• Has anyone else had to wait for Thyrogen?

    Asked by sunkist1220 on Monday, August 20, 2012

    Has anyone else had to wait for Thyrogen?

    I have been on the low iodine diet for over 2 months while I wait for Thyrogen so I can have my radioactive iodine treatment. It is very difficult dealing with the Medical assistant in my doctor's office as she is very sarcastic and cold. I find this particularly disturbing as I am an RN and have always been a strong advocate for my patients. I need to find another endocrinologist but don't know if changing now will set me back to square 1...very depressed and feeling hopeless and definitely abandoned by the medical community...I have not spoken to my doctor since my initial visit on June 21st...he probably forgot I even exist.

    7 Answers from the Community

    7 answers
    • Cheryl2's Avatar

      When you posted about this, I thought it was strange that something vital to treatment was not available for you. I googled it and found out there is a world wide shortage. Could you try to find another endocrinologist and ask the question about how long he/she would anticipate your wait time would be?

      about 4 years ago
    • FreeBird's Avatar


      It appears that changing will not make a difference as far as Thyrogen is concerned.

      However, if it makes you feel better to go with another doctor's office, go for it! In our experiences, some doctor offices are better than others. It ranged from the sterile waiting room with a sliding glass panel and a sign that basically says, "pay up or get out," and cold, grumpy people who could use a vacation, to the cancer center where they took our picture on the first day and call us by our name when we walk through the front door. When you sit in waiting rooms long enough, you overhear that many people go through the same thing. People who are nice and friendly, and who seem to have a pulse, make a bigger difference than the medical care that has been less than perfect here too. Sometimes I think it would be better spending all that health care money on spa resorts and drug dealers. I'm always left feeling that, for the price paid, they could do a lot better.

      Best wishes for your treatments, and I hope you feel better soon. In my opinion, if you feel abandoned and uncared for, it's time to let them know loudly or pull the eject lever and find a better team.


      about 4 years ago
    • Mollie's Avatar

      First, I am so sorry. I think the key would definitely be find another doc...one where they will treat you well because YOU DESERVE IT!!! As long as you get all of the medical records, don't forget the scans, it should be an easy transition. Good luck!!!

      about 4 years ago
    • emsavard's Avatar

      Why do you not go off your medication and go hypo, if you cannot get the thyrogen? I know going hypo is not a fun experience as I have done it 5 times. If it means getting your treatment and getting off the low iodine diet it may be worth it. Sorry to hear you are having such a bad time with the medical profession. In that regards I was very fortunate and still am with my follow ups. Wishing you the best.

      about 4 years ago
    • Carolina18's Avatar

      It is such a shame that some people in the medical field have no compassion. You are not the only one that has dealt with this issue. I have heard several thyroid cancer survivors talk about the lack of compassion in their doctors office. Yes, you do need to switch doctors. The tension and frustration you feel with this group is not healing to you at all. Regarding the Thyrogen shortage, there is no longer a shortage from the manufacturer. I believe the backup if from the 2 distribution channels who handle Thyrogen. You are correct when you say that your doctor may have forgotten about you if you have not seen him since your initial visit. If you would like to talk more about Thyrogen, let me know. I will give you my contact information. You are not alone on this journey.

      about 4 years ago
    • Carolina18's Avatar

      Here is another on-line support network directly related to Thyroid Cancer. You will find this network helpful as well. http://www.inspire.com/inspire/group/thyca-thyroid-cancer-survivors-association/

      about 4 years ago
    • Tracy's Avatar

      IF YOU LIKE your Dr you should not be forced to change because of one stupid MA.
      Talk to your Dr about the medical assistant. They probably have no clue about what she attitude she is giving to patients. That is not acceptable to anyone let alone cancer patients, she is causing issues its with not just you but others as well.
      Thyrogen is hard to find but is possible, don't give up. I have learned over many years to be a nice pest (very squeaky wheel) bypass the woman who treats you like this and find someone else in this office you can talk to; &/or insist she talk to you in a different tone. Its hard when you feel like XXX and depressed but that's when you need to either get a friend to be a XXX for you or find your inner strength - the key is to always be polite but insist on your needs first. My husband has gotten good in this role :) If you need me I can do it for you, Be strong it will be OK Tracy

      about 4 years ago

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