Stopped treatment but now facing RAI or Surgery, don't know what to do :( any advice?

Since being diagnosed with Graves Disease/Hyperthyroidism back in August 2015, I have been on block and replace treatment. I was initially on beta blockers to control my symptoms (heart palpitations, tremors, etc) and within a few months settled on a daily dosage of Carbimazole (40mg) and Levothyroxine (75mg). I actually started to feel normal, apart from the dramatic increase of weight I seem to have put on. :(

Since April 2016 my levels were within "normal" ranges and my endo was very happy with my progress. In December 2016 my endo noticed I was going underactive which explained why I was now so tired but aside from that he said I could have a trial of coming off my meds to see how I do. So we planned I would come off my meds at New Year after upping my Levo to 100mg until I came off my meds. I was over the moon to hear this news. I came off my meds just before New Year and have now been off them for 4 weeks.

I have had the odd pang of anxiety (tight chest) and one or two palpitations although my heart rate seems to be fine. I figured I was just adjusting.

I had my review on Thursday with a different endo (there are about 4 of them and I see a different one every time). I feel like he might as well have just slapped me across the face when I walked in to the room. The first thing he asked me was how much Levothyroxine I was on and when I told him I was no longer taking any meds he was very shocked. I told him to read my notes, sure enough it was there in black and what I had agreed with the other endo in December. He then tells me he would never have allowed me to come off my meds and that my antibody level was not checked before coming off my meds. I was pretty distraught to hear this news. He then told me that even if they came back normal, judging by current levels then it's not a case of IF my graves would return but WHEN and that I am underactive. I just wanted to cry. He then asked me what I want to do and I said well I will cross that bridge when I come to it and he told me I am now at that bridge. So I had to give more blood and I will hear from him this week to go through my options. What do I do?! I am 31 (nearly 32) hopefully wanting to start a family next year too. I don't fancy RAI or the surgery so I feel like I am stuck between a rock and hard place and not to mention how shoddy I feel with my 3 stone weight gain from all of my treatment.

I hope someone takes the time to read my post and offer any advice they may have, I just want some guidance as I really don't know what path I want to take. :-/

Thanks x

14 Replies

  • I got same problem I went of my med but I had to go back on I was law again no way out for us mate don't worry dear, take care evelyn

  • I don't know anything about hyperthyroidism. But as a general rule I don't think anyone can be forced to "cross the bridge" when it comes to undergoing irreversible treatment. If you chose to continue block and replace I'm sure they couldn't withdraw treatment.

    Given a free choice what would you like to happen?

  • I want to go back on block and replace, I'm not ready to make a permanent decision on rai or surgery. So I'll see what they say.

  • Have you ever tried just "block" rather than "block and replace"?

    If you haven't tried it so far it would definitely be worth trying I would have thought. You wouldn't need Levo with all the possible side effects of that, and you'd need less carbimazole and so would have reduced side effects from that.

    I don't suppose your endo would be happy about having his advice turned down. I fear you may be bullied. But if you want the life you want, and not a life which happens to be convenient for your endo, then you have to stand your ground.

    I know this is terribly sexist - but can you take a man with you who is on your side to your future appointments? Bullying tends to be reduced when there are witnesses, and male witnesses are best.

    (Can I just point out that I hated typing that last paragraph? I would classify myself as a feminist and having to rely on a man to have a chance of polite treatment grates on me hugely.)

  • I completely understand what you're saying, my partner missed my last appointment and I think we both thought I was going to be ok. He is adamant he will come to my future appointments so it might help, I wasn't expecting the attitude I received so perhaps having someone with me will help me out.

    After much consideration over the past few days I am not settling on having my thyroid removed, I want to try medication again. Even if it is just the Carbimazole as you say, I feel like not all options have been fully explored yet.

  • Hi Rubard and custard Rai or surgery is a big step to take so don't let them hurry you. Go through all the pro's and cons thoroughly before making a decision, I have graves and had Rai 7yrs ago it has left me with hypothyroidism as in most cases it does so will be on levo for rest of my life and at the mercy of gp to get dose right. I was on and off carbimazole for 12yrs as and when I was in remission and felt reasonably well for most of the time. With hindsight I would wait as long as possible before opting for for RAI or surgery as once it's done it can't be reversed.

