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Thyrogen shots before RAI

snoopy100
Posts: 9
Joined: Oct 2011

Does anyone know about these shots? I am waiting for the drug to arrive. There is a shortage of it. I was told that I will get 2 shots one day after another. My insurance does not cover this and the cost is about $1000.00 a shot. Can anyone give me any info about this.
Thank you
Barbara

amorriso
Posts: 186
Joined: Oct 2010

Hi:

I've used the thyrogen shots twice now - once before my last RAI and once before a PET scan. Yes there is a shortage, but if you can manage the cost do try to get some. Your alternative is to go off your thyroxin for several weeks. Which puts you into the dreaded Hypo stage...life can be quite challenging then.

The thyrogen shots will bring your TSH up to the point where they can do your RAI etc. The schedule is day one: injection, day two, injection, day three RAI. Timing is critical so have all the appointments confirmed first.

The injections are given in the butt cheek. Some people will have slight side effects - ie a headache or general tiredness, but NOTHING compared to weeks without your meds.

I had no side effects other than being a bit tired. I too have to pay for mine, but it balances out because I am able to continue to work which equals a paycheck. My school has actually been kind enough to help with the cost - cheaper than hiring a substitute for a month.

Good luck getting the drug - hope it comes through for you

snoopy100
Posts: 9
Joined: Oct 2011

I am very grateful for the information. I am #8 on the list. They have been getting about 4 doses a month. I am looking foward to getting this finished.
Thanks again
Barbara

annejem
Posts: 1
Joined: Oct 2011

I also had the thyrogen shots. I had to have 2 days of shots then wait a week and have 2 more shots, then I went in for the RAI treatment. I do not know why I needed 4 shots. My doctor does not really explain things. Thankfully my insurance covers it. But after the RAI I still had some cancer remaining after my body scan and I was supposed to get another scan in sept but because of the shortage of thyrogen they are making me wait until dec. My doc keeps telling me not to worry because I have the "good" kind of cancer. I hate the waiting and hope it will be available by then. I too am supposed to be on a waiting list, I really don't want to see what it would be like to go without my thyroid hormone. Good luck to you

amorriso
Posts: 186
Joined: Oct 2010

Tell your doctor that there is no such thing a good cancer. I've actually told off a few (politely, but firmly) when they say that to me. Good??? I'm waiting for my 4th surgery, then get a lovely 5 week course of radiation to hopefully get rid of this.

Do not let him keep you waiting - be demanding - learn all you can and get in there and get things moving.

Its time people with thyroid cancer get treated with the same urgency as all cancer patients!

Sorry - had to vent a bit!

Best of luck!

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