# RAI 3 years ago...NOW I'm having symptoms?



## steviedork (Jun 10, 2008)

Hi all,

I was diagnosed with Graves' in 2005, and treated as though that was my problem for 3 years...based primarily on TSH and some of my other numbers. I saw a new doc, who took one look and said, "Duh. It's Hashimoto's." My thyroid was abladed with RAI in 11/2008. I went on to have a baby, get things settled, figure out my levothyroxine dose (although that's taken some adjusting yet) but about two months ago, I started to feel swollen around the thyroid area. Now, most days I feel like I swallowed an egg! It's uncomfortable and has me worried. I have an appointment with my RE Friday, but in the meantime...anyone dealt with this? Anyone have an idea of what it could be? I can't tell if it's swollen on the outside, but it sure feels like it on the inside!

Any insight would be greatly appreciated! I thought after 3 years I was sitting pretty...

Thanks,

Stevie


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## Andros (Aug 26, 2009)

steviedork said:


> Hi all,
> 
> I was diagnosed with Graves' in 2005, and treated as though that was my problem for 3 years...based primarily on TSH and some of my other numbers. I saw a new doc, who took one look and said, "Duh. It's Hashimoto's." My thyroid was abladed with RAI in 11/2008. I went on to have a baby, get things settled, figure out my levothyroxine dose (although that's taken some adjusting yet) but about two months ago, I started to feel swollen around the thyroid area. Now, most days I feel like I swallowed an egg! It's uncomfortable and has me worried. I have an appointment with my RE Friday, but in the meantime...anyone dealt with this? Anyone have an idea of what it could be? I can't tell if it's swollen on the outside, but it sure feels like it on the inside!
> 
> ...


Hi there Stevie and welcome!










Apparently, your RAI was not complete. I had to have it done 3 times.

At this point, I would be very concerned about cancer and my advice is to get RAIU (radioactive uptake scan.)

Also, get TSI done. And some the others listed such as Thyroglobulin Ab.

TSI (thyroid stimulating immunoglobulin),TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.

You can look this stuff up here and more.........
http://www.labtestsonline.org/

About TSI, Thyroid Stimulating Immunoglobulin

Normally, there is no TSI in the blood. If TSI is found in the blood, this indicates that the thyroid stimulating immunoglobulin is the cause of the of a person's hyperthyroidism. 
http://www.medicineonline.com/topics/t/2/Thyroid-Stimulating-Immunoglobulin/TSI.html

This is probably why you have not stabilized on your Levothyroxine as one day the thyroid puts out and another day it doesn't.

Definitely would not consider another RAI; strongly advise surgery just in case there is undetected cancer.

Pathology will go over the gland w/a fine tooth comb.

What is the acronym RE?


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## steviedork (Jun 10, 2008)

Wow...thanks so much for all the info! That would really suck if it didn't take, but it *would* make sense as to why my TSH and other numbers were fluctuating all the time. If they want me to do RAI again, I'll definitely look at all my options. I'm not comfortable with the idea of being radioactive again, anyway, let alone having to be apart from my 18 month old or even exposing her to ANY of that. Plus, there's the risk of cancer...phew. A lot to think about. I'm sure my RE will send me in for more tests/scans. RE = Reproductive endocrinologist. The original endo I saw was the one who had no clue it was Hashi's, and then I went to the RE because I have some other issues, and he saw it was Hashi's and thought RAI--more so than managing via meds, which is what the original endo recommended--was a better option. He's pretty great, and I have no doubt he'll help me choose the best options possible. I just hope it's not some form of cancer and that it is something like a goiter instead. I am just VERY glad I have an appointment this Friday.

Thanks again! You've been extremely helpful! hugs1


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## Andros (Aug 26, 2009)

steviedork said:


> Wow...thanks so much for all the info! That would really suck if it didn't take, but it *would* make sense as to why my TSH and other numbers were fluctuating all the time. If they want me to do RAI again, I'll definitely look at all my options. I'm not comfortable with the idea of being radioactive again, anyway, let alone having to be apart from my 18 month old or even exposing her to ANY of that. Plus, there's the risk of cancer...phew. A lot to think about. I'm sure my RE will send me in for more tests/scans. RE = Reproductive endocrinologist. The original endo I saw was the one who had no clue it was Hashi's, and then I went to the RE because I have some other issues, and he saw it was Hashi's and thought RAI--more so than managing via meds, which is what the original endo recommended--was a better option. He's pretty great, and I have no doubt he'll help me choose the best options possible. I just hope it's not some form of cancer and that it is something like a goiter instead. I am just VERY glad I have an appointment this Friday.
> 
> Thanks again! You've been extremely helpful! hugs1


Thank you for explaining the acronym. When it comes to medical and people's health, I am a bit wary of acronyms for good reason.

That said, "Honey Bunny; I sure hope you don't have cancer either but I do know that at this point it needs to be looked into. Especially after a 3 year old incomplete RAI." I think you see the wisdom in that.

And, "if" you do have the surgery, you may be down for a day or two but you can still hold your little one and all of that.

Please bring us an update on your appt. Friday. I hope it is "all" good!


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