Graves diagnosis, need advice

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TractorRosy
TractorRosy Posts: 10 Member
Hello All,
It is just shy of a year since my graves diagnosis. My symptoms and numbers have fluctuated between severely hyper to severely hypo. At first, I took carbinazole (am in germany) for about 5 months until I swung hypo. 2 months later the hyper symptoms were back full force so now I am back on the carbinazole, which really makes me feel sick. My endo said i should take it for one year and pray for remission. He suggested there is a 50 percent chance that I could go into remisson so therefore he wants to wait a year before suggesting more invasive measures like radioactive iodine or surgery. Meanwhile i have gained quite a lot of weight since going back on the meds. I am an entertainer, so that is a problem (costumes no longer fit). My boss is concerned, and after looking up my diagnosis in the internet, is mildly pressuring me to "get rid of it", meaning my thyroid! He seems to think that the hormone replacement drugs will surely be less toxic than the carbinazole and i will feel better and be able to control my weight better. Is he right? I have heard that "all roads lead to hypo", but I fear being dependent on meds for the rest of my life. Does anybody have any advice for me?

Replies

  • MmmDrop
    MmmDrop Posts: 160 Member
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    Is your endo checking your Free T4 and Free T3 while you're on anti-thyroid meds or just the TSH? The Free T4 and Free T3 are your actual thyroid hormones, its more than likely they're just going by your TSH a pituitary hormone, and your thyroid hormones themselves could be completely tanked. This is what I went through.. I was nearly bed ridden and gained 80 pounds because I was being overdosed on anti-thyroid meds. I would have your FT4 & FT3 checked for sure, and also your iodine levels.. after having my thyroid removed and doing lots of research, I wish I hadn't had it done. Worst thing I've ever done.
  • arachnidette
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    The ups and downs when getting your meds straight can be really annoying and frustrating. Don't let your boss pressure you to do the iodine treatment just because he is worried about you and your weight. If your doctor doesn't want you to have your thyroid out, try waiting another year. My doctor said approximately half of her patients kind of go into remission within 2 years of starting medication (we were talking about tapazole, don't know about carbinazole), their thyroid just calms down all on its own. Of course, after a few years it often comes back but her point was that you shouldn't jump the gun on thyroid removal. When you do not have a thyroid you have to stay on medication and you are going to be hypo for the rest of your life by default. I would do what the person above suggests, get all your hormone screenings done, talk to your doctor, maybe find a second opinion, and don't let your boss push you into anything drastic.
  • TractorRosy
    TractorRosy Posts: 10 Member
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    Thank you so much MmmDrop and arachidette. I will take the advice about the screenings and my boss. I know I am much more informed about my health than he is after having read countless, books, blogs, and websites in the past year. He is just concerned and wants to be proactive in solutions, like many gentlemen ;-) I have always been kind of a health and nature person since childhood. (I am 50). I would never elect to have a surgery or Radioactive iodine. But if, after 2nd, or 3rd opinions, the consensus of qualified healers was to go through with those treatments, I would do it. I am indeed praying for a remission and doing everything I can with diet and lifestyle. Keeping my chin up and happy for every good day. It took awhile, but I guess I´m starting to live with this thing. That fact is really helping!
  • twinkles2121
    twinkles2121 Posts: 137 Member
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    Of course it differs per person, but for a severely hyperactive thyroid, it is likely you will be on meds for the rest of your life, either anti-thyroid or levothyroxine (or armor) It's great that you were able to achieve remission once, and definitely never give up trying to get it again, but also be realistic that there is no cure for thyroid disease, only treatment. Some people get lucky and take the treatment and end up with a partially working thyroid for a number of years BEFORE they go hypo, but it's still hypo in the end.

    I understand the stress. (Graves for 10yrs, 12x5mg methimazole per day, at worst, t3 and t4 were over 100) It's scary because it's a permanent treatment, if you don't like the outcome you can't go back. I resisted the it [iodine] for so many years, I kept hoping one day, it would just burn out a bit so I could stop the meds.

    Definitely don't do anything your not ready for, honestly, the symptoms of being hypo are 1000% worse than being severely hyper, even still, i have no regrets about going for the iodine (twice), my dr's didn't lie, once you get your dosage right, being hypo is easier to manage and easier to lose weight. (versus being severely hyper when my weight was going up and down like an elevator)
  • TractorRosy
    TractorRosy Posts: 10 Member
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    Thanks Twinkles 2121
  • shvits
    shvits Posts: 249 Member
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    I also had a swing from hypo to hyper thyroid. I had nodules that decided to start producing. I tried anti thyroid meds., not much help and lost a lot of hair. I am allergic to iodine so decided to have surgery. My surgeon (one of the world's best and an authority on surgery) said that he only takes out half at a time as too risky to take it all out (unless cancer). It worked! I feel better even if I have to take meds, still less then if I had it all taken out. Even having a bit of your own thyroid is helpful. Need to take two meds now one for T4 replacement and one for T3 replacement.
  • arachnidette
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    It's good to hear from people like Twinkles2121 who have been dealing with thyroid issues for so long, it definitely puts some perspective on it. When I went hypo I really hated it and I tend to use the hyper energy to my advantage, so I'm definitely cautious about getting the iodine surgery done.
    Whatever you choose to do, TractorRosy, I'm sure you will find a good path for yourself! Good luck!
  • hbpslo
    hbpslo Posts: 6 Member
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    I just saw this thread, just recently back on MFP. Don't be afraid of RAI treatment. I had it almost 13 years ago, and am on synthroid now. Yes, I will have to be on it the rest of my life, but that's a small price to pay for still being here.

    I went undiagnosed with Graves for almost 10 years, so when it was finally diagnosed I was very hyper. I have found in my readings that treatment recommendations totally depend on where you're living on the globe. In the US they typically recommend RAI. My endo told me it was actually better that I was so hyper, it meant that I'd need a lower dose of RAI.

    Best wishes to you on your decision. Only you truly know how you're feeling, so like others said get all your levels checked, and feel free to seek a second opinion. I spoke with three endos before I found the one I've been working with since 2001.