NEWBIE :) Graves Disease need some info.

Posted , 9 users are following.

Hi there,

I am new to this group but have been looking at some of the threads and decided I am going to post on here.

I have just got back from my consultation with my Endo for my Graves' disease.

I have had this now for 2 years and am currently on carbimizole 20mg.

We have now discussed that in 2 months time we need to make a decision whether I am to have the surgery or the radioactive iodine treatment.

So what I'm basically after is any body out there who have had this treatment and what your stories are.

I have a 2 year old son so the RI isn't my first choice but neither is the surgery.

I'm all very confused, worried and just fed up with it all to be honest.

Any help/advice would be great.

Thank you


1 like, 23 replies

Report / Delete

23 Replies

  • Posted

    I refused both RAI and surgery when it was first discussed with me. A few months later they stopped recommending RAI to people like me who have thyroid eye disease because it tends to get worse.

    The main thing to remember is that you may always refuse.

    I never have trusted the doctors to adequately treat the hypothyroidism that will result after either of those options. I have a neighbor who had his thyroid removed and he is always suffering with hypo symptoms because his TSH is never high enough to warrant more supplements in the opinion of the Endos.

    Report / Delete Reply
  • Posted

    Thanks Fern12

    I suffer from the eye disease also, however they said they would regulate this by me also taking steroids.

    However I'm a smoker and they will not do this on a smoker apparently because it makes it worse.

    I don't know what to do, I just thought my carbimizole would regulate this as that be enough I hadn't even thought long term.

    Report / Delete Reply
  • Posted

    Yes, I know it is better not to smoke. It is also better not to have to take steroids. It sounds like they are compounding the one problem with another--with, or without the smoking. I have never smoked, myself, so I can't really say much about it.

    You just have to stand up for yourself. They can't force it on you. In the end you have to take charge of your own health. Study up on what you can find out, and try to work reasonably with your doctor, but don't let him bully you, either.

    I have written about my ordeal elsewhere on this site and others, if you care to read more.

    Report / Delete Reply
  • Posted

    Hi Becky and Fern

    I too have an overactive thyroid and have been advised to have the RAI as is the second time that I have suffered with this. I was started on 20 mg carbimazole which I had been taking since august. on my second visit I saw a different doc who again suggested RAI which I refused . She told me that the thyroid blood test levels hadn't changed and that she wanted me to go on 40mg . I refused to take that high a dose as my symptoms had got a little better i.e. palpitations were not as bad so she agreed to keep me on the 20mg. I then seemed to slip through the net and didn't receive a letter for my next app. So I phoned and was told that I would never have got a letter as the doc hadn't put my review request in!. was given app over phone , had bloods done on same day as app and saw original doc ( RAI mentioned again) doc said would phone with blood results . Waited over two weeks and had to phone hosp to see if results were through . doc phoned me back and said I had gone hypo and said was faxing a presc to my docs for 5mg tabs. I wonder what would have happened if I had been taking the 40mg ?? . Anyway had app yest and saw a diff doc yet again who was virtually trying to bully me into the RAI although he told me my bloods were now fine. Said I would be on carb for rest of my life?? and that as I am 56 would be detrimental whereas if I was in my eighties it wouldn't matter as wouldn't be on it long !! kept pressing me on why I wouldn't have the RAI . Said my cholesterol was 5.7 and that with my high bp the thyroid would cause complications although this had never been said to me before . think he was trying scare tactics .Anyway he said come back in three months time and stay on 5mg. Hope I don't see him when I have next appt.

    Report / Delete Reply
  • Posted

    I have hyperthyroidism (but not Graves).

    It is debilitating, for sure. I'm still working on healing, both physically and mentally/emotionally.

    But if you are so inclined...and I highly recommend your research. There are MANY non-invasive things you can do and take (various supplements) that can help balance out your thyroid. Yes, it may take several months. I am a firm believer that the invasive procedures are "old school" (i.e. traditional; conventional) and that they may only make things worse.

    The internet has SO MUCH info!

    Of course, the doctors WANT you to have these expensive treatments, as having them puts a lot of money in their pockets, too! Take your health into your own hands. Everyone's case is different, but you owe it to yourself to be certain that you feel good about your decision. Don't be intimidated, but also be practical, too. For example, if you smoke, PLEASE consider is NOT helping your health issue one bit!

    Also, there is most definitely a mind-body connection. Try to remove the stressors in your life and do things like counseling, meditation, and/or prayer. This may be a good time to re-evaluate your lifestyle and make the necessary changes that will help you live a happy, peaceful life.

    And continue to use this forum to talk to others with similar issues. It's wonderful to have an online support group to talk with!

    Much success!


    Report / Delete Reply
  • Posted

    The next time you see your doc, ask for antibody testing to be done for both Graves and Hashimotos. I have posted here before that my results and Graves stayed static until I added Acetyl-L-Carnitine to my Tapazole dose. I now take Tapazole 5 mg, Acetyl-L-carnitine 250 mg every other day. I think all Graves patients become carnitine deficient because of their disease.

