Radioiodine any thoughts?

[Sal888]

I’m booked in for radioiodine in two days time, I’m really not sure I made the right choice. My endo basically said it was a must because it’s my 4th time of going into relapse with overactive thyroid, I’m really worried now I think it’s the anticipation more than anything and also some stories I’ve been reading about how people have really regretted it, if anyone has any advice I would be very grateful x

[pennyannie]

Hello Sal,

Well, if in doubt, don't.

Do further research, Professor Toft an eminent endocrinologist is now not suggesting either RAI or surgery to his Graves patients, irrespective of their age or number of recurrences of hyperthyroidism.

The full article is on here : Thyroid Hormone Replacement - A Counterblast to Guidelines. December 2017, Journal of the Royal College of Physicians of Edinburgh. It's 3 pages long and very interesting, third page, left hand side, third of the way down - you'll find his exact wording :

RAI is the very last option to be considered. Many people spend years on ATD, and if push comes to shove thyroid surgery is a better option, in that it is cleaner, precise and contained. RAI is toxic and is known to be absorbed by other glands and organs within the body.

Rai is the treatment of choice suggested by the hospital because it's the cheapest option for them, but it is not necessarily in your best interests.

If the leaflets are as they were in 2003/5 when I went through this treatment they need to be replaced, with the full information of RAI treatment.

Having just quickly looked at your previous posts, endocrinology should be treating you with anti thyroid medication for 18-24 months before suggesting something as final as RAI.

[Sal888 in reply to pennyannie]

Thank you for the advice pennyannie, I had a great endo and he retired and this new doctor is really pushing me to have it x

[pennyannie in reply to Sal888]

I know, it's very hard as the symptoms of this can make any decision difficult, even if the question is, " What's my name " ? You are not in a position of strength or wellness to make such an important decision that might be life changing.

Play for time, until you feel well enough informed and thinking clearly, for yourself.

Medics are paid to move patients through the system as quickly as possible. They are target driven to reduce out patient waiting times, and are not patient focused.

[Sal888 in reply to pennyannie]

I agree, not just thyroid but other issues as well are making it difficult too, I constantly ask my husband what I should do and he doesn’t have a clue about thyroid problems so he never actually says anything. Just a bit frustrated about it all and basically it was pushed on me and the endo couldn’t get me out of the office quick enough.

[pennyannie in reply to Sal888]

Have a look on the following website, if you haven't already.

Elaine Moore was diagnosed with Graves Disease and went through RAI treatment in the late 1990's. She found no help with her problems so wrote a book to help other confused Graves disease patients. She now runs a well respected, well researched website in the States, open all Graves people for all Graves questions and answers. There are open forums very much like this amazing site and certainly worth a dip in to, or more likely a permanent goto reference like this platform.

[Sal888 in reply to pennyannie]

Thank you for the advice I’m gonna have a look at the website

[ling]

With GAD, coming off carbimazole is not a good idea. Do you feel better when you are on the carbimazole?

[Sal888 in reply to ling]

Hi ling yes I do feel better on it, I’ve been on and of it for 10 years. Although this time it was a bit harder to control but now ft4 26.9 tsh 0.02 and I’ve been of carbimazole a week because I’ve been told I need to stop before radioiodine, it’s just nothing was explained to me I feel I’ve been thrown in the deep end with no choice. The endo keeps saying I will feel better GAD wise as well once I get it done but I don’t see how when it’s a completely separate condition

[ling in reply to Sal888]

Aside from the GAD, were there other Graves symptoms that were life threatening?

[Sal888 in reply to ling]

No nothing life threatening, they just said because I’ve had it for 10 years on and of that it’s time to get radioiodine

[ling in reply to Sal888]

Have you developed any other medical conditions in the 10 years?

[Sal888 in reply to ling]

No nothing at all only ever thyroid problems

[ling in reply to Sal888]

What were the thyroid symptoms?

Aside from the GAD, I saw in your earlier posts, weight loss, tremors, severe shakes, nausea and heart jumping out through your throat.

Any other symptoms?

Any heart issues? Racing heart beat? Irregular heart beats? Palpitations? Etc. Ever seen a cardiologist?

[ling in reply to Sal888]

Any blood pressure issues?

[Sal888 in reply to ling]

I’ve been to a cardio for anxiety thinking something was wrong but was told I was fine, I had palps with the overactive thyroid. No blood pressure problems

[ling in reply to Sal888]

Hi Sal, RAI tomorrow?

I hesitate to add anything further ...

[bantam12]

I had RAI after 30 years of having Graves which in the end was uncontrollable. RAI caused me no problems and I've been well on Levo since, wish I had done it earlier.

[MrsGraves]

I had RAI ten years ago for uncontrollable Graves. No problems, no regrets. I am well on Levothyroxine alone. I could not continue constantly juggling Carbimazole and feeling like death warmed up all the time. I’m back to feeling how I did before Graves struck. Most on here will advise not to do it - I just want to give an alternative view.

[dusty2]

Hi, I have had it with no problems. Having to take Levothyroxine everyday now does not bother me as I was feeling awful before RAI. I keep reading stories on here that once you have it you are just left to get on with it, for me that did not happen I had regular hospital appointments every four weeks then every 6 weeks. I still have blood tests at GPs every 3 to 4 months. Good luck.

[Greekchick]

Hello Sal,

I am 15 weeks post TT - Graves with toxic multinodular goiter - I was offered RAI 2 years ago and declined - I was well controlled on Tapazole for 2 years and then my goiter began to crush vocal cords, etc - so it was no longer an option. I didn’t want it for a variety of reasons - not the least of which I had a huge goiter and it would not have significantly reduced its size.

