. Will include a couple of links below to different studies.

JAMA: https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/2737319?resultClick=1

ATA (summarizes a previous study) https://www.thyroid.org/patient-thyroid-information/ct-for-patients/april-2020/vol-13-issue-4-p-7-8/



Kimberly
GDATF Forum Facilitator

…through nature's inflexible grace, I'm learning to live…
– Dream Theater

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#3 July 27, 2020 18:36:54

Big_goit
Registered: 2020-07-11
Posts: 8
Profile  

RAI scheduled - having second thoughts!

Hey! I got diagnosed in spring 2019 and had a “total” thyroidectomy in August 2019 but the small amount of tissue left in my neck grew exponentially fast and I am back to where I started a year ago with a goiter and hyperthyroidism so I'm looking into treatment options yet again! I just made the decision to get RAI treatment since I have tried the other two treatment methods (medicine and surgery). I have some concerns too as it seems scary to get my thyroid radiated lol. My main concern is fertility issues and possibly increasing the risk of certain cancers. Obviously I can't advise you but this is a very common treatment and many people seem to come away from it with no long term issues. Also, I know of two people in my life who got RAI and had multiple successful pregnancies. But it's always a good idea to research! I hope you find the answers you're looking for and good luck on your upcoming RAI treatment and overall thyroid journey

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