# Less than 15 millicurries?



## JPGreco (Mar 2, 2012)

Hi all, me again...

Just like my surgery thread, I'm interested in RAI (since it is my most likely course). My nuclear therapy place has figured that I am due for 11.5mci of RAI. This is based off of my uptake scan I assume. I have no signs of cancer so its not like they are blasting me to eradicate everything. I have not had my consult to see if the goal is hypo or trying to stabilize.

However, I'm curious about the results anyone has experience with a low dose like this. I've seen a few 100mci doses from some of you, but not too many low doses (or at least haven't found them). If this is my course of action and the goal is hypo, I'd rather have enough to finish the job and not have to go back a bunch of times (why I prefer surgery).

Any input on such a low dose for a Grave's patient with no signs of cancer?


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## Andros (Aug 26, 2009)

JPGreco said:


> Hi all, me again...
> 
> Just like my surgery thread, I'm interested in RAI (since it is my most likely course). My nuclear therapy place has figured that I am due for 11.5mci of RAI. This is based off of my uptake scan I assume. I have no signs of cancer so its not like they are blasting me to eradicate everything. I have not had my consult to see if the goal is hypo or trying to stabilize.
> 
> ...


How was it established that you have no signs of cancer? You started a new thread and I can't remember! LOL!


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## webster2 (May 19, 2011)

I am curious too about no signs of cancer. How was that established? My risk was 5-20%. I am not sure how they deduce that! Did you have an FNA? Graves can skew the results of an FNA. So, I declined, twice.


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## JPGreco (Mar 2, 2012)

No problem Andros. My concern for this thread is more about the RAI. I'm just trying to get the info I need and create threads that may gather information into a single thread that can help in searches (I'm experienced with forums).

I don't have a 0% cancer risk as all cysts can be cancerous. Just all the imaging done does not show anything that resembles cancer. The cysts are neither hot or cold and have no solid structure. That reduces the chance of it being cancer to a rather small percentage. That diagnosis also created the recommended dosage of 11.5 millicurries. I've seen some of you who have been diagnosed with cancer having doses up to 100 millicurries.


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## JPGreco (Mar 2, 2012)

However, this is also why I would prefer surgery. If I do have cancer it is most likely still confined to the thyroid and complete removal would be preferred. I'm just covering my basis with info on both surgery and RAI.


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## joplin1975 (Jul 21, 2011)

JPGreco said:


> I've seen some of you who have been diagnosed with cancer having doses up to 100 millicurries.


Yes, but that's an apples to oranges comparison, I think. I had 100...they wanted to give me 150, actually. But the goal was to not only destroy the remaining thyroid cells, but also any pesky travelers that had wandered off to other areas of the body.

With you, they are just trying to knock out enough of it so it stops troubling you.


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## JPGreco (Mar 2, 2012)

I understand that Joplin, that they are just gonna try to nuke me into a hypo state. I was just saying that in response to Webster and Andros who had asked me about a cancer diagnosis.

My real question in this thread is searching for people with low dose RAI ablation and their experiences. Like I said, I really don't want to keep going back for RAI, especially if such a low dose won't really accomplish the goals.


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## webster2 (May 19, 2011)

RAI seems like it will put you into a hypo state no matter how much you receive. I think everyone takes replacement after. I do agree with you that having it over and done with in one shot makes the most sense.


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## midgetmaid (Jul 22, 2010)

My doctor prescribed 25 mci, but it must not be an exact science, because at a follow-up, she was reading my chart aloud and I had received 26.9. I was hypo in less than 4 months. Since I had a toxic nodule and Graves, her goal was eradication.

Renee


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## JPGreco (Mar 2, 2012)

Thank you Renee. Did you suffer any side affects of the RAI?


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## midgetmaid (Jul 22, 2010)

I didn't have any direct side effects from the RAI, but I did have choking episodes almost every time I ate or drank. I don't remember how soon afterward that started. It took a while to resolve.

Renee


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## miltomeal (May 17, 2011)

Hello JP!
Had 12.6 MCI on May 6, 2011. Seemed to be going well until a few weeks ago. My endo and i think i have had graves for most of my life (now 38, so advanced graves?). We thought we had it under control, but last blood test results show that my thyroid may be growing back after 5 months on same dosage as the TSH was moving down still. reduced my dose of armour a little and we will see in another 6 weeks or so what those tests may show. 
I knew this may happen, found out too late to make a change to what i had taken, but it is a little hard to deal with. My endo and another endo i saw at the u. of colorado teaching school said they would not have given me anything under 15mci.

