Radio active Iodine treatment

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Am reading some disturbing information regarding after treatment with radio active iodine.  Have any of you gone through this please?

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    I refused RAI or surgery to remove my thyroid because it is permanent and I didn't trust the doctors to adequately replace my thyroid hormones.  I have also heard disturbing information, but there have been those who are glad they did it.  Still, I stick by my decision as having been best for me.

    I was diagnosed with Graves' Disease in 2009 at age 60, actually having had a TSH test done the summer before that was near zero.  I was treated, possibly over-treated with Methimazole and after a year and a half, I rebelled and didn't take it for a summer.

    Then I went to another Endocrinologist and followed his recommendations for a while.  I had a lot of trouble with brain fog and I fell face down in the street a day or two before one of my appointments.  He saw my skinned up face and asked what had happened.  He took pity on me and lowered my dose.  The next lab results showed my TSH had risen from zero to within the normal range, so he lowered my dose again and the TSH rose again to just above the normal range.  He lowered my dose again but really didn't like doing it.  From there on out I lowered my own doses right after one blood test and kept it constant for at least 4 weeks before the next.  My TSH stayed within the normal range and each time I would have an appointment with the doctor I would let him know exactly how much Methimazole I had taken, and he approved it retroactively.  Since going off the drug in December 2012 I haven't had to take it again, and I believe that doing it the way I did was what helped me stay normal.

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    • Posted

      Thank you so much for the information. I am realising that this over active thyroid is a very complicated issue. So much to think about.
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  • Posted

    Yes, I have had RAI and regret the entire ordeal.   When I went through RAI, I swelled up like a chipmunk.    I have permanent dry mouth and blocked saliva glands, and have not been the same since.  My body literally felt like I was made of lead.  I dont care what anyone says.. radiation is poison and not only attacks thyroid cells,  It must travel through your body at some point to be flushed out.
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    • Posted

      Thank you Sue. All this is very worrying. I have to see the consultant next week and can't see what I can do about it. I shall ask her if I can stay on medication and hope she will agree. Mind you, I am not at all happy on the tablets. Have to give it all a good think before the appointment.
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  • Posted

    Hello Joan,

    I had thyroid surgery in 2009 and was treated kindly and professionally under the NHS.  I was a healthy, active person running a business who found a lump in her neck.  The initial advice was leave it and it it continues or enlarges back to my Consultant.  When the 1st surgery discoved I had thryroid cancer it was a real shock closely followed by the total removal of my thryroid gland.  The Radio active treatments went on until  Feb 2011 all the dark cells on the scan had gone.

    If you need to have your thyroid removed it is for the good of your health.  My tumor was 25mm (1'). Think of when you have a chop and you carefully remove the fat around it - however expert you are small bits of tissue can remain.  These need to be removed and they are targetted by swallowing radio active iodine capsule like a cod liver oil tablet after you have followed a low iodine diet to prepare your body. 

    I was treated in a specialist hospital room - lead lined. Being radio active is closely monitored by the nuclear staff and your task is to drink and pee and suck boiled sweets to get the saliva moving everthying through the body, showering and changing your clothes ( only take old stuff as it has to be boiled and left there.  You stay two or three nights listening to the tv or radio as you are radio active! You have a few restrictions about being next to others for too long when you intially leave hospital and carry a letter if you enter an airport and cause an alert incident.  You are called back to have a 45 minute scan around the neck and across the full body to see if the radio active iodine has lodged in any thyroid cells.  If they show up on the scan  6 months later you are back in doing it all again.  I went through the process 4 times and the diet 5 times until 2 years later I was in the clear. I now go every six months to hospital and have very thorough blood assays to check all is as it should be.

    I managed to continue to work all through my cancer treatment except when recovering from operations and tiredness from the low iodine diet (they want you weary and lethargic without thyroxine for about a month to get the best results)

    I found that the tiredness and memory problems were possibly not due to the radio active iodine treatment but having two lengthy operations within one month.  These have now gone and any slips I put down to hitting 60! I have a daily dose of 125mmg daily. I run my business, I have my family and they have me.

    Joan,if you have been diagnosed with cancer the surgeon operating on you must be skilled in this field. I also had great care  given to me by the Nuclear Medicine Team. If you have been offered the treatment you must discuss these idoubts with the professionals who have spent years on study and reseach.

    I wish you well as I have just found this site today and I hope my comment are useful. It is rare for them to loose a Cancer Thyroid patient but it does happen so speak to those who really can give you the answers.

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  • Posted

    Hi Joan, I had radioactive iodine treatment last year and I am sorry I did. Now in saying this I also wish to say everyone's experience is different. Around 7 months after having this treatment I started to feel very tired and really out of sorts, but my blood results said i was not underactive. When I was at last diagnosed underactive in March of this year I hoped that now I was taking the medication that my symptoms woul improve, but if I am honest I feel worse. The trouble I am having now is with the medication (levothyroxine) just is not working for me and the side effects are cancelling out any benefits.  I know I have to keep taking the medication, but how long I can take this not sleeping I have no idea and it is ruling and ruining my life. Please look into and all options before you make your final decision.
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    • Posted

      Mags, I hope you will talk to your doctor about this.  In some cases they will give Liothyronine to patients that have trouble converting the T4 to T3.
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  • Posted

    Hi Joan, I had this treatment some 18 months ago and I have not been well since having it done. To complicate matters I am not responding well to thyroxine and have just been advised to stop taking the medication all together. I go back to my doctor on Thursday so it will be interesting to see what he has to say. When I was advised to have this procedure done I was given the impression that it was a simple and easy solution to goitres I had and once I became underactive I would be given thyroxine and all would be well ! That just sounds like a fairy story to me now. Please think long and hard before agreeing to having this done and check out any alernatives too.
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  • Posted

    Everyone should think long and hard before going ahead with thyroidectomy and radiation iodine.   Doctors are now saying that thyroid nodules should not be labelled as cancer.   Doctors are recognizing that thyroid cancer is being overly diagnosed.   The thyroid gland is your thermostat and controls so much of your body.   Please everyone out,  there do your research.   I lost my thyroid and parathyroids.  My life has never been the same!  You are correct.  I was told this was a walk in the park and medication would replicate my actual thyroid...so far from the truth!  My life has been turned upside down.  I am no longer the same person I was prior to surgery.   Please Please look at alternatives!   
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  • Posted

    I had a multi-nodular goiter years ago. I felt a lump on my neck and ignored it. I was an avid weight-lifter and just did not wan to be bothered. I began having rapid heartbeat during exercise, my moods were all over the board, I was hot, then fold, had energy or no energy at all. I thought I was going crazy. When I was diagnosed I was so grateful there was a reason for my seemingly crazy list of symptoms that it never came to mind that I would refuse refuse radioactive iodine treatment. I could not imagine living my life with all the symptoms I was experiencing. My doctor explained that getting a balance of medication, synthroid, would take time. He was right. It was months before my thyroid hormone levels were stable and to this date in time I have adjustments to my medication once in a great while. I have no ill effects due to the course of treatment. I think Inwould have killed myself if there had not been a way to relief from the symptoms. I am grateful.
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  • Posted

    Hi Joan,

    Just curious what you ever ended up doing in regards to radio active iodine treatment? I am in a similiar position now...Would prefer to stay on medication- as long as its not harming my liver, and would like to have children in the next few years also. Lots of pros and cons.

     

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