Surgery vs radio iodine

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I’ve been told by my new consultant today that I need to make a decision about a permanent treatment for Graves’ disease. This is something that only occurs following pregnancy’s and I’m 3 years post my last daughters birth with almost normal thyroid results while on 5mg of carbimazole daily. I have no plans of any further children so presumed that all would return to normal and that would pretty much be the end of it, apparently not! I’m also a insulin dependent diabetic with children aged 11, 7 & 3. My consultant gave me zero information about the two options so I have done some research online but still don’t know which would be the best option. Obviously the radio iodine is a far less invasive procedure but I’m concerned about contact with my children afterwards, I’m the parent responsible for all school & nursery runs, after school clubs and swimming etc. If anyone can offer any advice I would be very grateful, thanks

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  • Posted

    Radioactive iodine can cause Graves eye disease.  Is it your wish to do one of these procedures?  For myself I absolutely did not want that.  I want to keep my own body parts.  I found for myself that taking supplements along with my low dose of Methimazole helped advance my recovery.  I am at the point now where I have cut my Methimazole to 2.5 mg 3 times a week and might even stop it.  My Endo has told me my antibodies are non-detectable now.  
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  • Posted

    Is your thyroid level (T4, T3, TSH) in the normal range now? How long have you been taking carbi now?  Why are you still taking med as your thyroid level normal now? Do you still have any symptoms now?  What are the reasons your doctor told you to take one of the two procedures? You need more information, especially the consequence of taking these operations to make the big decision of no operation or go for it (and which one).
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    • Posted

      My TSH & T4 are now within range but my T3 is still slightly off (not by much though). I have been on Carbimazole for approximately 2 1/2 years this time round but have previously been taking it on two other occasions for 18 months -2 years. She is a new consultant who has just started within our NHS trust and is of the opinion that I need a permanent ‘fix’ for my condition as it will continue to reoccurr if not, my previous consultant had talked about radio iodine but I had always said no due to having 2, now 3, children at home

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    • Posted

      I am not sure, but it looks like you have been on the path set by your endo that first treatment by anti-thyroid med is near the end (after 4 years) without success (in doctor's view). The next treatment (set by your doctor?) normally would come as either RAI or removal... However, there is another option for treating GD: naturopathy (conventional doctor and endo usually won't even talk about it). In my opinion, this is the best, most effective way of treating GD. You may want to consider researching it to see if it can meet/benefit your condition/situation.

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  • Posted

    Hi claire41670, during my last appointment I was also urged to consider surgery or radioactive iodine. However, I was given leaflets regarding both procedures as well as thyroid eye disease and hypothyroidism. I have taken a photo of the paragraphs called 'important points'. 

    The radiation used with RAI is just enough to damage about 20-30 grams of thyroid tissue and for that, the radioactive iodine has to concentrate in the thyroid. Most of the radioactive iodine is eliminated via the kidneys within the first few days. The minimise radiation exposure patients are asked to keep children, pets and pregnant women at arm's length during the first 2-3 weeks. 

    The main risk of surgery is damage to the vocal chords and damage to the parathyroid glands. You might want to research hyperparathyroidism as it can be a potential (hopefully transient) side effect. 

     

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    • Posted

      Hi, thanks for the info. I’m thinking that the iodine is surely the most sensible option but with a 3 year old I’m not sure it’s the most practical! I don’t really want to put myself through surgery if I don’t need to as very surgical procedure obviously carries risks. Have you made a decision regarding which choice you’re going to make?
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    • Posted

      Hi again, this is the second time that I became hyperthyroid. Both times I have responded rather well to treatment with anti-thyroid drugs in the sense that side effects were tolerable and my thyroid hormone levels could be controlled. For now, I will continue to take anti-thyroid drugs to see if I reach remission again.

      The other thing that keeps me from opting for radioactive iodine is the prospect of having to take thyroxine supplements for the rest of my life. Now at least I have the hope that I will be able to stop taking anti-thyroid drugs after some time. 

       

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