Help finding Thyrogen
July 28, 2011 7:38 AM Subscribe
Any suggestions on how a fellow might help his favorite girl get access to the Thyrogen she has been waiting all spring and summer for?
She managed to beat thyroid cancer last year and now is having an impossible time getting the drug to make sure she's in the clear before leaving for India in just 8 weeks (which is another story ... any cool MeFi folks in Delhi?). We are in Minneapolis (certainly not a medical backwater) but have been having a hell of time helping her get some of the drug to complete her tests. A drive to Canada certainly wouldnt be out of the question if it would help.
She managed to beat thyroid cancer last year and now is having an impossible time getting the drug to make sure she's in the clear before leaving for India in just 8 weeks (which is another story ... any cool MeFi folks in Delhi?). We are in Minneapolis (certainly not a medical backwater) but have been having a hell of time helping her get some of the drug to complete her tests. A drive to Canada certainly wouldnt be out of the question if it would help.
Response by poster: Thanks Scody.
we are trying to think outside the box for ways to get her in for the follow up scan as soon as possible ideally with Thyrogen?
on the india question: yes... ideally she'll get scanned all will be well and her stay in India (6 months ouch.) will be unimpeded by the whole thyroid issue.
posted by specialk420 at 10:02 AM on July 28, 2011
we are trying to think outside the box for ways to get her in for the follow up scan as soon as possible ideally with Thyrogen?
on the india question: yes... ideally she'll get scanned all will be well and her stay in India (6 months ouch.) will be unimpeded by the whole thyroid issue.
posted by specialk420 at 10:02 AM on July 28, 2011
Best answer: Has she contacted the Thyroid Cancer Survivors' Association to see if they have any suggestions?
Realistically, though, the supply sounds like it's going to be very limited till 2012 at this point, with what little amount exists going to the very highest priority patients. Keep in mind there would presumably be logistical complications involved in indidivuals trying to get the drug themselves -- it costs thousands of dollars a dose (so who would pay for it upfront -- your girlfriend? Her insurance compay? The hospital?), it has to be refrigerated (so who would arrange the appropriate shipping?), etc.
Does your girlfriend's endocrinologist agree that it's urgent that she have the scan before she leaves -- i.e., is she at high risk for recurrence, or low risk? If she's high-risk and the scan really must happen in the next 8 weeks for objective medical reasons, then I think your only realistic options are to get the doctor actively involved in tracking down the Thyrogen, or to do the scan with the withdrawal protocol instead.
If she's low-risk, then I would assume the doctor thinks it's OK (not ideal, but acceptable) to wait till she returns from India, at which point the Thyrogen supply will (hopefully) be returning to normal for all thyroid cancer patients.
I know none of this is ideal, but it's a globally not-ideal situation for hundreds of thousands of people, unfortunately.
posted by scody at 12:53 PM on July 28, 2011
Realistically, though, the supply sounds like it's going to be very limited till 2012 at this point, with what little amount exists going to the very highest priority patients. Keep in mind there would presumably be logistical complications involved in indidivuals trying to get the drug themselves -- it costs thousands of dollars a dose (so who would pay for it upfront -- your girlfriend? Her insurance compay? The hospital?), it has to be refrigerated (so who would arrange the appropriate shipping?), etc.
Does your girlfriend's endocrinologist agree that it's urgent that she have the scan before she leaves -- i.e., is she at high risk for recurrence, or low risk? If she's high-risk and the scan really must happen in the next 8 weeks for objective medical reasons, then I think your only realistic options are to get the doctor actively involved in tracking down the Thyrogen, or to do the scan with the withdrawal protocol instead.
If she's low-risk, then I would assume the doctor thinks it's OK (not ideal, but acceptable) to wait till she returns from India, at which point the Thyrogen supply will (hopefully) be returning to normal for all thyroid cancer patients.
I know none of this is ideal, but it's a globally not-ideal situation for hundreds of thousands of people, unfortunately.
posted by scody at 12:53 PM on July 28, 2011
Response by poster: thanks for your help Scody - I think its more peace of mind. We'll talk to her doctor next week and figure things out from there. Ask.Metafilter is certainly one of the best things about the internet.
posted by specialk420 at 5:47 PM on July 28, 2011
posted by specialk420 at 5:47 PM on July 28, 2011
This thread is closed to new comments.
I'm a little unclear about your framing of this as something to try to "get access" to on your own. I don't know that there's going to be any more available in Canada than in the U.S. (it's a worldwide shortage). Also, the times I've been administered Thyrogen, I've received it as a series of injections at the hospital; it wasn't something I could get at a pharmacy or otherwise acquire independently as a patient.
That said, I understand that there is some Thyrogen out there, which is being rationed for the most urgent cases. Was your girlfriend's form of thyroid cancer particularly aggressive? Is she going to be in India for an extended length of time without access to follow-up care? If so, is her endocrinologist willing to put her at the top of the waiting list?
Alternatively, is she willing to consider doing the scan the old-fashioned way before she goes (i.e., withdraw from thyroid hormone long enough to trigger the increase in her TSH)? It's more of a pain to do it that way (and there's uncertainty involved in the timing because it's hard to predict how long it will take for the TSH to reach the right levels, so she'd likely have to make the decision to do it that way really soon), but it does work.
posted by scody at 9:13 AM on July 28, 2011