Do you think you have advanced graves? have had graves for a long time? 
I do know that Andros had RAI 3 times...

Good luck! and i will be looking into surgery if the thyroid is growing back!


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## JPGreco (Mar 2, 2012)

miltomeal,
Thank you so much for that post. It basically covers most of my concerns. I understand that the thyroid can grow back. Also, I would say that I don't have a mild case of Grave's, though it hasn't been 100% confirmed its Grave's though blood tests suggest it. I've had symptoms for at least 6 years that I can recall, so I would think I've had it longer. I think I may have gotten it cause of a severe case of acute tonsillitis that I went through, so if that was the trigger, its been 9 years (I'm 31 in about a month). This gave me some ammo for my consultation with the nuclear doctor. I will at least consult with them to see what their back up plans are for various situations.

I have my appt. with the Endo tomorrow morning to discuss options. A waste of my time really as my options are RAI or surgery. I have a place that will do the RAI for free as I qualify for their program. So all that's left is contacting hospitals to see if I qualify for theirs.

Renee,
Thank you for your post as well, it is always nice to know what others have gone through just to be aware.

Miltomeal,
Good luck with everything. That really sucks that its coming back. I hope you can get in for surgery and that it all goes well.


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## JPGreco (Mar 2, 2012)

Well my endo suggests more than what the nuclear doc wanted. She said to push to 14, maybe even higher depending on the discussion with the nuclear doc. She wants to make sure we get it.

Looks like RAI since she wants it done NOW... lol
She's apparently really concerned about it so I'm gonna go for the RAI and if I need anything else down the road, its surgery.

Thanks for your help everyone. I gotta schedule the RAI


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## Andros (Aug 26, 2009)

miltomeal said:


> Hello JP!
> Had 12.6 MCI on May 6, 2011. Seemed to be going well until a few weeks ago. My endo and i think i have had graves for most of my life (now 38, so advanced graves?). We thought we had it under control, but last blood test results show that my thyroid may be growing back after 5 months on same dosage as the TSH was moving down still. reduced my dose of armour a little and we will see in another 6 weeks or so what those tests may show.
> I knew this may happen, found out too late to make a change to what i had taken, but it is a little hard to deal with. My endo and another endo i saw at the u. of colorado teaching school said they would not have given me anything under 15mci.
> 
> ...


RAIU would settle the mystery. I hate this for you!


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## Andros (Aug 26, 2009)

JPGreco said:


> Well my endo suggests more than what the nuclear doc wanted. She said to push to 14, maybe even higher depending on the discussion with the nuclear doc. She wants to make sure we get it.
> 
> Looks like RAI since she wants it done NOW... lol
> She's apparently really concerned about it so I'm gonna go for the RAI and if I need anything else down the road, its surgery.
> ...


You have a good doc; she does not want you to kick the bucket. If you storm and go into vascular collapse, that is all she wrote. Listen to your doctor.


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## miltomeal (May 17, 2011)

I have the same thought as Andros. RAIU - which is the uptake scan of the thyroid.

JP, have you had this done?

Best wishes man! and i do think your endo is doing the right thing by discussing this stuff with the nuclear med dept.


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## miltomeal (May 17, 2011)

JP,
just saw your other thread and understand the answer to my question. Good luck! I am interested in your progress!


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## JPGreco (Mar 2, 2012)

Haha, yeah, no problem.

I'm actually a pretty good candidate for RAI ablation cause of my uptake scan being so high. I will be posting a new thread most likely once it is done documenting the procedure and experience for posterity's sake... lol
or maybe to help others that are going through what we went through...


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## JPGreco (Mar 2, 2012)

Also, I found out originally the nuclear doc said 8mcg. Then they went up to 11.5 to make sure. Then the endo went up more to 14. I have no idea what dose I'm getting, but they said anything under 25mcg there is no isolation protocol. Just the basic conditions (avoid contact with pregnant women and children and don't sleep with anyone). Fortunately for that last one I have nobody to sleep with... lol
I actually scheduled it for monday cause I have a 2yr olds bday this weekend and then I get 5 days before a wedding... Jam packed. I should have done this MONTHS ago.


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