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Can some one help me regarding thyrogen shots

nevergiveup51
Posts: 40
Joined: Jan 2010

Hii everyone. I know there is a shortage of the thyrogen shots but I was wondering if anyone has been able to order this themselves or even have found this drug. If so where? i live in Monroe, Connecticut. The np at my doctors office has mot found it for me and when I tRy to call around to see if I can locate it she gets extremely mad. I dont understand why because I am just trying to help myself. i am 3 to 4 months over due. I hope someone can help me.

Thank you
Debby

Stacie3071's picture
Stacie3071
Posts: 23
Joined: Sep 2011

My oncologist just had me come off my synthroid 4 weeks before I had the RAI ablation. It worked great and I really only had a couple of side effects but I took cytomel for them.

And to be honest about your NP's attitude I would not care what she thought.(sorry if this sounds really hateful, but It is your life and you have to do what is best for you). I am sure she doesnt have as much time as you do to search for it. So I would not give up on searching for it. Good luck and maybe you could talk to your oncologist about just coming off your meds since you are soo way over due for the treatment.

Stacie

jewels66
Posts: 5
Joined: Mar 2012

Hi....I live in Los Angeles, UCLA and Cedar Sinai told me they could not get the Thyrogen Kit...... I thought that was crazy and called Genzyme the manufacturer, asked for the Thyrogen department and they directed me to 3 distributors. Curascript has the kits and shipped it via Fedex to me overnight. With the approval of my Endo doc, my paramedic/firefighter husband injected me 2 days prior to my RAI. You just have to be your own medical avocate and call around. Start with Genzyme! I did not want to delay my radiation treatment and did not want to take no for an answer. A lot of political red-tape bullshit in the medical system. Good luck!

BostonKris
Posts: 2
Joined: Mar 2012

I agree with jewels...you need to advocate for yourself. There is no reason why your endocrinologist cannot order from Genzyme, bill your med. insurance for it, and administer the shots to you. I just received my RAI today and had my 2 shots Mon. & Tues. My endocrinologist ordered my shots from Genzyme back in January. There is a special order form practitioners have that they fill out with the patient's info and desired date for the Thyrogen. Due to the high demand, Genzyme requests approx. 3 months lead time but will try to fulfill the requested date. This is all information that my endocrinologist told me directly. He is also a believer that since Thyrogen has been approved for thyroid ablation therapy, there is no reason why any patient should go through "hypo-hell."

Good luck and I do hope you succeed in getting the Thyrogen!

LMB57
Posts: 5
Joined: Mar 2012

Thank you for this email and also jewels. my first visit with the endocrinologist was today, i had my thyroid removed for cancer last tuesday. i am freaked out having to face "hypo-hell" My doctor said the drug was very difficult to get. i plan on calling him first thing tomorrow and pushing this issue as well as calling Genzyme.

Any other suggestions are welcome. I am just starting down this road.

LMB57
Posts: 5
Joined: Mar 2012

I want to thank you all for your advice. After fighting for the last 3 days, I was able to get thyrogen shipped to my doctor via fed ex. I had to pay cash. I am shocked by what one has to go through to get this drug. My doctor had no idea how to do this, so I was educating their office along with
Myself. Finally, on Friday, I was able to order it. There has got to be a better way. Thank you again for the advice on this discussion board.

bouncer
Posts: 30
Joined: Apr 2012

I was due to have RAI last summer, following removal of my thyroid but, as my iodine levels were high despite no thyroxine and following the diet, this did not take place. My Oncologist wrote and told me I could have Thyrogen, to lower my levels, but it had not been imported into the UK for a couple of years. Fortunately, I was given a CT scan and this showed that the surgeon had left some thyroid tissue, hiding behind the carotid artery. This was removed in March and I had the RAI in early April. Strangely, Thyrogen was prescribed for me the weekend before the RAI, as it had become available again (but not in time to avoid the March operation!).

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