Anyone here had RAI done for Graves?: I was... - Thyroid UK

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Anyone here had RAI done for Graves?

I was diagnosed with Graves on july 2016 and took carbimazole for 3 months only. I was on remission after that until January this year. I dont have Goiter or eye probelms. Now I am hyper again and my specialist suggested RAI. Any ideas about RAI?

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I haven't had it but wouldn't recommend it. All I've ever seen afterwards is more difficulty. You went into remission a little too quickly, but in ways that's great. What's stopping you from doing carbimazole again? RAI is a permanent reaction to a temporary problem

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Hi marlow86 I've had RAI about eight yrs ago and I wouldn't recommend it, I was diagnosed with graves twenty yrs ago was on and off carbimizole for 12 yrs and was feeling pretty good most of the time then endo said as I kept relapsing I should have RAI treatment. The actual treatment doesn't hurt and is easy enough to have just take a tablet and have to keep away from people for a few days and children for a couple of weeks or so but you then go hypo and have to take thyroxine for the rest of your life and believe me in my experience doctors and endo's are not very good at making sure you get the right amount of medication or the right sort. It has taken me all this time to get t3 prescribed for me as I've not done well on levo thyroxine which is all they will normally give you especially now the price of t3 is so high. I would advise you to do alot of research before you decide as once you've had RAI there's no going back, I'm sure there are people on here who have been fine after RAI but I can only tell you what my experience has been like. One thought they normally keep you on carbimizole for much longer than you were on it, my endo's always wanted me stable for six months then would gradually decrease dose so I would be on carbimizole for up to 18 months at a time. I just feel RAI is the easy option for the endo cause once you had it and your on levo thyroxine they hand back to your GP and that's one more patient off their list. If you were alright on carbimizole then why not give it another go?

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Couldn’t agree more Raventhorpe. At my first endo visit the guy I saw outlined all forms of treatment for Graves then said we use the fast way - block and replace. He then went on to say my treatment would take a year. So if you weren’t treated with the ‘fast way’ then it sounds to me that your treatment wasn’t very long.

I was offered the RAI option should I relapse and there is no way I want it. I became hyper before I started the replace part of my block and replace and while it was different to being hyper, it wasn’t how I would like to end up. I have always felt it is just a quick way of consultants washing their hands of you and getting you off their list and back to your GP who may or may not give you enough thyroxine to keep you well.

When I was discharged I thought a lot about RAI and after a couple of weeks I went to see my GP to find out if I had to have RAI - No and if the hospital could refuse to treat me if I refused RAI and again the answer was no. If you look around you will see there are many patients taking carbimazole or block and replace long term so I would do a lot of research before you decide to have RAI.

Saying that there are probably a lot of people out there who have had it and are happy with their decision. I’m just not confident I would be able to get whatever medicines I needed to keep me feeling really well - rather than keep me ‘within the range’ which is what most consultants aim for and which is not necessarily the same. RAI is the quick and easy way out for your consultant but possibly not for you.

Could you be referred to a consultant who treats by block and replace and go at it more slowly?

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Block and replace isn't a perfect solution and doesn't always work, i tried it and because it wasn't working I asked for RAI. After 30 years of Graves with many relapses enough was enough, job done and well on Levo, wish I had done it sooner.

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So the “slow way” would have been titration, which typically takes up to 18 months.

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That’s exactly what the man said - I was just stunned that the ‘fast method’ took a year, a whole year! There was I dying on my feet a year didn’t feel very fast to me. I felt so ill back then I didn’t think I could last a year. And here I am still plodding along, just goes to show - not sure what though 😉

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Yes I had it 15 or so years ago, didn't have any side effects and not had any problems since.

Please make your own decision and don't be swayed by replies on here, some negative ones will be from people who have neither experienced Graves or RAI.

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Like I said above there are lots of people out there who have had RAI and are happy and well afterwards, on this website you tend to hear either from people who are new to thyroid issues and want more information or from people who are having problems and one of the main problems appears to be people who are hypo (and not always as a result of RAI) and who are not receiving adequate medication especially now that T3 is so expensive.