  • I would not have RAI. I was subjected to this treatment 20 years ago and have been ill since. If I had the choice today I would stick with the block and replace,

  • Hi R&C, I'm sorry to hear about this situation. It all sounds very confusing. First and foremost, never let an endorsement push you into RAI or surgery until YOU want it. It's a permanent solution to a temporary problem and I think they push it as it's easier for them to think about hypo (I.e. if hyper meds aren't working they could get in trouble, but the millions of people who say their levo is not working well the risk is you gain weight and feel awful but they don't give a f*** about that). So it sounds like you were under medicated on levo during your B&R. Elaine Moore (look her up) says graves patients need to have their ft4 at the top of the range when on medications in order to reduce antibodies. So if you've gained 3st n gone hypo during treatment that sounds like you were possibly low on t4 and that increases antibodies. Check your previous results. More than anything it sounds like you need a new endo and a single endo. Could you go refer you somewhere else?

  • I'm sorry that you are feeling threatened by the endo. I have overactive thyroid condition and take carbimazole with virtually no side effects but at hospital clinic appointments I am

    told repeatedly that I should have RAI or surgery and the different doctors are not happy when I refuse. It's not what I want to do when I know that I will become underactive and still

    have to cope with many other nasty symptoms that I read about on this brilliant site.

    You decide what is best for your body and please don't be intimidated by any medical team.

    We all have a roller coaster ride with both types of thyroid condition but with the right level

    of medication it is possible to feel half human again. Good luck with whatever you decide

    and I hope you will begin to feel a little better before too long. Big Hugs for today. xxx

  • Hi global 42.. may I ask how long you have been on the carbomizole tablets...? Thank you 😊

  • Primmy 123, I was first diagnosed as hyperactive thyroid condition in 2011.

    No mention ever of Graves Disease. I have been one of the lucky ones who have taken carbimazole without the nasty side effects other have experienced. The endo suggested I stop medication and regular blood tests

    showed I was within normal range for about 10 months and the hyper symptoms came back! Another doctors in clinic was arrogant and told me I needed RAI or Surgery and I refused. He was rude and I was in tears leaving the clinic, but it made me all the stronger to stand my ground and I have been prescribed carbimazole again and coped with the not good weary days until blood tests and I came off them again. After 7 months routine blood

    showed I had become hyper again and another doctor tried to tell me I should have either the RAI or Surgery and I would just need to take a tablet

    each day to make me well....... hmmmmm....... I don't think so!!

    Refusing to have what the clinic doctors suggest makes them all angry BUT

    this is my body and I don't want to have RAI or Surgery and will continue to

    argue my case. Our Practice Nurse has said that no one can refuse to treat

    me with the carbimazole and so I will carry on refusing and stand my ground.

    Hope this helps answer your question. Take care now. xx

  • How are you feeling at present? Do you have any hyper symptoms? What were your last results?

    You're definitely not at the bridge yet! If you are having hyper symptoms then you could go onto just Carbimazole and titrate the dose down and see how you go. B&R didn't work for me, off it for only a month and started going hyper again. I refused categorically to have my thyroid removed or destroyed (I was not popular!) and asked to titrate carb. After about a year of slowly lowering my dose every 8-12wks I stopped and went into remission.

    For every person who tells you that having no thyroid is the best thing that ever happened to them, there will be many more who had wished they still had theirs.

  • Hi , I am in exactly the same position as diagnosed Graves in may 2015 and after a course of carbimazole and then tsh getting better and t4 dropping low , my endo then stopped medication last September. I have been told another course of carbimazole won't work and that I have to consider rai or total thyroidectomy . I like you don't want either of these options so although my reply isn't helpful , I do understand .

  • It's nice to know that someone else is in the same boat as me, I have found that a lot of other people have tried medication again and it has worked. I'm sure there must be an alternative way of treating it rather than going straight to remove the thyroid. When do you have to decide by?

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