Radioiodine treatment - Real life view wanted!

I was 23 and had no side effects on a high I131 dosage to entirely eliminate the malfunctioning gland!

Hi clarks15

I have not been to well I have been feeling very sick but not been sick seen my gp and gave me some med for my sickness but all in all I have had no more side effected I think you will be fine on your ridi do wish you well keep me posted all the very best to you

BoPeep

I'm sorry to hear you have been Sick i hope your immune system picks up soon hun

I will keep you posted for sure thank you

Hi Clarks 30

Thank you for your massage I am seeing a dr about my eyes because of graves they have fetched my appointment a month early so I go on Tuesday I hope they don't fined any thing let you no how I get on hope you are ok and to ill with the thyroid you will pleased to get your appointment on the 14april I wish you well bopeep

Well Rachel, I started off being hyperthyroid, and was given anti thyroid meds

such as beta blockers and methomize, (I probably spelled it wrong), because of my rapid heartbeat and i lost a lot of wgt. well those drugs helped me, it stabled my conditions, at least i thought and i started gaining my wgt back and i felt great, in fact, i wanted to stay on the meds, but those meds damages the liver so you can't stay on them for a very long time, plus i was still quite hyper according to my blood tests....ok that's when my doctor decided to give me RAI

I had read about RAI, but did'nt quite understood what purpose it served untill after i took it...well RAI kills the thyroid! So once it is dead, it don't produce the right amount of hormone your body needs to make your thyroid function right..for me when i took it, it doesn't hurt, you fon't feel nothing, i did not have any side effects or nothing. Only thing is that i had to stay away from my family for like 3 or 4 days so they won't be exposed to the radiation. i was only given a very small dose, and now i am on Snythroid. My body is responding great to process of treatment so far....knock on wood, to answer your question, I would just maybe get a second opinion before i do RAI, Rai would be my last resort

only because I often wonder that by taking RAI, would that increase my chances for getting some form of cancer or Lekemia or other organs getting damaged down the line, that's just me, started reading a lot, just do a little research, and decide for yourself, because this is my experience, it's scary trust me i know, i am scare myself, but i had a little talk with God and i asked him to walk with me, and I let him know I want to Live.....So Good Luck Rachel

Hello Rachel82,

I have Hyperthyroidism, Graves Disease, and was told my RAI was to be in 8 day's time, in other words I was being bulldozed into something I felt was not for me. After speaking with many people who have had RAI I decided it was not an option for myself to take, first off I was feeling bullied by endo's and lied to about the pro's and the con's with RAI treatment, 3 Endoctrine Doctors told me I would be Hypothyroid after taking RAI, also that I would be gaining alot of weight, when I questioned about depression etc, I was told this does happen to alot of people, I spoke with another Endoctrine Doctor and he said no you will not put on weight, and we can control the dosage. My last visit was with a professor of endoctrine he claimed the same thing no weight gain, that the RAI would just kill the bad part of the thyroid, when I asked can you write that this is correct and it will not affect any other organs in my body, as most people know that iodine can be traced in other organs, he said no I will not write that...That answered my questions for me, personally I would never agree to RAI ever as I have been lied to, bullied and every person I spoke with that had this procedure all regret it, they all have weight problems, depression, panic attacks, tired all the time, and some have developed chronic fatigue. I would investigate it alot further, and not just believe the first doctor you speak with, it will not solve your thyroid problems it will just remove the hyper and turn it into hypo, then you will be on medication for the rest of your life. Also you will have no way of losing weight once you start gaining, you will be tired alot, and if your lucky you will not develop the depression and panic attacks.. I have spoken with 12 people face to face meetings that had this treatment and all of them were so unhappy they wished they could turn the clock back and reverse the RAI, I looked at before and after pictures and could not believe the changes in these ladies, so much weight gain, diets, exercise, nothing worked, well I guess it would not work when the metabilism is no longer there to burn the fat.