One trainee endo I saw towards the end of my treatment mentioned RAI - considering I hadn’t ever had my T3 checked I wasn’t keen on RAI - (the various consultant’s assistants I saw throughout my treatment kept saying ‘and your eyes are fine’. They didn’t actually ask how my eyes were or they would have found out that although they weren’t bulging my eyes are about as dry as you can get and I was having both blurred and double vision.)

Anyway this particular girl held her fingers up holding an imaginary pill and said ‘It’s only a little pill’, well I’m sure it is, the size of pill wasn’t bothering me, I said that I wasnt keen on RAI as I was worried that I might end up hypo and find it difficult to get adequate medication - her answer. ‘Oh, you won’t become hypo! ‘ Surely with no working thyroid most people will become hypo at some point?

Anyway, bottom line is that some people do very well after their RAI and others don’t. It’s not possible to tell in advance who will do well and who won't and the only person who can make the decision is the patient themselves who will hopefully have given the matter a lot of thought and maybe even researched to see if a total thyroidectomy would be a better option for them.

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Hi there - I was diagnosed with Graves in May 2015. Initially on carbimozole and propranolol. I was originally offered RAI and after research I declined. Research showed that some are fine afterward but some not and those who are not are on meds to for the rest of their life’s. It was a lottery I was not willing to get involved with. If I had been one of the unlucky ones I would now probably been fighting with my GP over T3 and my prescription. It has to be your choice but I would say a) it’s permanent and b) don’t do anything until you have researched it thoroughly. I am now on carbimozole only and have been on it constantly since 2015.

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I had Graves Disease and after block and replace they gave me RAI. 15 months later I was in a wheelchair. I can't convert T4 to T3, they don't tell you about that. I would get the private test done to see if you have that before you go ahead. Now they've stopped my T3 and I'm fighting to get it back. Get your Vit D done too as I can't absorb that. Some do do well but RAI doesn't always kill off your thyroid completely. It did mine. A lot of people do well on T4 alone but I didn't. I suspect they had some thyroid tissue left working. Only you can make the decision but I wish I hadn't had it done.

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I’m really sorry to hear about your predicament Summer64. It’s very sad that this has happened to you. Hopefully over time people who need T3 will eventually be able to have it again but in the meantime it doesn’t help you.

You’re right about vitamin D and people should have the B12, ferritin and folates tested too and make sure they are near the top of their ranges.

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Marlowe86, this is a very difficult advice to give because we are all very different people and one answer won't fit all...

I had Graves in 2008 (I was 45 years old) and took RAI after serious complications with Carbi (after 9 weeks of treatment).

The only reason I took RAI was this severe allergic reaction to Carbi which took me to the ER and days in the hospital, my body covered in urticaria, paralyzed legs and arms and nearly got the best of me. This allergy stopped me from trying Prop because the doctors believed there was a good chance I would be allergic to Prop too.

I got very upset and it took me some months to recover from the entire Carbi Drama and to accept that I had to take RAI. Those were the worst months of my life. I had full Graves riding me and all I had was Cortison... Couldn't walk, forbidden to do anything, even take the stairs in my own home or even move abruptly otherwise my heart would explode. At the time it felt like carrying a time bomb in my chest while a watermelon was growing like mad in my neck. I had other Graves' symptoms too, but the heart was the key problem.

Eight months after my Graves diagnosis I took RAI. After that my body changed completely and affected my life significantly (both positively and negatively). Some years later I would notice that RAI affected me more than I wished. That a life long of hyperthyroidism was not as easy as the doctors predicted. There are huge downsides in living with hypothyroidism but I was free from Graves and free from the craziness of hyperthyroidism.

I think it all seemed harder because I had a life long of hyperthyroid. I always had palpitations and tachycardia, since I was a teenager. I was very athletic, very thin, had the explosion and the muscles but lacked the cardio resistance because I had the worst heart palpitations to scare me all the time. I was a competitive swimmer but secretly had a electrocardiogram (at the age of 19) and hid it from my trainer. I dropped competition and started swimming for fun only and the heart palpitations only got worse...

