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Monday, February 14, 2011

Thyrogen shortage

So after tonnes of digging, I knew I would find something in writing about this shortage. There is nothing to be found on either Genzymes website nor ton the Thyrogen website. I as a patient requiringthis drug find it somewhat shady that this info has to be a dirty little rumour floating around. So you don't know anything for sure until you go to your pharmacy to fill your script only to be told some genaric info about it not being available. Then what? Treatment is rescheduled? Cancelled?

So I finally got my hands on the info, the letter is addressed to healthcare professionals and was dated in Nov 2010. Causually mentions a the delay will be for a "short period" and advises Dr's to "consider this when scheduling patients".

I spoke with a local Thyrogen rep, who told me I will not be able to fill my script until AFTER May when shipments resume. She could not tell me the reson for the shortage. Her carefully scripted answer let me with more questions than answers.

Here is the letter:



What's your take on the issue?

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Edited on Feb 15 2011 to add this recently found letter with a slight bit more info. Thanks to Thyroid Cancer Canada for posting it

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6 comments:

  1. AnonymousMay 22, 2011 at 11:28 AM

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    ReplyDelete
  2. katydogcrazyJuly 20, 2011 at 11:31 PM

    I follow http://www.endocrinetoday.com/view.aspx?rid=85846 on Twitter. That led to this http://www.thyrogen.com/pdfs/supplyupdate-2011.pdf which does not look good at all [frowny/sad face]. My cancer was the good kind so I will be postponing my annual thyrglobulin testing if it is not available in October.

    - Katy

    ReplyDelete
  3. katydogcrazyJuly 21, 2011 at 5:44 PM

    Now that I have read more of your blog, I can tell you that you are the sort of patient I would like to hope gets access to the available Thyrogen and not people like me who can wait for months (without worry) or just go hypo - horrible as that is - if we want results sooner.

    There has been a shortage of chemo drugs recently, and now this ongoing Thyrogen shortage. I am enough of a socialist that I would like to see a national program in place (I am in Canada) to ensure that these important drugs get to those who need them most. That is not in the works, so I hope your oncologist has enough clout to get it for you.

    xox

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  4. AnonymousAugust 18, 2011 at 10:55 AM

    Thanks for sharing the information you have found! I received a call this morning from my Doctor telling me about the shortage...He is not postponing my test because I'm only 1 year out. I have to go off my thyroid medicine for 3 weeks then have TSH drawn to make sure its above a 5.0, and a week before my scan I have to go on the low iodine diet...I'm so not looking forward to this, my body has just become acclimated to the 0.2 level I'm at.

    ReplyDelete
  5. Michelle ZAugust 23, 2011 at 11:37 PM

    I've been at the front of the Thyrogen wait list for two months now after finding another tumor by ultrasound. The ultrasound and CT show that it's too close to my carotid artery to biopsy it safely, so I'm still waiting. I still have 3 small children at home, so my doc really doesn't want me to go off my levothyroxin. I don't know who to be irritated with....Gynzyme for not finding a way to remove the particulates, or the FDA for restricting them for the particulates even though nobody has been hurt by them. I know that all the other countries are still using Thyrogen without restriction. Does anybody know a country I could go to to get the Thyrogen? I wonder what the problem would be with that? Who's to say I couldn't fly out, get my dosage, have a friend administer it, and have my doc set up the test. Her hands would be free, wouldn't they? I mentioned it to my doc, and she's looking into it. Said she had not thought of it before, but I don't think she's encountered such a wait on Thyrogen before now. Do you have any more info than I've found out? Thanks! (-:

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  6. HippofatamusAugust 24, 2011 at 8:53 AM

    The thyrogen shortage is a definite frustration for me. I've been waiting far too long for it. Michelle, check out this more recent post about it

    http://itsnotthegoodkind.blogspot.com/2011/08/thyrogen-in-continued-shortage.html

    One thing I can say is that I tried to get some from the states and was told they could not honor my prescription because it was from another country. So the only way would be to have a script written by a Dr in the states. This would involve much more than I am able to do or afford.

    No matter what the reasons there are many of us who can not go hypo. It's just not an option for everyone, and that's when this shortage becomes a much more scary issue. It prevents us from advancing in our treatment, and it's a terrible position to be in. For all of our sakes I hope they get it sorted out, soon. Good luck to all of you!

    ReplyDelete