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Thyrogen vs. going hypo

charlottejohn
Posts: 1
Joined: Oct 2006

I was recently dignosed with papillary thyroid cancer and have had a total thyroidectomy. I am getting ready to schedule my RAI treatment and I am debating using thyrogen to prepare for this versus stopping cytomel and going hypothyroid. I know this is an approved use for thyrogen in Europe, but not yet FDA approved for this use in the US. My endocrinologist has proposed this as a viable and (in his opinion) potentially equally effective option. Has anyone else out there gone through this decision process? Help..this is overwhelming.

prherman
Posts: 2
Joined: Sep 2006

I had my total thyroidectomy in August and am having my RAI this week. I decided to to take the Thyrogen injections and forgo going hypo for 4-6 weeks. My endocrinologist, who is the head of the endocrinology dept. at NY Presbyterian, told me that this ha basically been the standard at the hospital for the past 5 years since they believe it is equaly effective without all the hassle of being hypothyroid for several weeks.

He also explained the lack of FDA approval. I don't remmeber exactly but it has to do with the drug companies not having the same incentive to run the studies in the form that it would be needed to be submitted to the FDA. However, the evidence that doctors have access to, including a Johns Hopkins study in 2006, shows this way to be equally effective.

I had my first thyrogen shot today, will have myu second one tomorrow and my scan on Wed.

Also, you may want to check with your insurance regarding the shots. They are VERY expensive so I suspect that the reason some people still go hyp instead of the thyrogen shots is to avoid the expense if they are notgetting reimbursed by their carrier.

Best of luck to you.

Peter

lilmonkeyshine
Posts: 10
Joined: Oct 2006

I wasn't given any option but to go hypo. if you can do the shot then do so. Hypo was horrible, I had trouble with breathing with bradycardia, ended up with a flat ekg and in the ER. So I'm all for the shot.
Valori

cherrie
Posts: 38
Joined: Oct 2003

I have been dealing with my papillary cancer for 18yrs and I have always done hypo road, it isn't easy but I try to schedule it for when kids are home so I can be more relaxed.
Cherrie

FenwayS
Posts: 11
Joined: Jun 2005

Hi,

I wasn't given an option but to take the Thyrogen injections. My doctor was very happy that it was available and didn't suggest going hypo, didn't talk about it at all. I was glad not to have to go hypo so I didn't question it.

My doctor told me that the medicine is not delivered to her office unless the insurance has already agreed to cover it and the process takes a few weeks. So, three to four weeks after it was ordered, it arrived at her office and I went in for the injections. A couple of months later I started getting statments from the drug company showing zero dollars owed. When I called to ask them about it they said not to worry, that they were still "in negotiations" with my insurance company. Last month I received a notice from my insurance company stating that my claim was denied and I now am expected to pay $1740.00 for the Thyrogen.

The moral to this story is to be very careful, research this carefully. If you know for certain your insurance company will cover it, I'd do it. If I had known I was going to have to pay almost two thousand dollars for a shot when I could have gone hypo "for free" I would have chosen that route, in spite of the difficulties. It can be hard, but it is doable. Good luck to you!

Fen

KarenFergie
Posts: 1
Joined: Dec 2006

Most insurance companies MUST pay for Thyrogen. They don't like to do it because of the cost, but if you persist most of them will come around. The makers of Thyrogen have a toll free number for insurance reimbursement problems. It's 1-800-745-4447.

Best Wishes!
Karen

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