Thyrogen before RAI?

[lawteddy]

My doctor is willing to do it even though it is not FDA approved.  Has anyone used it instead of going off meds?  Has anyone asked their doctor about it?

[KBo13]

Shands hospital in Gainesville did a 3 years study on the use of Thyrogen for RAI.  I had 2 shots of thyrogen before my RAI.  I believe it's been approved by the FDA for use with RAI treatments.  I know my insurance paid for the shots and they weren't cheap.  

In my opinion, being off meds for any amount of time is too long.  I was told that being off the Synthoid was dangeous because it could promote tumor growth.  They kept me slightly hyper to inhibit tumor growth.  I am not a Doctor or nurse so the I can't explain the technical side to this argument.  I can only relate my personal experiences. I guess it all depends on who you're talking to but I trust my Doctors. It's a new proceedure/use of a drug and some people/Drs are afraid of anything new.  

All I can say is if my cancer comes back I will go directly to Shands and ask for the exact treatment they gave me in 2005, and that includes the use of Thyrogen with RAI.

Best of Luck.
  

[utahmomma]

My endo said he will use thyrogen for a scan *only* (and NOT the first scan - only subsequent scans after RAI treatment).  He will NOT use it for RAI.  He said it's too risky for the RAI because he doesn't want any cancer cells missed.

[karin37]

I think I recall from a previous post that you had spreading into the lymph nodes(?)  Mine did as well, and I asked my doctor about the Thyrogen option. He said that it was not as effective, and becuase it had spread into the nodes, he wanted to give it a really good dose of RAI. I've been off meds and on the LID for a week, and it's not that bad. Don't get me wrong, it stinks, but it's bearable for 2 weeks. Best of luck...

[GravesLady]

This is the information that I read on it.

Thyrogen is used in the detection of well-differentiated thyroid cancer.

Thyrogen Injections was approved for a total body scan for reoccuring cancer detection.  Two days of injections  into the muscle.

Developed for use in well-differentiated thyroid cancer patients who have had near-total or total thyroidectomy, and who must therefore take thyroid hormones and undergo periodic testing for recurrent or persistent cancer.

Thyrogen is indicated for use as an adjunctive diagnostic tool for serum Tg testing with or without radioiodine whole body scans (WBS) in the follow-up of patients with well-differentiated thyroid cancer

The method of preparing for the radioiodine scanning is not as effective as the old fashioned.  In other words, the synthetic TSH may miss some people who have metastatic thyroid cancer that could be detected using the standard way to prepare for this test, but this issue is not settled. This drug is not widely used at this time, mainly because it is expensive and not more effective than traditional methods.


Thyrogen may not be appropriate for all patients. The most commonly reported adverse events are headache, nausea, weakness and vomiting. Even with a Thyrogen-stimulated Tg testing and WBS, a risk remains of missing a diagnosis of thyroid cancer or of underestimating the extent of disease. http://www.genzyme.com.


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Just my personal opinion and/or experience. Always discuss your health issue with your doctor , always adhere to your doctors advise and, you always have the right to a second opinion. Nothing is a 100% or a 100%, 100% of the time. However, we are not all alike!

GL,
1990 - Hyper/Graves'
1997 - Dia/RAI
1997 - MVP - Mitral Valve Prolapse
1999 - TED - slight Thyroid Eye Disease
1999 -  Visible Nodule (suspect Marine-Lenhart-Syndrom/hyperfunctioning nodule)
2002 -  IED  - Intermittent Explosive Disorder (Graves' Range)