The years after university, when I was not exercising, but working like mad, sedentary work, were the best time of my life. I was always energetic, super thin, eating like crazy and always thin, great digestion, great intestines and I didn't have to deal with a heart because only exercise exposed my heart "problem". I felt it all when I would run for the bus or take the stairs... didn't take much to wake up my exhausted heart..

The good news were, after RAI my heart went normal from one minute to the other. I got strong and more resistant. I am not as thin as I wish. I am over 50 now anyway. But if I couldn't walk or do any effort before, now my heart beats are that of a teenager again. I became a Master competitive swimmer and I can force myself as much as I want and my heart doesn't hurt or feel like it is going to explode and kill me. Now I have the energy and I can use it. All the symptoms of Graves disappeared (and I had them all, except for the eye). The shrinking of the goiter was very painful actually... even my doctor couldn't believe the pain I went through.

Yes, now I only take T4. Yes, my metabolism as hypo sucks. But slowly I found a way to adapt to life on Levo (T4) and this is all I take. A smart diet helps. I eat gluten and dairy but cut sugar. Maybe my conversion could be better. Maybe I should try T3 or NDT but I am quite lazy to try new things. I have learned how to make my body work for me and even if it is not always perfect, it is much better than life with Graves. In addition, my digestion is great (again) and my intestines work nearly as good as before, so I am content.

Graves is a serious life long condition and its effects can be nasty. I wish I had a healthy thyroid. But the truth is, I never had. We have Graves in the family. Grandmother had, my cousin had and I had. Now at least I can try to help my thyroid without the despair of having a heart attack at every corner.

You have analyze your life, your family history, consider your age, all your experiences with your body. Exercising, not exercising, eating (digestion), heart burns, sleep well, insomnia, heart problems, levels of stress etc... You have to be the master on your body and then you make a decision.

About Carbi

I was told I was going to have to take Carbi for a minimum of 4 years. I got prescriptions for two years of Carbi and prescribed a strict routine of weekly blood tests in the first months and then monthly.

Treatment with Carbi is a life long thing if you have Graves. Since Graves is autoimmune it is very difficult to revert. Unless you just had some momentum of hyperthyroidism. Usually not. Are you really sure you have Graves? No eye problem, no heart problem, no goiter?

I had a quite large goiter. It kept growing. Before RAI my goiter was quite big, pretty visible and anyone could see it.

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Thanks for posting this Claudia_Leonor. It’s a good reminder that while it’s unlikely anyone would opt for RAI as a first option, some have little choice - either because they can’t take antithyroids, or can’t achieve a sensible level of stability.

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It is not always that I have the time and will to write so much but when I do I usually feel happy about it.

I must stress that my results were fantastic with Carbi, hormones were near normal in a month and I felt good for the initial 9 weeks but after that the allergic reaction exploded and I had to stop... I am grateful for RAI because I would have hated to undergo surgery...

I am in Norway and here the prescribed minimum of Carbi is 2 years.

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That’s interesting. Is that for block and replace as well as titration ?

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In my case it was all for block and then replace... that's is all the doctor ever mentioned to me. I am not sure what titration means...

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Titration is where they start you off on a high dose of Carbimazole, and then reduce it gradually. Because the dose is reduced, it can take longer to achieve stability, so treatment tends to be at the longer end of 12-18 months . The advantages are that you only take one drug (so no levo), and over the period, the dose of Carbimazole is much less. Successful outcomes appear to be much the same. The downsides are that treatment can take longer, and more frequent testing may be required. Both are widely used in the U.K., but we don’t usually get a choice -each clinic has its own preference.

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Looks like my doctor did that titration with me then because the dose of Carbi I was prescribed was quite high and he mentioned that it would be reduced in the future when hormones were lower and that I would eventually need Levo...

I was never 100% into the info he gave me... I was very distracted back then.

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I think that’s the case with most of us ! When we’ve got a raging thyroid, we don’t have the patience or energy to listen to everything we’re being told, and in any case, our memory is typically so bad we soon forget it anyway !

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Oh Claudia_Leonor you have had such an awful time too. I did say to my GP that if I was ever not able to take carbimazole or PTU then I would obviously have to consider my next move so I can see exactly why you had it. The ‘craziness of hyperthyroidism’ I remember that well. My heart used to feel like it was about to jump out of my chest - you could take my pulse just by resting your hand on my stomach, it was horrible, I couldn’t sleep for my pound8ng heart. I was seriously crazy back then.

