Thyrogen v. going off meds

pfmerriell
pfmerriell Member Posts: 22
edited March 2014 in Thyroid Cancer #1
I am due for blood work in September and my endo wants to raise the TSH level for the test. The thyrogen injections are very expensive, so I'm thinking about going off my meds to raise the TSH. Does anyone have any experience with this? Is it better to do the thyrogen injections? What was it like being off your meds? After my surgery and cytomel last year before my RAI I didn't have too much trouble.

Comments

  • nasher
    nasher Member Posts: 505 Member
    #2
    the cursed LID
    yes alot of us have done this.

    most of us remember the Low Iodine diet involved as well

    i started to run out of energy and got some brain fog while i was off my meds prior to radiation theropy.

    assumeing you are on synthroid or the like (and not cytomel) it will be alot longer time off the meds 4-6 weeks from what i hear. so if you remember what it was like when you steped off cytomel and tripple the time thats about what you should expect from what i have been told from others in your situation.
  • alapah
    alapah Member Posts: 287
    #3
    hypo off meds vs Thyrogen
    For the ablation dose of I-131 I went off meds. By the time I got the dose my TSH was around 100. Being hypo seems to affect individuals in different ways. Some have a really hard time with lethargy, depression, weight gain, etc. I was mostly ok though my vision did get funky by the end (a little ghosting - my eyes weren't able to track together properly when i looked off to the sides). Thyrogen is expensive and, in some parts of the country, it is hard to get right now (where i live it seems to be no problem). It's hard to say how you will do but personally, I think doing it by going off meds is preferable if your system can take it and it causes no debilitating side effects.
  • flowergirl52
    flowergirl52 Member Posts: 3
    #4
    going off meds
    I went off meds. Go on an low iodine diet. You can learn about this at Thyca.org. Basically its a healthy fresh food diet. No canned or prepared foods. If they let you use Cytomel--that helps. Fatigue is the major drawback as I'm sure you know. Take care and I hope you scan goes well.
  • AliceP
    AliceP Member Posts: 32
    #5
    flowergirl52 said:

    going off meds
    I went off meds. Go on an low iodine diet. You can learn about this at Thyca.org. Basically its a healthy fresh food diet. No canned or prepared foods. If they let you use Cytomel--that helps. Fatigue is the major drawback as I'm sure you know. Take care and I hope you scan goes well.

    going off meds
    I am just starting the LID and going off my synthroid. My oncologist said he feels going off the meds is the better way to go and may improve the chances of the RAI being absorbed by my Hurthle cell cancer. Hurthle cell doesn't respond as well to RAI as other thyroid cancers do - only 7% to 15% positive results, but there aren't many other options in my case. My endo was going to use the thyrogen injections instead, but I have opted to go off the meds in hopes of improving the chances of RAI uptake.
  • lilmonkeyshine
    lilmonkeyshine Member Posts: 10
    #6
    AliceP said:

    going off meds
    I am just starting the LID and going off my synthroid. My oncologist said he feels going off the meds is the better way to go and may improve the chances of the RAI being absorbed by my Hurthle cell cancer. Hurthle cell doesn't respond as well to RAI as other thyroid cancers do - only 7% to 15% positive results, but there aren't many other options in my case. My endo was going to use the thyrogen injections instead, but I have opted to go off the meds in hopes of improving the chances of RAI uptake.

    be prepared to be exhausted
    be prepared to be exhausted being off meds the first time i was off i ended up in the hospital the next time i used the shots best thing i could have done might want to consider it I think its well worth it

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