Upcoming RAI and Thyrogen Injection

[Shelly40]

I had 1.5 cm papillary cancer removed 5/14/2008.  The post-surgery biopsy of thyroid was vascular invasion so endocrinologist said RAI treatment necessary.  She says she only uses the thyrogen shots so that you only go off the thyroid replacement pills just 4 days prior to the RAI treatment of 100 mCi.

Thyrogen injections (expense at $2000 or more, my insurance only pays 50% of it because it is considered a "prescription, not a "treatment") are fairly new.  I note that most people are still prepping for the RAI the old fashioned way and going hypo 6 weeks before the RAI.

I want to make this RAI the most effective possible since putting radioactive material into my body is disconcerting so I surely want to make it worth it and do the best prep work possible to get all the RAI absorbed any any remaining thyroid tissue.   Question:  I have heard the "old fashioned" way of going off synthroid for 6 weeks was still considered more effective than thyrogen.  Is this true?  Anybody been told differently by their doctor?

[dscoochie]

Hi Shelly,

I am using thyrogen for my ablation.  My doctor completely supports its use.  I trust her.  I am NOT going off my synthoid at ALL, not for four days, not at all.  Check that as nissah has suggested.  

I have heard that some doctors think that the old fashioned way has definite advantages, but thyrogen has definite advantages too.  

Regarding water, there is some disagreement about whether you should drink a ton or just slightly more than normal.  The argument is that if you drink a ton, the RAI might flush through your body TOO quickly to be as effective as it should be.

I plan to drink just slightly more than usual.

Good luck!!!!

[shannon828]

I had Thyrogen for my ablation treatment in May following my TT for Pap Thyca (1.5cm fully contained in the thyroid).  My insurance covered the entire thing.  Studies have shown Thyrogen to be equally as effective as going Hypo.  Since this is the case, why bother going Hypo and being miserable during an already horribly stressful time?  Luckily my doctor doesn't do scans for follow-up unless bloodwork and/or ultrasounds turn up anything "concerning".  Thyrogen is a wonderful thing.  It really and truly is.

[nissah46]

I forgot to mention that I never went off my synthroid at all during Thyrogen treatment, not even for 4 days. You should check that out.

[nissah46]

I have had thyrogen 3 times in 18 months.  The first for RAI and then 2 follow up scans.  My Endo oncologist really pushed the Thyrogen, stating "quality of life".  When I questioned the reliability of the scan, he said that it is just as reliable.  I got a second opinion from my local endo, and he said the same.  In had to trust that my doctors wouldn't play with my health.  In the back of my mind I wondered about the pharmaceutical companies, and their influence on the doctors choice of drugs.

[helsurf]

i'm having my RAI on july 21st and my doc wants me to go hypo, she said she wont use thyrogen for RAI - she thinks thats the most effective way - so i have no choice, just hope i only have to do it the once

good luck - when are you having your RAI?

Helen x x x

[yancy1966]

just remember to drink a ton, and i mean a ton of fluids, right after treatment and for at least the first 48 hours, so you can pee all this out of you.
Yes, my doc plunged me to 85 TSH. I go thru it. Worked up to a week before treatment.
good luck

[Liz94]

My doctor believes in the old fashion way so that's what I did. He point blank asked me "do you want to do this right the first time or do you want to take the chance of having to repeat it?"  So, I went off meds for 6 weeks and then had the RAI.  I'm going for my 6 month visit in 2 weeks and at that time we are using the thyrogen injections for 2 days and the tracer dose of RAI followed by the scan to see if anything else remains. Granted, it was a completely miserable experience FOR ME.  Never felt so bad in all my life. BUT, I would do it again if it means saving my life.  And, I was kind of caught off gaurd when I got the call about the thyrogen injections.  I got a call from a pharmacy asking me for my copay of $480!  I said "this can't be right, my copay is $15!  Not for this it isn't!

I think each doctor has their own opinions on what works best though. Mine was just adament that I go off meds to get that TSH sky high. And mission accomplished, the highest TSH ever recorded in the history of the world where someone could still be alive and not in a coma! LOL!