Surgery or radioiodine treatment?

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I have been diagnosed with graves, hyper and a goitre and am currently on 10mg of carbizamol

which seems to be keeping levels in check.

The specialist has recommended radioiodine but I'm not keen, the other suggested option is surgery but I don't feel like I should go for this if specialist thinks rai is best option as they should know best???? He has told me to think about both options and let him know what decide.

I had partial thyroidectomy in 1995 so this surgery will result in total loss of thyroid and hypo but have been told will be hypo with rai so no difference!

Has anyone else be faced with these options and what did you choose and what was outcome?

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15 Replies

  • Posted

    Hi Nikki, did you go into remission after partial thyroidectomy? I was wondering because I too have graves although no goitre. My doc offered me RAI but I said I would prefer to stay on carbimazole. I was told that my own immune system will eventually destroy my thyroid in any event and I will naturally become hypo so I didn't see any point in hurrying the process along. Not everyone can control their symptoms on carbimazole. My friend is going in for a full thyroidectomy in 2 weeks time but the carbimazole simply wasn't stabilizing her condition, so she felt she had no choice. I guess what I am saying is, if the carbimazole is working for you why upset the status quo?
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  • Posted

    Hi I have Graves' disease, with hyper thyroid and goitre. I was told I am one of the few which never will be cured. In my case I researched my illness and have to decrease and increase medication every couple of weeks due mine being over active I have no option but to keep it take as long term I will affect my organs. I am specialist care as I am unstable. Because of my age I was advised against RAI, and surgery isn't an option for me as I scar very badly due to genetic make up. I have been exploring alternative therapies, and have been going to see someone for 'reiki' it's has helped every aspect of illness. Symptoms and general health have improved greatly. I recommend anyone to try it. Also I wondered why they want u to have Rai if carbimazole is keeping levels stable. As long as levels are stable then it shouldn't affect organs long term, it's when u don't control it that it has long term affects. And also you immune system will NOT kill your thyroid that is completely wrong, in all research I have never heard or read that anywhere. Research diets and alternative therapies. I have to say inner healing is the way forward. I was unsure of alternative therapies at first but once I started to see results and consultants were telling me whatever I was doing keep doing it, I knew it must be helping. Best wishes to you :-)
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    • Posted

      Hi there... Newbie here...

      Ladykinkavel... Your body can attack your thyroid and destroy it (eat it up) I just came back from my doctor, today in fact. I continually fluctuate between hypo and hyper. She just told me she suspects I will have to radiate my thyroid. I have hashimoto's. She told me she herself had a scan oh get thyroid done once and then several years later had it again and her body has attached and absorbed it. When you have an auto immune disorder like Hashi's, your body attacks the thyroid. That's what I'm assuming Nikki meant.

      I'm reading through this forum to try figure out what the best option is... To radiate or remove...

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  • Posted

    Hi,

    Last time it was just a goitre, no graves or hyper.

    Staying on carbimazole wasn't an option he gave me! I thought that staying on this long term wasn't an option. It amazes me that people are told such conflicting things, no wonder there is so much confusion!

    If I could safely stay on tablets I would but I think because of toxic multi nodular goitre they need to do something.

    Just not sure which option to choose.

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  • Posted

    You need to do your own research, the side effects of RAI can be terrible. As I said because of my genetic makeup surgery isn't an option and my consultant said RAI often fails in someone of my age. Also reasearching side effects of RAI don't bare thinking about. I'm sure there are people who it has worked perfectly for with a small amount of side effects but you must be prepared if you are not one of those. You can stay on carbimazole long term, obviously this mean NHS cost in treatment and medication as ull still need regular blood tests etc to make sure everything is stable, but you must control this, ie, always take medication, be prepared for it to be forever. If u have RAI or surgery ull have to take thyroxine for the rest of your life. I would say surgery is probably better bet than RAI as at least once it's done it's done, RAI may fail. After surgery you will be on thyroxine no longer carbimazole. I'm a single mum of 2 children, I made sure I knew everything so when I went to see consultant I could put things forward to him. You have to do what is right for you in the end, but make sure you know everything so there are no surprises. Best of luck.
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  • Posted

    I agree with everything Ladykinkavel said. Goiters can be caused by Hashimoto's disease, (which is another autoimmune disease like Graves), thyroid cancer, low iodine intake, and Graves. So the treatment depends on the cause. Most thyroid cancer is treated by surgery as well as RAI.