I wish you the best of luck in what ever you decided to do, sorry if my reply is long winded, but I feel that RAI radio active waste to be correct, is a scary thing with to many risks.

Kind Regards,

Gwendalyn

Hi Rachel82. how did you get on. I'm curious because i am in the same position. i was diagnosed 2 years ago with Graves Disease, was on carbimazole and thyroxine for over a year, have now been off all medication for 6 months but my last blood test5 was showing overactivity. i have been advised to have radio active iodine treatment to. what did you do?

Have you been to see a Naturopathic Doctor, RAI will not fix your thyroid problems, it will remove the hyperthyroidism, but it will replace it with hypothyroidism and you will be on medication for the rest of your life,,

Hypothyroidism is not a better option as the Doctors will try and use that as there sales pitch, it is easier to treat Hypothyroidism than Hyperthyroidism,( Rubbish), that's what l say.. Ask a person who is now hypothyroid after taking RAI, ask the people that have not been able to work as they are so tired all the time, Depression and Anxiety, weight gain out of control, thyroid eye disease, hair loss, dizziness, migrains, mood swings, feeling cold.

One of my closest friends had RAI, it is his biggest regret, from a healthy happy hard working man, he is now a depressed ball of anxiety all the time, he is tired all the time sleeping 18 hours a day. 

This is heart breaking for his family and people who know him and knew him before taking RAI, he was a fit healthy person, he ate all the healthy foods, exercised everyday, and now he is cranky, tired, depressed with big anxiety attacks, his marriage ended because his mood swings were so bad. This person  is one of many who regret ever taking RAI, he would not take it if he knew what his life would turn out to be like now.

He has just had skin grafts done on his chest because it started itching all the time, he had surgery the next day to remove cancer.

Female friends are all over weight, one is wearing a wig due to her hair loss, depression anxiety, tired all the time, mood swings are really noticable... Answer would they reverse this if they could go back in time yes, they all regret having RAI, and are still having medication dosage problems.

And have not returned to work. 

I will not ever swollow a radio active waste tablet ever, NO, My advise to any person thinking of taking RAI go see a Naturopathic Doctor first.

Kind Regards,

Gwendalyn

  

 

Hello Rachel82,  I've had Graves disease twice and was 'lucky' in that the block and replace treatment with carbimazole worked well with me.  The second time Graves returned I'm quite sure it was thanks to the aspartame contained in another medication that I's started shortly before Graves flared up.  I too was told to have RAI but I refused and told the Endo man that I'd rather have surgery (although that also has risks) than swallow something radioactive, which goes against all my instincts.  I do know someone who has had RAI and apparently she is doing fine, but there are many others who don't.  Here in Ireland they also just give a standard dose, which I think is wrong for starters. 

I guess it is really a personal choice and doing a lot of weighing up everything, reading as much as you can about it. 

Whatever you decide, I hope all will go well for you - and stay off anything containg aspartame!

All the best,  Stefania

Hi all, I was first diagnosed with hyperthyroid when was 15 years old. Was so hyperactive and I was having the symptoms of a toxic thyroid that they put me on very high dosis of carbimazole and removed part of my thyroid thinking whatever would be left would produce the normal amount of hormones. It happened that the small amount left always produced too much and I am on Carbimazole now for 25 year (dosis varying according to blood test results). I am really down for the last 2 years having all sort of issues from loosing weight like hell, being over-tired, constant infections, very low immune system, pains all over my body. Thyroid levels are normal with Carbimazole (never stopped for 25 years, stopping for a few weeks is enough to get hyper) and they are saying that my symptoms are not thyroid related. Been doing a lot of health checks and everything seems normal. The doctor told me that I can either stay on Carbimazole until I get some reaction or do RAI (which according to him is the best as its easier to treat under active than an over active thyroid). I am so confused that dont know what to do. Anyone has had Carbimazole for so long?