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Old 10-17-2004, 09:15 AM   #1
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Feelings after RAI

Hi!
Has anybody here at the boards felt better after RAI treatment for Graves?
How long did it take you to become hypo?
Has any of you had your TED (thyroid eye desease) worse?
No need to take RAI twice or more?
Could RAI be ineffective?

Sorry for so many questions - i need your help and advice!
About a month has passed since I took RAI and no results at the time being - thyroid is as large as it was and i'm definitely hyper. My doctor says i shouldn't use my ATD because it helps undestroyed thyroid cells to work. And you know, it's not a good thing to be hyper...

And a personal remark to K9mom: i've been on ATD for 2.5 years and despite being euthyroid my gland increased thrice for that period and no drugs can *kill* my goiter. That's why i took RAI as the only alternative for thyroidectomy.

Thanks in advance and sorry for my poor English.

Last edited by DimkaSh; 10-17-2004 at 09:42 AM.

 
Old 10-17-2004, 09:57 AM   #2
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Re: Feelings after RAI

Hi!! I took RAI Feb.12,2004 and became hypo with the ATDs. I can't say that I feel any better.

Of course when you have this stupid doctor that won't give me any t4 supplement, that really makes things worse. My levels have come up some since I tapered off the PTU.

I can't say that the RAI made my eyes worse. It could be from the Graves that made mine worse.

It does vary from each person how long it takes to kill the thyroid. I think it works slowly.

K9mom will know much more than I do about RAI.

I took ATDs a few days after I took the RAI. My doctor said it was okay.

Are you having bad hyper symptoms?
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Old 10-17-2004, 09:58 AM   #3
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Re: Feelings after RAI

I forgot to say I became hypo July 2004
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** RAI ablation for Graves disease 2004**

 
Old 10-17-2004, 10:09 AM   #4
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Re: Feelings after RAI

Thanks Betty
I heard your story while surfing the boards.
Frankly I don't have bad hyper symptoms - just palpitations and rapid heart rate. When I was first diagnosed with graves in april 2002 my hyper symptoms were much worse. But when I was taking ATDs i became hypo for 2 months - that was really the worst time in my life. I'd rather be hyper than hypo

But now i'm really worried the RAI could be of no effect.
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Old 10-17-2004, 10:11 AM   #5
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Re: Feelings after RAI

I had RAI done in November of 2002. I had a goiter and TED at the time. To answer your questions with my experience:
It took a very long time to feel better after having the RAI. Actually I only got to where I felt GOOD about 2 months ago. I went hypo quickly. By January of 2003 I was hypo & every three months I would go back to my doctor and have to have my dosage of Levoxyl upped. I started at 100mcg in January of 2003 & was up to 200 mcg by February of 2004. I started supplementing the Levoxyl with 5mcg of Cytomel in April & have since started feeling a lot better & accepting that my thyroid is finally regulated. My TED got MUCH better after RAI, but I understand that for a lot of people it does not. My goiter also went away. Some people do have to take more than one dose of RAI for it to become effective.

 
Old 10-17-2004, 10:15 AM   #6
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Re: Feelings after RAI

Oh yes now I remember you. All I know is it can be a watch and wait situation.

When I took the ATDs, I believe I was hypo most of the time because my negligent doctor didn't tell me that I should reduce them when my levels became normal

I just don't see why you can't take the ATDs. K9 mom will be here this evening. I don't know what time that would be where you live. She will surely find your post.

Those palpitations and rapid heart is not very good for you. Are you taking a beta blocker? You need that to calm your heart down.
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Old 10-17-2004, 10:17 AM   #7
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Re: Feelings after RAI

Quote:
Originally Posted by zekat
I had RAI done in November of 2002. I had a goiter and TED at the time. To answer your questions with my experience:
It took a very long time to feel better after having the RAI. Actually I only got to where I felt GOOD about 2 months ago. I went hypo quickly. By January of 2003 I was hypo & every three months I would go back to my doctor and have to have my dosage of Levoxyl upped. I started at 100mcg in January of 2003 & was up to 200 mcg by February of 2004. I started supplementing the Levoxyl with 5mcg of Cytomel in April & have since started feeling a lot better & accepting that my thyroid is finally regulated. My TED got MUCH better after RAI, but I understand that for a lot of people it does not. My goiter also went away. Some people do have to take more than one dose of RAI for it to become effective.
Thanks Zekat, your information really makes me feel better Would you be so kind to tell me some figures: e.g. your gland volume and the dose of RAI used?
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Old 10-17-2004, 10:24 AM   #8
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Re: Feelings after RAI

Quote:
Originally Posted by Lady50
Oh yes now I remember you. All I know is it can be a watch and wait situation.