    The medical profession in North America is very RAI/surgery oriented, even when there is no indication to go this route, i.e. medication controls the disease. From the patients I hear who have had RAI, I never hear thear that they return to normal or baseline (before they were diagnosed with thyroid disease). Most all complain that the T4 replacement they take does not make them feel normal, they have problems with weight gain, tiredness and feeling cold.

    Holistic treatments such as Reiki, stress management techniques are always very healing and at least not harmful.

    What helped my Graves disease was the addition of acetyl-L-carnitine to my medication of Tapazole. It made the Tapazole do its job better. As well, I had to deal with the stressful situation that I believe triggered my Graves.

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  • Posted

    Interestingly I was told that a few years ago, doctors believed carbimazole was more dangerous than it actually is, hence the change in opinion on the long term use of the drug. I do however find it quite unbelievable about the level of conflicting information that is given out by various 'specialists'. No wonder we are confused when they obviously cannot agree amongst themselves! Personally I would try and get a second opinion before considering either RAI or a full thyroidectomy. There is no turning back once either have been undertaken and then you just swap one set if issues for another when you become hypo.

    I was interested in Ladykinkavel's comment on the immune system not destroying the Immune system. When I was diagnosed as being hyperthyroid I purchased a prepaid prescription card, but when I went to get my first set of meds, even the pharmacist questioned whether it was worth it, as she believed I would go hypo within a couple of months when I would be given thyroxine for free. So there is clearly a belief that this will happen although my doctor did confirm that it could actually take several years. So I am really confused now.

    I do really worry about RAI though. They say you must stay away from everyone for a couple of weeks. If it is so dangerous for others just coming into contact with us, what can it do to us who have actually consumed this radioactive pill? Sounds pretty scary to me.

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  • Posted

    I have not heard of anyone with hyperthyroidism who has not been treated with RAI or surgery going hypo, other than people who have both Graves disease and Hashimoto's. Hashimoto patients especially can go between hyper and hypo.

    I only hear of patients who are on high doses of medication having side effects from the meds. The addition of acetyl-L-carnitine will result in a person having to take lower doses of medication. Most doctors are not aware of this. Mine was shocked when he saw the results of the L-carnitine lowering the need for as high a dose of medication.

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  • Posted

    Screwball you've confused me now, in your first comment you said that you were told you own immune system would eventually kill your thyroid, so why hurry the process. This is wrong and I don't know why your specialist would of told u that. As if this were true why wouldn't we all just wait till it does it itself. That is why u have RAI, to kill your thyroid, bearing in mind this sometimes doesn't work. After u have RAI or surgery, you obviously will be left without a thyroid which is why u then take thyroxine. You will be on thyroxine for the rest of ur life which is why you would get it free. Usually your gp or specialist will control any thyroid problems with medication for 6months to a year. Most people return to normal and can come off medication and pituitary gland returns to normal. Obviously in my case and many others this didn't happen. As I was still unstable even on medication, and ending up in hospital after many 'thyroid storms' I was put under specialist care I go hospital every 2weeks. Last year I was told I wouldn't be cured and it was up to me which road I went down, he told me RAI wasn't an option. I told him surgery wasn't option for me, so that left me with being on carbimazole long term, but very carefully managed. At the moment my pituitary gland isn't functioning and I'm running slightly over active even on my meds, and has to keep increasing and decreasing. If it runs slightly over active for a few years u start having other organ problems. I decided to research diets, lifestyle and now prepare every meal me and family eat freshly no processes end foods etc, no tea, coffee. I exercise regularly even if it's a walk round park, and it had 'reiki' once a week at first and now once a month. I have been stable now and my symptoms controlled for at least 3 months which isn't a huge amount of time, but from having to go into hospital every other week being very I'll with symptoms it's a blessing. I'm not spiritual and was very wary when I first went, but in last month I have been able to decrease my carbimazole to 10mg one day, 5mg the next. And where I was having anxiety attacks and feeling down from emotional imbalance of illness I've been able to come off propranolol and citalopram and now tAke neither of them. And I put it all down to inner healing. You have to take control and not let illness control u. :-) I love reiki!
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  • Posted