You’re right about sugar. I went GF and low carb high fat. (For another reason) but I think sugar is really bad for you, I feel much healthier without it.

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The pounding heart while in rest was some of the worst , I couldn't sleep like that either...

You know, Levo gives me palpitations and they were more unbearable when I take it at night. I tried taking Levo first thing in the morning (it gives me palpitations in the morning too) but it makes me really hungry and now I take levo in the middle of the day, hours after I've eaten breakfast... that's when I don't really feel the palpitations.

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That’s good. I tried my levo at night but it didn’t suit me - can’t remember why though. I found every time I needed an increase in my levo when I was taking it,my palpitations came back again. To begin with I thought I was going hyper again but someone on here said I was probably needing an increase and that was correct.

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Thank you so much for sharing. I was diagnosed on 2016 when all my symptoms was at its worst. I dont have visible goiter (neck is fine) or eye problems. My thyroid scan result was grave disease. But growing up (since highschool- I am now 32) I can remember that I was very emotional, irritable, a bit tachycardic (with palpitations), always anxious, had a hard time sleeping, and weight always fluctuating. I have tried everything ( gluten free diet, l carnitine, bugleweed, flaxseed oil) and I am not sure if it really works for me. I feel bad for people living with me because my mood is crazy up and down. I can not exercise because I am tachycardic. I have not exerienced sleeping more than 5 to 6 hours. I am just so tired and am now thinking of RAI

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So sorry Marlowe86,

You sound just like me. I felt really sorry for my work colleagues, my friends, my family but mostly my husband and kids back in 2008, when my Graves crisis started because irritation was my middle name.

I was forced into RAI and the only alternative to RAI was surgery and rather take radiation than have a surgery. Even if it gave me Hypothyroidism I don't regret RAI for a minute. Hypo is nothing compared to the craziness of Graves.

But you have to make the decision according to your own life style and plans. I was 45 when I took RAI but you are young. Do you have kids or plan to have them? Thyroid issues and medication can be a down side during pregnancy and even conception. It also affects libido and energy levels. Take it all in consideration.

Claudia

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I have a 9 month old baby. I am still planning to another baby in the future but it is really hard with Graves disease. :(

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But you know it all can end with RAI, right?

All Graves craziness disappear once you've taken RAI. So, use the idea and the possibility of taking RAI as a thought to lighten and inspire your days... just keep in mind that whenever you get tired of it all you can take the radiated iodine pill and let your life start again (as hypo). You will have to be keep away from children for 15 days though... can't even share the same bathroom...

Hypo is not bad, it is pretty unfair to say otherwise. I live a great life on 100mg of Levo only... I eat whatever I want and have managed to adjust my hypo body to my favorite life style and have fun. Yes, I am slightly overweight (my husband says otherwise) but I was extremely thin, sometimes I look at my pre-2008 pics and I looked like I was anorexic.

We are living longer lives now, humans never lived that long and there are so many new health problems to deal with and hypo is not the difficult one. It is not taken seriously by many doctors but mostly because It can be pretty easy to deal for most people. So, in case you decide to take RAI or surgery it will all be good and we are all here for you...

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Thank you Claudia. Im now scheduled for RAI on June. It has been a rough life for me because of Graves.

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Are you in the U.K. Marlowe ? Received wisdom is that those of us with Graves’ need to remain on antithyroids for 12-18 months (typically 6 months after thyroid levels have stabilised within range) in order to have the best chance of achieving remission, so coming off after three months seems a very short period. This did happen to someone I know, because she was allergic to the medications (and it did work out for her), but it wasn’t the original plan, and it isn’t the norm in the U.K.

As it appeared to work well for you before, (and assuming there was no medical reason for stopping the treatment early) I would ask for another cycle of antithyroids before considering the RAI route.

I would also ask what the treatment plan is, and if they plan to take you off the minute your thyroid levels are within range, I would query this. btf-thyroid.org/information...