When I took the ATDs, I believe I was hypo most of the time because my negligent doctor didn't tell me that I should reduce them when my levels became normal

I just don't see why you can't take the ATDs. K9 mom will be here this evening. I don't know what time that would be where you live. She will surely find your post.

Those palpitations and rapid heart is not very good for you. Are you taking a beta blocker? You need that to calm your heart down.
Thanks for your concern, Betty - i'm still alive only because of taking betablockers.. While surfing the boards i found out that most of you use Armour and Synthroid to fill up lack of your Ts. In Russia we use only L-Thyroxine for this.. Will anybody tell me what's the difference between Armour and Synthroid ???

P.S. It's already evening here in Moscow 21:30 p.m.
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Last edited by DimkaSh; 10-17-2004 at 10:25 AM.

 
Old 10-17-2004, 10:26 AM   #9
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Re: Feelings after RAI

The Armour has t4 and t3. The synthroid has t4 only. I have heard many good things about Armour here.
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Old 10-17-2004, 10:29 AM   #10
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Re: Feelings after RAI

Quote:
Originally Posted by Lady50
The Armour has t4 and t3. The synthroid has t4 only. I have heard many good things about Armour here.
Ah i see, Armour is a combo one.. We have Euthyrox here - it also contains both T3 and T4.
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Old 10-17-2004, 10:32 AM   #11
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Re: Feelings after RAI

Zekat I will never have RAI again unless I have a good doctor. Many people are against this but I am going to treat myself. Ordered my Armour and doing online bloodtesting. Tired of doctors. They think just because your levels are in the range that your okay. Silly huh?
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Old 10-17-2004, 10:38 AM   #12
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Re: Feelings after RAI

Quote:
Originally Posted by Lady50
Zekat I will never have RAI again unless I have a good doctor. Many people are against this but I am going to treat myself. Ordered my Armour and doing online bloodtesting. Tired of doctors. They think just because your levels are in the range that your okay. Silly huh?
Sorry that you're tired of docs, but my endo doesn't think only about normal ranges of hormones - she really tries to help to improve my condition. And much thanks to her for that. As to the second course of RAI - i also won't have it if my goiter is killed by the first one. But if it wouldn't - i got no choice. I don't want to get operated on thyroid for graves.
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Last edited by DimkaSh; 10-17-2004 at 10:38 AM.

 
Old 10-17-2004, 10:46 AM   #13
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Re: Feelings after RAI

I have the same feeling as you about getting operated on for graves. I definitely don't want surgery unless it is completely necessary. I am so glad you have a good endo. I'll bet you will hang on to her.

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Old 10-17-2004, 11:56 AM   #14
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Re: Feelings after RAI

Goiter is simply a swollen thyroid gland. One can have a goiter when they are hyper AND when they are hypo. If you are overdosed on ATD's your thyroid will swell in an attempt to trap more iodine in order to make more thyroid hormone....this could possibly explain what happened to you while you were on ATD's.

There is really no set time period for the RAI to work. It can take a year for all of the destruction to happen to the thyroid gland. Most doctors say wait one year before attempting another RAI.

RAI stimulates antibody production, this is why some people have worsening eye disease after taking RAI.

The state of being HYPO also worsens the eyes (the edema associated with HYPO).

There is a very wide range considered "euthyroid". Everyone with Graves (through trial and error) will have to narrow down that range to find their own individual "set point" where they are free of symptoms and feel good. You will fare much better if you request copies of your lab reports and insist that they test your Free T4 and Free T3...THESE are the labs that need to be within the normal range, and at a point where you feel well again. Simply testing within the normal range is not good enough. Best of luck to you!!

Synthroid is L-thyroxine, synthroid is just one brand name.
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Old 10-17-2004, 09:44 PM   #15
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Re: Feelings after RAI

Thank you, K9Mom. But what should I do if I feel good only when my levels are a bit higher than normal? And when I'm even slightly hyper thyroid swells more.
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