How old are you, if I may ask? And do you have a large goiter? The reason I want to know is that I am trying to figure out for myself if age as anything to do with the results one gets from RAI, good or bad. I also want to figure out if it is the length of time one is on anti thyroid therapy, the length of time one has the disease (Graves), or if it is other disease that one has that gives good or bad results with RAI. I have done some research on my own to try to figure this out,because I have read both sides to the RAI on this forum.

For me, RAI was not an option and my MD was willing to let me continue on Tapazole until it was no longer working or I had side effects. I believe with a large goiter, RAI is not a good idea because you leave tissue in your body that is subject to attack from the disease.

I personally believe surgery is cleaner and there is no thyroid left to worry about. Keep in mind that you may need more than one RAI treatment and that it can take from 6 months to 3 years to completely kill the thyroid function. Your meds will be up and down depending on how long this takes. That’s why I am asking about the size of the goiter if you have one - the larger it is, the longer it will take to die off.

Either way, you will need to balance the meds for some time - it’s such a rough decision and one only you can make. I agree with others here - you need to consider your personal situation and both sides - people have had good and bad experiences with both surgery and RAI. I had a successful surgery but drug adjustment is tough.

I wish you the very best of luck and either way, sending you positive thoughts for a good procedure. I know it’s not easy.

[Sal888 in reply to Greekchick]

Thank you greekchick, I’m 33 I’ve a small goitre and I’ve had thyroid problems on and of for 10 years, just not sure what way to go regarding radioiodine.

[Greekchick in reply to Sal888]

I started my thyroid issues at the age of 27 - pretty close to the same age as you are now. I was offered surgery 25 years ago after the birth of my son, but my goiter was small and I didn’t have terrible symptoms - and my bloodwork was always normal to borderline high . I elected to keep it because I felt that once you take it out, it’s just as tough as having it with other problems.

I wish I had better answers for you. I wish I still had a working or even partially working thyroid, but that was not in the cards for me. There’s no right answer - and it’s a very personal decision. Sending good thoughts your way as you think about this.

[Greekchick in reply to Sal888]

At minimum, I would ask your doctor why he recommends RAI and not surgery. That may give you some answers.

[Jacs]

My daughter had RAI almost 10 years ago and has regretted it ever since ... never been well and constantly fighting for treatment and meds

I’d recommend trying everything elsefirst including diet etc... you can’t go back once you’re thyroid had been destroyed

[Bettyheslop]

Hi Sal,

It's a big decision and you can only do what feels right for you.

I had RAI almost 10 years ago now and have never regretted it, it was the right decision for me.

I was on Carbimazole for almost 3 years, the endocrinologist was great but it was a real struggle to reduce my overactive symptoms and I was never able to come off Carbimazole. My life was horrible during this time, I was so unwell and struggled with every day living. My children were very young at the time and life was very hard.

I went for RAI and after everything settled down I was okay. Don't get me wrong it's not perfect being on levotyroxine and I do have times when I don't feel great but personally I found being overactive 20 times worse than being underactive, it was unbareable.

If I had the choice again I would do the same.

Whatever you decide to do I hope everything goes well for you.

[Sal888]

Just an update, I went to the hospital for RAI this morning and basically had loose bowels every few mins- I also fainted when I saw the box being wheeled in with the capsule I totally freaked. It was a lady that was dealing with it, she works in the radiation department and when she started talking about things like how radiation gets a bad rep and then told my husband to stay away from me for 2 weeks and there could be a small risk for cancer, and that I would have to be completely seperate from my kids for 3 weeks (I’ve 5) my kids finish school for summer so it would of been a very hard few weeks. I think my husband was more traumatised than me by this stage. I was never aware of anything like this and was never told by my endo! I feel so frustrated that I could of better prepeared myself for this, I was given a leaflet 5 mins before I was due to take the tablet that the nurse stated I should have received at my last appointment. Needless to say I didn’t get it done, I think my anxiety over took everything. I feel like a complete failure about this, home in my bed crying and feeling sorry for myself.

[bantam12 in reply to Sal888]

I carried on as usual after RAI apart from keeping an arms length from the children for a week, I still did the school runs and so on, sounds like the info you were given is a bit over the top !

[Sal888 in reply to bantam12]

I think it was way over the top, I do have anxiety so I tend to over think things, my husband is laid back and even he was very weary. It completely freaked me out.

[bantam12 in reply to Sal888]

What is freaking you out ? Everyone has different experiences but for me it was absolutely no big deal, drove to hospital, took the pill and drove home and apart from the minimal precautions life carried on as normal, I had no side effects other than tiredness when my thyroid gave up. If you aren't comfortable with it then maybe it's not for you.

[Sal888 in reply to bantam12]

Everything does scare me to do with medical things, it’s just part of my anxiety. I think they could of explained in more detail as I feel like I’ve been thrown in the deep end. It’s done now obviously I’ll need something done in the near future that’s a more permanent solution. Just feel like an idiot today for not doing it

[bantam12 in reply to Sal888]

The trouble is all the negative comments you read will be causing you anxiety and you go into it expecting the worst and failure. Only you can decide if its something you can do.

[Poppy2019]

I had radioiodine a four days ago and did the same as you, i freaked out when i saw the container it came in and was shocked at the weight of it. I did take it though, but i can empathise with you entirely for feeling how you did. A totally normal reaction to something all your natural instincts tell you not to take! For the record, i have kids too and i am missing the contact already but it is do able and i have lots of help. Everyone is different in how they cope with such options and decisions. Just get through it, however you can.x