    Since your lab tests are all normal now, I would take a very low dose of it if you are going to try this and you can probably decrease your Tapazole even further.

    For me, I knew I would never consent to surgery or RAI and it has been belted out to me several times even when my results improved and I had no symptoms and was on a low dose of meds. I think physicians "follow the herd" and lack the ability to think in "common sense".

    Report / Delete Reply
  • Posted

    Hi Becky I have just had radioactive iodine on wedseday every thing went well I had to have the radioactive iodine because I could not take the medication for my thyroid so I had no were to go but they said I could have sergrery or radioactive iodine all you do is swallow a tablet I have to say a few houres later I was feeling sick so I rang my gp up and they gave me so anty sick tablets so I feel better that is one of the side effects and a little bit of wind in the tummy I carnt see my grandson that upsets me but it is only for 13 days so I face time him on my iPad that is what one doc said then another doc says you can have them with you but don't cuddle them or sit to near them I think you have to be about 6 feet away from your children it is very hard to have them with you and hard to be with out them but what do you do please don't worry the dr will do best for you may be if you have no one to look after your children may be you could ask if they could put you in hospital for a whileyou have to have your Owen towel your own cutlery crockery and flush the toilet 2-3times after use I do think it is better then surgery for now if I have to have surgery I will have to go down that road I do hope this help you I worried about it but I just want to be better I have had thyroid trouble for 4years I got rid of it well with the thyroid meds but the thyroid came back they put me back on the meds I was always sick so that wy I had to have the iodine tablet
    Report / Delete Reply
  • Posted

    Hi Bopeep,

    Thank you for your reply.

    Wow, thank you. Glad your feeling ok since having the RI on Wednesday. I have a couple of months to decided what to do regarding my thyriod.

    I would prefer to do the RI however as u may have seen in pervious post I have a 2 year old and I don't think it's going to be easy, however I really don't want surgery but having my little boy I think that's the only option.

    I didn't think it would come to this now, I thought all my levels were getting better but recent ones have shown that it's never going to go away now so hence the option now for the next step.

    What have they said to you regarding side effects? I'm worried about them, I'm worried about losing/putting on weight. Lots of things.

    Thank you for ur help and info

    Report / Delete Reply
  • Posted

    Hi Becky

    The side effects well to be honest with you they have not told me any thing I new when I got home on wedseday a few houres q later I felt sick I new it was the tablet I had because it was the same sickness that I had with the thyroid meds that I had to stop them but since my gp had given me the anty sick drug I am a lot better I don't think you have anything to worry about love it will be better then surgery every one is different some people can take meds some people carnt I am just one of theme that carnt take meds I think there is no side effects that I have heard or seen on the internet that bothers me at the moment but I will let you no if I have any more side effects please don't worry think positive if you don't do something you will be very ill that is what I got told so we have no say only two things surgery or the tablet you will be better you will see love prayers if I can help you I will take care

    Report / Delete Reply
  • Posted

    Ok. I hope I don't come across harsh with this reply. I certainly don't mean to offend anyone. I was in EXACTLY your shoes up until ten days ago when I had my thyroid removed. I had been suffering from hyperthyroidism miserably for years. I posted on sites, read all kinds of terrible horror stories about patient experiences, had numerous people tell me "Don't do it! Find non-surgical alternatives!" But, I had an organ in my body that was not functioning properly and was tearing me apart. I was feeling so horrible. I'm a distance runner, so I know what I need to have aerobic fitness-wise, and I have already started running again two days ago (eight days post-surgery). Trust me that people will normally only post the bad things on the internet. I am so, so glad I had it done. Trust your endocrinologist.
    Report / Delete Reply
  • Posted

    I hope all works well for everyone in their specific situations, as everyone is different. After 10 days you cannot judge whether or not your body will have long-term negative effects from removing your thyroid.
    Report / Delete Reply
  • Posted

    It's not actually your thyroid that's not functioning properly but your immune system. For some reason it attacks your thyroid making it dysfunctional. I think more research should be done to find out why this happens i.e. treat the cause and not just the symptoms. I think this is why so many people are reticent about having surgery/ RAI ,seems a drastic step to take especially if, like me , you have several years without symptoms only for them to reappear. Why is my thyroid ok during that time? Why does my immune system decide to attack it again? doctors don't seem to have the answer do they?
    Report / Delete Reply
  • Posted

    Jane, I agree with everything you said. My disease was triggered by emotional stress which I think caused my immune system to do this. I reported before that after I had Graves when I had further stress on the job that I would break out with a lesion on my forehead that when biopsied did not reveal any definitive results yet when I rubbed cortisone scalp lotion on it, it disappeared. It was like I was telling my immune system to go to sleep, that it was a false alarm.

    Ideally, we need something like that to use to tell our immune system to go sleep, false alarm, when we have Graves.

    That's not likely to even be searched for by Researchers as long as the medical profession continues to endorse surgery and RAI as acceptable treatments for Graves.

    Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up