    Ladykinkavel, congratulations on your success at taking control and enjoying increased benefits. I totally agree with what you said.

    Linda

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  • Posted

    Perhaps I have assumed, rightly or wrongly that once the thyroid is destroyed one way or another that you would be hypo if you did not take thyroxine which obviously you do need to take for the rest of your life. I don't know very much about that side of things but from what I have read here and the problems others seem to suffer getting their doses sorted out, it does not really appeal. It certainly sounds harder than anything I have experienced. Within a few days of taking carbimazole, apart from residual weakness, I felt really well in myself. Anything I have said is what my doctor told me so I am really confused now. I do realise that many people to go into remission and I did think it strange that my doc suggested I had RAI after only 2 blood tests when the 2nd test had me back in range. I really am doubting my doc's knowledge of the subject but why would the pharmacist say the same thing? She was at an independent chemists with no connection to my doctor's surgery. Can anyone tell me if they have stayed on carbimazole for several years and still stayed stable. I did find on 15mg of carb I did develop systems of hypothyroidism and reduced to 10mg and now I feel absolutely fine.
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  • Posted

    Sorry reply posted before I finished. I do exercise regularly by swimming, horse riding and walking and I also work full time. I have tried the acetyl l carotene but they gave me an upset stomach but I try and follow a reasonably healthy diet, ignoring the Xmas blow out. So I guess until something changes, I may as well say on the carbimazole.
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  • Posted

    I have been on Methimazole (Tapazole) which I assume is the same as carbimazole since 2007 and I have been fine on it, adjusting it up or down, mostly down since starting on it. The medical establishment seems to "follow the herd". What that means is if the profession says treat this with RAI, they will always lean towards that theory and will not listen to what patients tell them. If they did listen, they would hear that patients on T4 synthetic thyroid replacement do not feel normal and have several other complaints. I know this because I have worked for the medical profession for 40 years.

    Knowledgeable specialists (and there are not many of them who will go against mainstream medicine) know that to feel normal a combination of T3/T4 is better for patients who no longer have a thyroid. But it is better not to destroy your thyroid unless you have thyroid cancer, in which case that is the only choice for that condition.

    For other conditions, we have a choice. I have also learned since working for doctors to become an empowered patient and always do research on my conditions. It has paid off for me.and my health.

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  • Posted

    Thank you Linda. That is exactly how I feel. Surely it is better to retain your natural thyroid function, albeit a somewhat erratic one, than to rely on a replacement therapy that may or may not work. Yes, I think Methimazole is roughly the same as our carbimazole and I am more than happy to hear that you have been taking it more nearly 7 years and you are still well. Therefore going back to Nikki's first question, I think if she is well why change things.
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  • Posted

    Screwball you can continue to take your tablets most definitely is your stable. How long ago were u diagnosed. And after 2 blood tests I would definitely tell you to turn down RAI, after reading possible side effects I would only say it's last resort. I wouldn't trust a pharmacist when I was taking citalopram they told me to just stop taking it, and then I remembered something I'd read and goggled it, and it's not a drug you should just come off. As I'd said to NIkki, do what's right for you, you know how you feel, when my gp was saying I def can't reduce my propranolol and citalopram, and to them come off them gradually and be now 3months with nothing. Seeing their faces was priceless honestly. Lol. If you ever feel weak or tired go on you tube and do a guided meditation. Puts your body and mind in a good place :-) best of luck to you. I'm glad there is so many people to talk about it to. Sometimes you feel like your the only one x
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