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Graves back clinic pushing for rai or surgery any advice?

Posted , 5 users are following.

amanda78865
amanda78865

I was treated for graves with carbimazole for 18 months and discharged from clinic. All fine for 6 months but symptoms started again and my blood results show T4 18 and TSH 0.01. Clinic advised next step was rai or surgery not keen for either but looking for advice on both and any alternative treatment? Thanks

1 like, 7 replies

7 Replies

  • icecool
    icecool amanda78865

    Posted

    I amminterested in your posting because my tsh is 0.37, T4 15.1 TPOAS less than 33. Thyroglobulin 5. Low ferratin and iron. Have nodules but still untreated!
  • linda187
    linda187 amanda78865

    Posted

    Were your antibodies tested before you discontinued Carbimazole?  They should have been.  If you add supplements to your treatment, you will get better results.  I took Regular L-Carnitine 3,000 mg a day, vitamin D 1,000 IU per day, Magnesium 200 mg a day, curcumin and omega 3.
    • Sue1247
      Sue1247 linda187

      Posted

      Linda you've commented on my posts before. Much as I appreciate your concern I feel a lot of what you say is without foundation. It is not true that 75 % of people on thyroxine feel unwell. I know many people who feel fine whereas many don't on carbimazole. You've no idea about how I'm feeling or my medical history so please don't try to convince me it's not right option. I've had enough so I'll take my chances.. ev

    • amanda78865
      amanda78865 linda187

      Posted

      Yes I had them tested and everything was back to normal levels.
  • Sue1247
    Sue1247 amanda78865

    Posted

    The same thing happened to me.  I went into remission and then it started up again when I was going through a very stressful period.  That was March 2013 and now they are unable to stablise me.  When carbomazole is increased I go hypo and when reduced hyper again.  Three years is too long to have your life on hold so I'm going for a total thryoidectomy as RAI is unsuitable for me.  I suggest you see how you go with this flare and if it keeps coming back go for something permanent.  Thyroxine is used to treat hypo patients and is a MUCH safer option than carbimazole that has side effects.  I've tried vitamins and healthy eating and going gluten free but nothing works for some people.  I've also found that every time it returns it's even worse.  

    • linda187
      linda187 Sue1247

      Posted

      I have seen your pattern in patients who have Hashimoto's.  Do you have Hashimoto's or Graves and Hashimoto's?  If you do there are better options than the irreversible kill or destroy your thyroid.  At least 75 percent of people who do not have a thyroid and take levothyroxine don't feel good and levothyroxine is the drug of choice for physicians to prescribe.  People who keep their thyroid but go hypo don't seem to have the same problem with levo.

    • icecool
      icecool linda187

      Posted

      Hello Linda

      I would like to get rid of my thyroid and start living again.

      The signs and symptoms for me as well as others are devastating. No one should put up with this torture.

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