Thyroid Cancer Question

September 28, 2012 2:54 PM

Thyroid Cancer Question! Seeking advice about TSH (thyrogen) injections instead of witchdrawl/LID before RAI.

Hi! I was diagnosed with papillary Thyroid Cancer earlier this year. My thyroidectomy went wrong and a nerve was paralyzed so I have only had the left side of my thyroid (and a bunch of lymphs it had spread to) removed so far. I was put on thyroid medication and set about waiting to see if the nerve would recover. After the surgery I felt like shit for about 2 months. I was tired all the time, couldn't focus or remember anything, and basically was barely functioning. I was not myself at all. They did tests and my thyroid levels were good so I'm not sure why I was so crappy for so long. Now that my nerve is recovering they're about to go back in to remove the rest of my thyroid and get me to RAI.

My question is about the alternative to the withdrawal/LID method of injecting you with loads of TSH. I know its newer and seems effective but I would really like to hear first hand accounts. I'm considering it because I really need to be working. I lost way more time than I anticipated due to my slow recovery from my 1st surgery and I've been playing catch up. Also my Doctor told me that the TSH injection method also somehow exposes you to less radiation in the end.

Any information and first hand accounts would be so very appreciated!

posted by mrs.pants to Health & Fitness (7 answers total)

I had follicular thyroid cancer about 15 years ago, and so have prepared for scans using both the withdrawal protocol and Thyrogen. Assuming your doctor feels Thyrogen is indeed an option for you (I seem to recall that when it first started being used, doctors preferred to use the withdrawal protocol for all initial scans post-treatment because they were believed to be more accurate, but I cannot say if that's still the case), and that the shortage in the drug supply from 2010-11 has been resolved, it really is WAY easier to deal with. You'll still have to go on a low-iodine diet for a few weeks (which is a weird diet that always drives me a little nuts), but for me it means the difference between feeling a little under the weather for a few days or a week vs. feeling awful (cold, exhausted, sore, lethargic, unable to concentrate, etc.) for many weeks or longer.

By way of comparison, the last time I prepped for the scan using withdrawal (c. 2000), I wound up having to go on disability for something like a month. The last time I scanned using Thyrogen (c. 2007), I took a couple days off.

Shorter: if your doc recommends Thyrogen and you have concerns about missing work for an extended length of time, I would say go for it.
posted by scody at 3:19 PM on September 28, 2012

I had papillary carcinoma a few years ago, and I've had the thyrogen injections a few times. I've not been asked to do the strict version of the low iodine diet, just to avoid a few obvious items. I usually have to go into the office twice before the actual scan, for the two shots, and then I have the scan. I usually just let my boss know I'll be running late a couple of days, and then I take off the day of the scan.

When I first read up on the treatment I was dreading the withdrawal and the strict low iodine diet. I'm really grateful not to have to do this.

Feel free to memail me.
posted by bunderful at 3:47 PM on September 28, 2012

I've done both the withdrawal and the Thyrogen method. I'm gonna be completely honest, here--my insurance doesn't cover Thyrogen, and I've stopped doing my yearly cancer scan/treatment because of it. My parents paid for it once (it was like 2 grand for the shot) and it was fucking heaven compared to withdrawal. The withdrawal method, especially since I am bipolar and suffer from long-term clinical depression, is just brutal. Basically I could count on at least 3 months of every year being just completely ruined by the side effects of withdrawal. If Thyogen is a good fit for you, and it is covered by insurance, by all means, DO IT. It's totally worth it.
posted by xyzzy at 5:45 PM on September 28, 2012

xyzzy, have you looked in to the Thyrogen patient support program (scroll down to the very bottom of the page here)? If not, it would be worth contacting them to see if you would qualify for assistance, especially with your other health issues. I hope you can do the scan again one of these days.
posted by scody at 7:39 PM on September 28, 2012 [1 favorite]

Response by poster: I should mention that I'm uninsured and already going into massive debt so my logic is if this creates more debt yet allows me to work it'll be better in the end than doing the withdrawal method and losing a month to the crazies.

Thanks for all the answers and if more people want to share their experiences I'd appreciate it!
posted by mrs.pants at 9:12 PM on September 28, 2012

If you're uninsured, then by all means you should look into the Thyrogen patient support program, too. Better to be able to work and NOT have to go into debt! Good luck.
posted by scody at 9:39 PM on September 28, 2012 [1 favorite]

That's awesome, scody. I'm definitely going to look into that.
posted by xyzzy at 1:19 AM on September 29, 2012