Rai Again? - Graves' Disease and Thyroid Discussion - Living with Graves Disease

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Rai Again?

Graves RAI

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#1 rmccorkel

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Posted 06 May 2013 - 07:14 PM

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Hi.

 

I'm glad I've found you. I've been reading the topics and have been learning a lot. I now need your help to think. Since the doctor's call, it has been hard to think properly. 

 

After an annual check-up, I've learned that my levels were

TSH 0.006 (range 0.450 - 4.500)

T4 free 1.98 (range 0.82 - 1.77)

PC didn't test T3 and told me to see an endo.

 

After seeing an endo, I was diagnosed with Graves and given 3 options of treatment (meds/RAI/surgery). I chose RAI and took it on April 12. 3 weeks later, I had another blood test and results are

 

T3 free: 7.6 (range 2.3 - 4.2)

TSH < 0.01 (range 0.450 - 4.500)

T4 free: 2.5 (range 0.82 - 1.77)

 

Over the phone the doctor suggested I might need a second dose of RAI, but I'm really uncomfortable with it. Something tells me I should go with medication and wait a little more to see how it will all kick in. In my mind, this way, I'll eventually go into remission. 

 

As for the symptoms, no eye problem, no sweating. Little shakiness and occasional fast heartbeat. Very sensitive, a cryer recently but still having a normal life (I guess). 

From all you have read and learned (I'm still digesting the much I have come across), should I try another RAI? I want to hear other opinions and experiences before I make up my mind. I'll also be learning more about Graves. 

 

In advance, thank you. 




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#2 Harpy

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Posted 07 May 2013 - 01:48 AM

If you do decide to go with the Meds (ATD's), then you'll probably only need a lower dose, your levels are high, but not excessively so, most start much higher.

Keep reading the different threads here and have a read through the Thyroid 101 section.

 

My partners levels were very high, on your ranges she was about 36 for FT3 and 6 for FT4, she chose meds and stabilised within 6 months, her symptoms were mostly gone, but it has taken 5 years for her TSH to return to normal, she's in the process of weaning down the meds for remission at end of the year, she'd do the same again if she had to.

Hers was one of the longer treatments, most tend to return to normal between 1-4 years.



#3 Misty

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Posted 07 May 2013 - 05:16 AM

Hi, from what I understand it takes several months for the radiation to kill the the thyroid gland, so it's far too soon to repeat the rai. Instead as you suggest you should have antithyroid meds to keep your levels under control.

 

Keep in mind that your TSH will remain low for a long time because the antibodies involved in Graves' influence it. The Free T4 and Free T3 are the levels to watch.

 

You might ask your quetion at the site of our medical expert Elaine Moore (Elaine-Moore.com). She had rai for Graves' herself. She has written books about Graves' and is up to date on the scientific research.

 

Bet wishes,

yvonne, remission since 2005



#4 Simon

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Posted 07 May 2013 - 03:02 PM

What dose of RAI did they give, were they trying to ablate the thyroid, or merely reduce the function?

 

Yvonne has the nail on the head with length of time for RAI to work.

The working presumption of most doctors is RAI works by damaging thyroid tissue directly, and whilst this is true it also stimulates production of various thyroid related autoantibodies.

Some people go hypothyroid long after the radiation has decayed to insignificant levels. It is also recognized that the dying gland may release thyroid hormone, so it was customary when RAI was introduced to use Potassium Iodide (KI) to suppress thyroid function after treatment. More recently this may be antithyroid drugs. See thyroidmanager.org chapter on Diagnosis and Treatment of Graves' disease for a discussion of RAI.

http://www.thyroidma...graves-disease/

My understanding is that waiting 18 months after one dose, before trying the next is not unreasonable. But it might depend on symptoms, and also the original dose of RAI. Certainly DeGroot - author of the chapter at Thyroid Manager - is the expert on dosing RAI having spent a lot of time considering the evidence, and indeed generating a fair bit himself, so he's definitely the author to read on the topic.

Either way as long as the disease is reasonably controlled by medication of some sort (ATD, KI), then waiting a while is unlikely to hurt, and might make further RAI unnecessary. If you can't control the disease well with medication, you need to do something else, second RAI or surgery, but most people can control it that way.



#5 rmccorkel

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Posted 07 May 2013 - 03:38 PM

Thanks Simon and all others for your replies. 

 

I was given 15 and it was to ablate. The doctor at the hospital where I took RAI (it wasn't with the same organization that my doctor belongs to) said blood tests should be done 5 weeks, 3 months and 6 months after the dose to determine whether it was necessary another dose. My doctor, however, chose 3 weeks and 5 weeks (as she saw the blood results in 3 weeks doesn't show change) and has talked about re-taking it. I asked her when and was surprised to hear sometime in August. I took RAI mid April so 6 months is in October. As we were talking on the phone, I didn't want to discuss with the doctor that from the little I know, it's too soon. I'll wait the appointment for that. In any event, I decided to hear other doctor's opinions. I have 2 appointments upcoming. In the meantime, I'll keep on reading about it. From what I have read so far, most people go with ATDs and get to control it. So, I'm leaning towards that path. 







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