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Hi Valaria

I am currently in New Zealand. I came off carb because I got pregnant (Nov 2016). GP suggested that I take ptu but unfortunately I can not tolerate it so I did not take any medication when I was pregnant. (Gave birth without complications Aug 2017) 4 months post partum my thyroid is hyperactive again. Now my specialist suggested RAI

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Hi there, Marlowe.

So glad you are in the right place. The following is an article written by a person who has been a Nuclear Medicine Technologist for ten years:

"TEN THINGS TO CONSIDER BEFORE HAVING RADIOACTIVE IODINE TREATMENT" tpauk.com/main/article/ten-...

It's hard for someone to treat Graves' any other way when they have no idea how autoimmune disease manifests. RAI rarely works except to render you still having Graves (the antibodies are always there) and most times, hypothyroidism too. You just traded one autoimmune disease for two.

There are people who have corrected Graves' through natural methods. Diet, nutrient supplementation, clearing the body of toxins that contribute to its dysfunction, and steering clear of the things that exacerbate dysfunction and bring about autoimmune symptoms. Our world is full of toxins and the thyroid is not immune to them. Nor is the rest of the body.

I had RAI ten years ago, RAI because I was deemed too sick for surgery. I didn't know anything about Graves' or autoimmune hyperthyroidism at the time and was foolish to trust that conventional medicine had a clue about any other possible alternative. In fact, I had no idea that my other ailments were all of autoimmune origin. It just shows how they are related. RAI did much damage to my salivary glands. It's not unusual, though they say it's rare. If I were them, I'd say that too... but I know better. Not to scare you, but you should be scared because this is a huge health decision. You need to gain an understanding of just how you got to where you are. When something makes sense to you, it's probably the truth. Then you'll act on what your educated mind feels is the truth.

If one autoimmune disease can be cured with adequate nutrition and detoxification, there's more than a good chance of doing the same with them all. After ten years of full-blown Graves' (I mistook it for the world's worst case of menopause), I found myself scared still by those who were saying it could kill me. What would most people say to that other than "Where do we get this done?"

Besides, I was in the throes of a very toxic condition... I didn't give it any thought at all, now that I look back on it.

Little did I know there were real choices. My other autoimmune diseases were piling up. As they did, so did the plethora of medicines to alleviate symptoms. I had absolutely zero stomach acid and therefore was in a terrible state of malnutrition. I had no idea. I just thought all these symptoms were solely related to the many autoimmune diseases I had. (Mind you, I didn't know they were AI diseases as I'd had them for thirty years). I had no clue they were all related. The combination of toxins and malnutrition eventually brings on some or another type of autoimmune disease.

"All autoimmune diseases are the result of Toxicity and Deficiency. If you’re suffering from an autoimmune disease then your body may have been exposed to toxins in the environment or food or perhaps toxic chemicals such as vaccines or medications. If you’re also deficient in nutrients such as vitamins, minerals, healthy fats, and healthy proteins then you’ll have the perfect recipe for autoimmune disease. So the key to preventing and reversing autoimmune disease is Purity and Sufficiency." I am living proof of the truth within those statements.

drjohnbergman.com/disease/a...

Please see the video on "Graves' and Hashimoto's" at the link above.

Changes in lifestyle by removing toxins and refraining from foods and habits that are detrimental to healthy thyroid function is more than just a possible solution. It has proven to work for those who are willing to give it a try. Please give your thyroid a chance to be saved if it can be. It's no fault of the thyroid, as it's what it is not getting that is at the root of the problem. You are no doubt nutrient deficient. It's basically a prerequisite for autoimmune disease. But conventional medicine rarely checks the nutrients as a line of first defense against autoimmune disease (dysfunction).

So I'm raising a glass (of purified water) to you finding truth and then using such truths to make the most important decision of your life. It's your health on the line here. Take your time and read everything you come across to the nth degree. There is much out there to help you.

There are some good tidbits shown here as well, with a free Google Books look into "Living Well with Graves' Disease and Hyperthyroidism, What Your Doctor Doesn't Tell You...That You Need to Know" – by the thyroid activist Mary J. Shomon

play.google.com/books/reade...

Hope this helps you to want to dig more. All the very best to you!

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