Graves is relapsing....doctors are pressuring me in to radioactive iodine

Hello,

So after over 18 months of block and replace I came off my meds but after 3 months I am now relapsing. I am suffering terrible heart flutters/palpitations as well as other symptoms...it's all coming flooding back to me how I felt before I was diagnosed. I saw my Endo 2 weeks ago and they were very much it's either radioactive iodine or surgery and that's it!

I am 32 years old, getting married within the next year with the hope of starting a family next year, hopefully. I mentioned this to my Endo and they were very adamant that we have time to get this done so that I am sorted...as if it was that easy! I have read countless forums and articles and I am 100% against the radioactive iodine, I have read too many negative responses about it.

I feel like I am stuck between a rock and a hard place....the anti-thyroid drugs put nearly 3 stone on me, I felt bloated constantly and I know surgery will mean being underactive for the rest of my life.

I have no idea what to do but I know when I go back to the Endo in April they'll be pushing for an answer...has anyone else been in this situation? Any help would be greatly appreciated! x

14 Replies

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  • RhubarbandCustard,

    You can resume B&R or Carbimazole only and stay on either for as long as you want. If you are not happy on B&R or Carbimazole only then RAI or thyroidectomy are the only options.

    There are members who are very happy they had RAI to ablate over active thyroid glands and my sister is glad she had RAI. There are also those who are unhappy about it. If your type "RAI" and "Radioactive Iodine" into the Search box you will find a lot of posts discussing RAI.

  • Yeah I know RAI has worked for some and not others, if I am hoping to start a family though I don't want to run the risk of having this treatment.

  • R&C,

    It's fine to plan conception 6 months after RAI.

  • My B&R failed too, levels on the rise after just a month of stopping. I refused RAI as I had TED and surgery as I have RS heart failure.

    Asked to titrate Carbimazole (Endo wasn't happy but had no reason to refuse me) and went into remission after being on it about 18mths. I dropped the dose gradually (probably too gradually) and Endo tested every 8 - 12 weeks (if doing it again I would ask for 8 weekly blood tests)

    Often the weight gain is because they leave you on too high a dose, for too long.

    Personally, I think it's worth another try, but not sure how it will affect getting/being pregnant etc.

  • Yeah, by the time I came off B&R I was underactive so in my last month they upped my Levo to 100mg to try and sort me out. I can't believe the weight I have piled on since I started the meds, thankfully I've started losing some weight now but I worry I'll end up piling it back on again, not good for wedding dress shopping! :)

    I've read that some people go on just Carbimazole alone, I wonder why they opt for B&R over this? Is it because they find it easier to treat when the thyroid is controlled this way?

    Yeah, I think I would have to be on PTU(?) for any chance of starting a family? I just figure that at least with the meds my levels were good for a while...having the surgery is an unknown result and I worry that would mess with my fertility.

  • Do you get copies of your results? Can you pinpoint the levels where you felt well? If/when you go on Carb/PTU you can look out for those levels and see how much antithyroid you are on, to get you there.

  • I kept a daily diary when I was first diagnosed with Graves. Just a line or two about what I was taking, my blood test results and how I was feeling on the various different levels of drugs. That was really useful when it came to seeing where I felt best. I was able to argue my case for an increase in Levo because I had all that info. I find if I don't write a note on how I feel everything ends up a big blur and when asked how I am I just say 'fine' which isn't really any good.

  • Good advice. It's so easy to forget how either really bad you felt, or how good and why!

  • I am in exactly the same position and did a 15 month course of carbimazole and got taken off meds last September . Only to be re started in February. I too have my appointment in April and my endo said if I went hyper again then it would be either rai or surgery . I am going to request one more try of carbimazole and see what happens . If the second attempt fails then I am going to go for the surgery. I also don't want rai . I hope you reach a decision that you are happy with and don't do anything that you are not comfortable with . Good luck with it .

  • Thanks, I think I feel the same way as you. I'm not ready for surgery just yet because I can't help but feel like it's come around all too quickly. I think I want to try the meds again or just carbimazole alone and go from there.

  • opt for surgury but ensure that you have a orescription for levothyroxine ready as its odds on you will become hypothyroid but your free t4 and free t3 will still be near top of their ranges because after graves the body simply can never again function on so called "normal"

    been there done it with my husband ....please remenber i am 100% healthy even now at 71 but our younger daughter and 4 of 6 grandkids are all hypothyroid and only 1 grandchild is ok on k

    levothyroxine all the others are only well on NDT

    and 2 have severe endometriosis too ...is this what you want fir your children

  • Hi, have you looked into the possibility of using iodine?

    healyourselfathome.com/HEAL...

    It would be a much more natural treatment.

  • No I haven't, what would that do? Would that help my Graves?

  • As the link explains, iodine has been used to treat many thyroid problems.

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