Remission?

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Has anyone in the group gone into remission and stayed that way? I'm deciding whether to have surgery (I can't have RAI as I have thyroid eye disease). I've had Graves disease flare up three times now. Each time seems to be worse and I had few symptoms when first diagnosed. If I go into remission again will I almost certainly get it again?

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  • Posted

    I was diagnosed in 2007, placed on 10 mg of Methmazole.  My FT3 and FT4 immediately normalized but my TSH would not rise for the first 2 years until I added supplements - L-Carnitine 3,000 mg, Vitamin D3 1,000 to 5,000 IU per day, Magnesium 200 mg daily, along with anti-inflammatories Omega 3 and curcumin.  I am currently on 2.5 mg of Methimazole and if I have to take it the rest of my life, that is fine with me.  However, my antibodies have normalized and my doc has given me a choice to stop it.  I see some people stop it when they are euthyroid but their antibodies have not normalized and this is sure to have a rebound of their disease    I would prefer my treatment plan any day to losing my thyroid and replacing hormone with Synthroid.  Nothing is as good as your own hormones.
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    • Posted

      I take all those supplements and more besides for other auto immune issues. Of course you are right that your own hormones are best but I've already had bits of me removed as they weren't working properly and leaving them in would create more problems. If I knew it would be as simple as taking a low dose of carbimazole for the rest of my life I'd be quite happy to do so. However it seems that if I get an infection or a lot of stress, and who can avoid that in their lives, it comes back with a vengeance. It's taking months to get back to feeling ok against time it happens. I think I'm going to see this flare out, as I respond well to medication, and if it comes back for a fourth time I'm fixing it for good. I know numerous people on thyroxine who are just fine. We only get to hear about the problematic cases on Patient UK. I'm sure most people would feel as I do if they'd had it happen to them.
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    • Posted

      Hi Sue,

      I too have graves and ive been taking the supplements recommended by Linda (Im feeling good these days), plus im on 15mg carbimazole daily. Ive recently came across a very interesting article. Apparently Graves is linked to Leaky Gut. I kept on googling and the more i read about Leaky Gut the more all made sense. Im going to a naturopath today and will raise this with him. Leaky Gut causes Auto Immune problems and Graves, Its very common and treatable.

      Hope this helps a bit. Jody

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    • Posted

      Yes I have heard a lot about leaky gut causing autoimmune problems.  Because of this, I asked my doctor to check me for an H.pylori infection.  His office called today and said he wants to see me tomorrow.  I don't think he would do that if it is just negative.  Apparently 50 to 75 percent of the world population has an H.pylori infection. 
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      Oh wow Linda. Yes, the doctor would only want to see you if something came up in the test. That is amazing how ive come across this and learning now about you just before going to see the naturopath.

      Ive been taking cold Probotic for the last week after reading it helps to restore the lining of the gut.

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    • Posted

      Probiotics are good but they don't get rid of an infection if you have one.  You need to be on two antibiotics and an acid reducer.   The lady who lives in the apartment upstairs from me hates doctors and only takes naturopathic treatments unless she is in incredible pain as she was last year when they found out she had colon cancer.  She refused traditional cancer treatment.  She also had H.pylori and took a naturopathic cure but did not check if it had gone away.  I fear it might have had something to do with her cancer.  It has metasticized now.
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    • Posted

      All will be fine. Stay positive.

      I will let you know my results from naturopath.

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    • Posted

      That's interesting. I gave up gluten about six weeks ago. I've been feeling less tired and the 'bad' days lessened. I've also got sjogrens and lupus. My symptoms have improved, especially dry mouth. I understand wheat is one of the main things that cause leaky gut.
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  • Posted

    Do you get your antibodies checked before you stop your meds?
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    • Posted

      No Linda I didn't even know about antibodies then. Things are very different here in the UK. I was told I was eurthyroid and had my blood checked 6 months later. I was stable so discharged with a 'there's a 40% chance of it coming back' warning. I was ok for two whole years, got sepsis and it came back only much worse.
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